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Understanding Stress, Immunity, and Sleep Disturbances in Caregivers of Persons with Dementia

Permanent Link: http://ufdc.ufl.edu/UFE0021922/00001

Material Information

Title: Understanding Stress, Immunity, and Sleep Disturbances in Caregivers of Persons with Dementia
Physical Description: 1 online resource (195 p.)
Language: english
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: alzheimer, caregiver, dementia, psychoneuroimmunology, sleep, stress
Nursing -- Dissertations, Academic -- UF
Genre: Nursing Sciences thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Providing long-term care for a demented relative profoundly affects caregivers? lives. It puts the caregiver at risk for both mental and physical health problems. Caregiving of cognitively impaired individuals is a highly stressful activity associated with depression, impaired sleep, and immune and endocrine effects. The purpose of the proposed study was 1) to explore sleep patterns in high and low stressed caregivers of cognitively impaired community-dwelling individuals and 2) to explore the proposed link between stress of caregiving role and the physiologic/psychologic awakened changes that occur in caregivers with high and low levels of stress. A non-experimental prospective cross-sectional design was used to explore sleep patterns and the physiologic/psychologic changes that occur in caregivers. Thirty caregivers were recruited and a series of instruments was used to measure stress, depression, sleep disturbances and immune and endocrine function. Almost 40% of the caregivers showed signs of possible clinical depression. The caregivers tended to have high level of stress and perceived their health as good or fair. The caregivers also displayed high level of daytime sleepiness. There was no significant relationship between caregiving stress and sleep diary sleep efficiency (r = -.073, p= 354) and actigraphy sleep efficiency (r = -.127, p= .256). There was no significant relationship between caregiving stress and area under curve mean daytime salivary cortisol in respect to ground (r = -.094, p=.339) and mean total salivary IgA (r = .090, p=.328). There was no significant relationship between high stressed caregivers and sleep diary sleep efficiency (F=.171, p=.915) and actigraphy sleep efficiency (F=.598, p=.623). Secondary analyses were conducted using the sleep data on nights 2 and 3 and the cortisol and IgA data on days 3 and 4. On day 3 the caregivers had increased actigraphy total wake time and decreased actigraphy sleep efficiency (r = -.407, p=.014) and day 4 (r = -.407, p=.014). The caregivers also had increased actigraphy total wake time and decreased sleep diary sleep efficiency on day 3 (r = -.387, p=.021) and day 4 (r = -.360, p=.033). The caregivers also had increased cortisol after awakening and decreased actigraphy sleep efficiency (r = -.590, p=.002) on day 3.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Rowe, Meredeth A.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2010-05-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0021922:00001

Permanent Link: http://ufdc.ufl.edu/UFE0021922/00001

Material Information

Title: Understanding Stress, Immunity, and Sleep Disturbances in Caregivers of Persons with Dementia
Physical Description: 1 online resource (195 p.)
Language: english
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: alzheimer, caregiver, dementia, psychoneuroimmunology, sleep, stress
Nursing -- Dissertations, Academic -- UF
Genre: Nursing Sciences thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Providing long-term care for a demented relative profoundly affects caregivers? lives. It puts the caregiver at risk for both mental and physical health problems. Caregiving of cognitively impaired individuals is a highly stressful activity associated with depression, impaired sleep, and immune and endocrine effects. The purpose of the proposed study was 1) to explore sleep patterns in high and low stressed caregivers of cognitively impaired community-dwelling individuals and 2) to explore the proposed link between stress of caregiving role and the physiologic/psychologic awakened changes that occur in caregivers with high and low levels of stress. A non-experimental prospective cross-sectional design was used to explore sleep patterns and the physiologic/psychologic changes that occur in caregivers. Thirty caregivers were recruited and a series of instruments was used to measure stress, depression, sleep disturbances and immune and endocrine function. Almost 40% of the caregivers showed signs of possible clinical depression. The caregivers tended to have high level of stress and perceived their health as good or fair. The caregivers also displayed high level of daytime sleepiness. There was no significant relationship between caregiving stress and sleep diary sleep efficiency (r = -.073, p= 354) and actigraphy sleep efficiency (r = -.127, p= .256). There was no significant relationship between caregiving stress and area under curve mean daytime salivary cortisol in respect to ground (r = -.094, p=.339) and mean total salivary IgA (r = .090, p=.328). There was no significant relationship between high stressed caregivers and sleep diary sleep efficiency (F=.171, p=.915) and actigraphy sleep efficiency (F=.598, p=.623). Secondary analyses were conducted using the sleep data on nights 2 and 3 and the cortisol and IgA data on days 3 and 4. On day 3 the caregivers had increased actigraphy total wake time and decreased actigraphy sleep efficiency (r = -.407, p=.014) and day 4 (r = -.407, p=.014). The caregivers also had increased actigraphy total wake time and decreased sleep diary sleep efficiency on day 3 (r = -.387, p=.021) and day 4 (r = -.360, p=.033). The caregivers also had increased cortisol after awakening and decreased actigraphy sleep efficiency (r = -.590, p=.002) on day 3.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Rowe, Meredeth A.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2010-05-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0021922:00001


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UNDERSTANDING STRESS, IMMUNITY, AND SLEEP DISTURBANCES IN CAREGIVERS OF PERSONS WITH DEMENTIA By BRANDY L. LEHMAN A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2008 1

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2008 Brandy L. Lehman 2

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To my husband, who always provided support for my education with love, Brandy L. Lehman 3

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ACKNOWLEDGMENTS This endeavor represents th e climax of an impossible dream of one who has spent many years in academic pursuits. Many individuals have influenced my development along the way but are too numerous to be listed here The following warrant special recognition. Foremost among these individuals is my a dvisor and chairperson, Dr. Meredeth Rowe, RN, PhD. From the onset of my doctoral studies thr ough the completion of th is dissertation, she willingly shared her knowledge and experience. Her patience and understanding as well as her interest in my education and profe ssional growth are d eeply appreciated. Each member of my graduate committee has co ntributed to the development, refinement, and completion of this dissertation. Apprecia tion is expressed to the following committee members: Dr. Shawn Kneipp, RN, PhD; Dr. Deidre Pereira, PhD; and Dr. Susan McMillan, RN, PhD. My committee went well beyond their duty in helping me with this dissertation reading and copiously commenting on the numerous draf ts. They also provided encouragement and honest analysis of my work. Their collective insight greatly increased the quality of this dissertation. Special thanks go to Dr. Maureen Groer, RN, PhD for her assistance in data collection, use of the University of South Florida Biobehavioral Nursing Laboratory, and purchasing salivary cortis ol and IgA kits. Thanks are also due to Prima Hower, Faculty Support in the USF College of Nursing, for her professional, friendly, and efficient assist ance with many major and minor requests and enquiries. I would also like to thank her for assistance with editing and the many small but significant matters that impact on the quality of a product such as this. Special appreciation is extended to staff, social workers, and psychiatrists at the USF Memory Disorders Clinic for their assistance in securing subjects for th e pilot study. Without their assistance, this project would not have been completed. 4

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To my caregivers, I am especially appreciative. I thank them for sharing their thoughts with me. Due to their willingness to share ex periences, hopefully, nurses, other health care workers, and researchers can better understand life as a caregiver. My deepest appreciation is expressed to friends, family, and faculty members who contributed directly or indirec tly to my personal and professiona l growth. Special thanks go to my in-laws, my sister, and my cl assmates in the doctoral program, who were always there when I needed something during the program. An enormous thank you goes to my mother-i n-law, Gloria Lehman, for her unconditional love, enthusiastic support, unwavering encour agement, patience during times when I doubted myself and my abilities, and her steadfast faith in me. Special thanks are also extended to my best friends, Chris Garrison and Judy Campbell, for their friendship and support over the last 4 years. I am deeply grateful for their astonishing support, kindness, and generosity. I am eternally indebted to our friendship. I would also like to thank my loving husband, Lorne Lehman, and my four children for their constant and extraordinary support. They brought encouragement and joy to this process. I am particularly indebted to my husband, who has continually supported me during my nursing career. Words cannot express my love and appreciation for his love, support, and many sacrifices. My husbands enduring love makes me the most fortunate graduate student of all. It is obvious to me, as it should be to everyone, that I could not have done this without him. With all my love to my husband, I dedicate this dissertation. 5

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TABLE OF CONTENTS Page ACKNOWLEDGMENTS ............................................................................................................... 4LIST OF TABLES ...........................................................................................................................9LIST OF FIGURES .......................................................................................................................10LIST OF ABBREVIATIONS ........................................................................................................1 1ABSTRACT ...................................................................................................................... .............13 CHAPTER 1 INTRODUCTION .................................................................................................................. 15Alzheimers Caregivers ..........................................................................................................15 Caregiver Burden .............................................................................................................16Importance of Sleep .........................................................................................................18Sleep and Older Adult .....................................................................................................19Causes for Sleep Changes in Dementia Caregiver ..........................................................22Consequences of Fragmented Sleep ................................................................................23Stress Response ...............................................................................................................24Statement of the Problem ...................................................................................................... ..25Introduction to Stress, Coping, and Adaptation ......................................................................26Conceptual Framework ...................................................................................................26Stress, Coping, and Adaptation model ............................................................................28Stressor ...................................................................................................................... ......28Appraisal ..................................................................................................................... .....29Person and Environment Antecedents .............................................................................30Immediate and Long-Term Affects .................................................................................35Conclusion .................................................................................................................... ...362 THEORETICAL MODEL AND REVIEW OF LITERATURE............................................39Introduction .................................................................................................................. ...........39Stressors in Caregiving Situation ............................................................................................3 9Person Variables ..............................................................................................................39Environment Variables ....................................................................................................42Sleep and Nighttime Beha vioral Disturbances in the Care Recipient .............................47Perceived Stress in Caregiver ..........................................................................................48Primary Appraisal ............................................................................................................5 0Secondary Appraisal ........................................................................................................53Emotion-Focused Coping ................................................................................................55Problem-Focused Coping ................................................................................................62Effects of Sleep Changes on Physical Health ..................................................................66Caregivers Physiological Well-Being ............................................................................67 6

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Salivary Cortisol and Physiologic Changes ....................................................................69Salivary Cortisol and Older Adults .................................................................................73Salivary IgA and Physiologic Changes ...........................................................................753 MATERIALS AND METHODS ...........................................................................................78Design ........................................................................................................................ .............79Sample ........................................................................................................................ ............79Participant Character istics/Caregiver ..............................................................................80Exclusion criteria .............................................................................................................80Participant Characteristics/Care Recipient ......................................................................80Sample Size ............................................................................................................................81Subject Retention ............................................................................................................. .......82Measurements .................................................................................................................. .......82Caregiver Questionnaire Measures ..................................................................................82Caregiver Immune and Endocrine Measures ..................................................................93Care Recipient Questionnaire Measures .........................................................................95 Data Management ..........................................................................................................101Plan for Data Analysis ...................................................................................................102Procedures .................................................................................................................... .........108Recruitment ................................................................................................................... 108Data Collection ..............................................................................................................109Data Confidentiality and Integrity .................................................................................112Protection of Human Rights ..........................................................................................1124 RESULTS ....................................................................................................................... ......119Description of the Sample (Caregivers) ...............................................................................119Description of the Care Recipients .......................................................................................121Description of Study Variables .............................................................................................122Salivary Cortisol and IgA Calculation ..........................................................................123Salivary Cortisol and IgA ..............................................................................................124PSS and CES-D .............................................................................................................125Sleep Efficiency .............................................................................................................126Total Wake Time ...........................................................................................................126Caregiver Worry Scale ..................................................................................................127Results of Research Questions ..............................................................................................127Testing Assumptions for Multiple Regression .....................................................................128Independent Samples .....................................................................................................128Normal Distribution .......................................................................................................129Linearity ..................................................................................................................... ...129Residual Analysis for Assu mption of Regression .........................................................129Secondary Analysis .......................................................................................................132 7

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5 DISCUSSION AND FUTU RE RESEARCH .......................................................................142Discussion .................................................................................................................... .........142Implications for Future Research ..........................................................................................145 APPENDIX A APPRAISAL OF CAREGIVING SCALE ...........................................................................147B CENTER FOR EPIDEMIOLOGIC STUDIES DEPRESSION SCALE .............................149C EPWORTH SLEEP SCALE.................................................................................................150D MINI MENTAL STATUS EXAM .......................................................................................151E NEUROPSYCHIATRIC INVENTORY QUESTIONNAIRE .............................................153 F PITTSBURGH SLEEP QUALITY INDEX .........................................................................155 G SLEEP DIARY .....................................................................................................................157H CAREGIVER WORRY SCALE ..........................................................................................158I PERCEIVED STRESS SCALE ...........................................................................................159J DEMOGRAPHIC QUESTIONNAIRE ................................................................................161LIST OF REFERENCES .............................................................................................................163BIOGRAPHICAL SKETCH .......................................................................................................195 8

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LIST OF TABLES Table page 3-1 Measures .............................................................................................................................1173-2 Data analysis .......................................................................................................................1184-1 Description of the caregiver sample ...................................................................................1364-2 Description of care recipient ...............................................................................................1374-3 Descriptive statistics for major study variables ..................................................................1384-4 Correlation matrix of major study variables .......................................................................1394-5 Correlation matrix of secondary analysis Day 3 .................................................................139 4-6 Correlation matrix of secondary analysis Day 4 .................................................................1404-7 Study variables and missing data ........................................................................................ 141 9

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LIST OF FIGURES Figure page 1-1 Theoretical framework for caregivers ...................................................................................382-1 Theoretical framework for car egivers and ineffective sleep .................................................773-1 Mini Mitter ActiWatch-L ................................................................................................... .1143-2 Moderator model ........................................................................................................... ......1153-3 Mediator model ............................................................................................................ .......116 10

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LIST OF ABBREVIATIONS ACTH Adrenocorticotropin releasing hormone ACS Appraisal caregiving scale ADL Activities of daily living AD Alzheimers disease AUC Area under curve BMI Body mass index CBG Corticosteroid binding globulin CBI Caregiver burden inventory CES-D Center for epidemiologic depression scale CRF Corticotropin releasing factor CRH Corticotrophin releasing hormone DV Dependent variable EEG Electroencephalogram ESS Epworth sleep scale GAS General adaptation syndrome GR Glucocorticoid receptor HPA Hypothalmic pitu itary adrenal axis IADL Instrumental activities of daily living IgA Immunoglobulin A IV Independent variable MMSE Mini mental status exam NPI Neuropsychiatric inventory NPI-Q Neuropsychiatric inventory questionnaire 11

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PSQI Pittsburgh sleep quality index PSS Perceived stress scale PWD Person with dementia RCT Randomized control trials REM Rapid eye movement SD Standard deviation SDB Sleep disordered breathing SEo Actigraphy sleep efficiency SEs Sleep diary sleep efficiency SNS Sympathetic nervous system SOLo Actigraphy sleep onset latency SOLs Sleep diary sleep onset latency SRRS Social readjustment rating scale TSTo Actigraphy total sleep time TSTs Sleep diary total sleep time TWTo Actigraphy total wake time TWTs Sleep diary total wake time VIF Variance inflation factor WAIS Wechsler adult intelligence scale WASOo Actigraphy wake after sleep onset WASOs Sleep diary wake after sleep onset 12

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Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy UNDERSTANDING STRESS, IMMUNITY, AND SLEEP DISTURBANCES IN CAREGIVERS OF PERSONS WITH DEMENTIA By Brandy L. Lehman May 2008 Chair: Meredeth Rowe Major: Nursing Sciences Providing long-term care for a demented relative profoundly affects caregivers lives. It puts the caregiver at risk fo r both mental and physical heal th problems. Caregiving of cognitively impaired individuals is a highly stressful activity associated with depression, impaired sleep, and immune and endocrine effects. The purpose of the proposed study was (a) to explore sleep patterns in high and low stressed caregivers of cognitively impaired co mmunity-dwelling individuals and (b) to explore the proposed link between stress of caregiving role and the phys iologic/psychologic awakened changes that occur in caregivers wi th high and low levels of stress. A nonexperimental prospective cr oss-sectional design was used to explore sleep patterns and the physiologic/psychologic ch anges that occur in caregive rs. Thirty caregivers were recruited and a series of instruments was used to measure stress, depression, sleep disturbances and immune and endocrine function. Almost 40% of the caregivers showed signs of possible clinical depression. The caregivers tended to have a high le vel of stress and perceived thei r health as good or fair. The caregivers also displayed a high level of day time sleepiness. There was no significant relationship between caregiving st ress and sleep diary sleep e fficiency (r = -.073, p= 354) and 13

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actigraphy sleep efficiency (r = -.127, p= .256). There was no significant relationship between caregiving stress and area under curve mean daytime salivary co rtisol in respect to ground (r = -.094, p = .339) and mean total salivary Ig A (r = .090, p=.328). There was no significant relationship between high stressed caregivers and sleep diary sleep e fficiency (F=.171, p=.915) and actigraphy sleep efficiency (F=.598, p=.623). Secondary analyses were conducted using the sleep data on nights 2 and 3 and the cortisol and IgA data on Days 3 and 4. On Day 3 the caregivers had increased actigra phy total wake time and decreas ed actigraphy sleep efficiency (r = -.407, p=.014) and Day 4 (r = -.407, p=.014). Th e caregivers also ha d increased actigraphy total wake time and decreased sleep diary sl eep efficiency on Day 3 (r = -.387, p=.021) and Day 4 (r = -.360, p=.033). The caregivers also had increased cortisol after awakening and decreased actigraphy sleep efficiency (r = -.590, p=.002) on Day 3. 14

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CHAPTER 1 INTRODUCTION Alzheimers Caregivers Alzheimers disease (AD) is a growing public health crisis. Every 72 seconds, someone in America develops Alzheimers disease; by mid-century, someone will develop Alzheimers disease every 33 seconds (Alzheimers Associati on, 2007). It is an age-related disorder, with prevalence increasing in older popula tions. This is a particularly urgent problem in light of the fact that the elderly population in the United States and the wo rld is growing rapidly. An estimated 5.1 million Americans had Alzheimers disease in 2007. This number included 4.9 million people over age 65 and older (A lzheimers Association, 2007). More than 7 out of 10 people with Alzheimers disease live at home, where family and friends provide almost 75% of their care (Alzheimers Association, 2007). Almost 10 million Americans are caring for a person with Alzheimers disease or another dementia (Alzheimers Association, 2007). In the United States, care se rvices to the elderly are provided by informal caregivers, such as spouses and adult children (Zhu et al., 2006) Informal caregivers of individuals with AD play a major role in supporting impaired elders throughout the course of the illness and are one of our health care systems greatest resources (Gibson & Houser, 2007). Although no standard definition of caregiving exists there is general consensus that it involves provision of extraordinary care, exceeding the bounds of what is normative or usual in relationships (Mohr, Lafuze, & Mohr, 2000; Zhu et al., 2006). Caring for a family member with AD is one of the most distre ssing and challenging experiences one can endure. Alzheimers disease is a tragic, debilitati ng, chronic illness with unpredictable clinical cour ses that average nearly 10 years from diagnosis to death (Alzheimers Association, 2005). The tragedy of AD is compou nded by the toll it takes on the caregiver, who 15

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must cope with the long-term disabling physical and behavioral problems associated with the care recipients illness. Providi ng care to an elderly relative ofte n restricts the personal life, social life, and employment of th e caregiver. Their ta sk is not an easy one and is fraught with emotional strain, distress, and physical e xhaustion (Cohen, 1990; Schul z & Martire, 2004; Sleath, Thorpe, Landerman, Doyle, & Clipp, 20 05; Vitaliano, Russo, Young, Teri, & Maiuro, 1991). Caregivers may have less time to spend with friends, to fulfill other family obligations, or to pursue leisure activities (G illeard, Belford, Gilleard, Whittick, & Gledhill, 1984; Kosberg & Cairl, 1986; Mohr et al., 2000). These challenges often affect the health and income of caregivers of people with Alzheimers and other de mentias. Over 40% of these caregivers report high levels of emotional stress (Alzheimers A ssociation, 2007). Caregi ving typically involves a significant expenditure of time, energy, and m oney over potentially long periods of time; it involves tasks that may be unpleasant and uncomfo rtable and are psychologically stressful and physically exhausting. Caregiver Burden Caregiver burden is defined as the physical, psychologic, or em otional, social and financial problems that can be experienced by family members caring for impaired elderly adults (Gilleard et al., 1984; Kasuya, Polga r-Bailey, & Takeuchi, 2000; Sleath et al., 2005; Stuckey, Neundorfer, & Smyth, 1996). There is a substantial body of literature that documents the negative psychological, physical, and social consequences associated with providing care to a relative with AD (AARP, 2004; Alzh eimers Association, 2007; Kasuya et al., 2000). Informal caregivers are more likely to report that thei r health is in fair or poor condition than noncaregivers (Ho, Collins, Davis, & Doty, 2005; Pinquart & Sorens en, 2003; Schultz & Carnevale, 1996; Schulz & Beach, 1999; Sc hulz et al., 2002; Sherwood, Given, Given, & von Eye, 2005). They are also more likely to use psychotropic drugs (Baumg arten et al., 1992; Buhr, 16

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Kuchibhatla, & Clipp, 2006; Kiecolt-Glaser, Du ra, Speicher, Trask, & Glaser, 1991; Skjerve, Bjorvatn, & Holsten, 2004), engage in fewer health-promoting behaviors and self-care over the course of caregiving (Gallant & Connell, 1997; Savundranayagam, Hummert, & Montgomery, 2005) and report frequent utilization of medical care (Draper, Poulos, Cole, Poulos, & Ehrlich, 1992; Kiecolt-Glaser et al., 1991; Savundranayagam et al., 2005). Most studies have found elevated rates of symptoms of anxiety and depr ession in caregivers (Ho et al., 2005; Kasuya et al., 2000; Sleath et al., 2005) compared to agematched controls or population means, whether symptoms were measured by self-report or by structured diagnostic interviews (Schultz & Carnevale, 1996). Caregivers of demented patient s also have financial pr oblems and heightened levels of stress and psychological morbidity compared to caregivers of nondemented elderly persons (Alzheimers Association, 2007; Bedar d, Koivuranta, & Stucke y, 2004; Clyburn, Stones, Hadjistavropoulos, & Tuokko, 2000). Furthermore, caregivers are often faced with difficult caregiving tasks and behavior problems of demented care recipients, such as verbal and physical aggression and confusion (Alzheimer's Association, 2007; Buhr et al., 20 06; Teri et al., 1992). One health area that has received little empi rical study in caregiving research is sleep. Sleep is an important domain that is likely to be affected adversely by the task of providing care to a family member with cognitive impairments. Getting a good nights sleep is a high priority for most people. However, for those with AD and their caregivers, an uninterrupted nights sleep can be an unusual luxury. Problems sleeping at night can be very draining for the family members caring for AD patients living at home. One possible explanation for the changes in caregiver sleep is a re sult of altered sleepwake patterns in care recipient. Disturbed sleep in AD care recipient is a major medical problem (Allen, Seiler, Stahelin, & Sp iegel, 1987; McCurry, Logsdon, Teri, & Vitiello, 2007; Pruchno, 17

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Peters, & Burant, 1995; Pruchno & Potashni k, 1989; Wilcox & King, 1999). There is accumulating evidence that greater di sease severity is associated with greater sleep disturbance (McCurry et al., 2007; Strine & Chapman, 2005; Vitiello & Borson, 2001). In persons with AD, sleep and nighttime behavioral disturbances in clude wandering, day/night confusion, getting up repeatedly during the night, and nightmares or ha llucinations (Ayalon et al., 2006; Gaugler et al., 2000; Hope, Keene, Gedling, Fairburn, & Jacoby, 1998; McCurry et al., 2007; Pollak & Perlick, 1991; Smith, 2004; Strine & Chapman, 2005). The burden of nightly care of the AD patient taxes caregivers because of the unpredictability of the care recipients behavior, the need for constant vigilance to monitor wandering outside the home, and the stress and depression that ensuing sleep loss can cause (Bliwise, 2004; McCurry et al., 1999; Moran et al., 2005). Finally, caregivers are likely to be awakened by sleep disr uptions of their care r ecipients, with negative consequences of their own sleep. Importance of Sleep Sleep is an important component of mammalian homeostasis and is vital for the survival of self and species (Dew et al., 2003; McCurry et al., 1999; Vgontzas & Ch rousos, 2002). It is also of great importance for health and the quality of life. It is estimated that 50 to 70 million Americans chronically suffer from a disorder of sleep and wakefulness, hindering daily functioning and adversely affecti ng their health and longevity. The cumulative effects of sleep loss and sleep disorders represent an under-recogn ized public health problem and have been associated with a wide range of health conseque nces including an increas ed risk of hypertension, diabetes, obesity, depression, hear t attack, and stroke (Colten & Altevogt, 2006). Hundreds of billions of dollars a year are sp ent on direct medical costs rela ted to sleep disorders such as doctor visits, hospital services prescriptions, and over-the-cou nter medications (Colten & Altevogt, 2006). 18

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There is a strong association be tween sleep and illness or ea rly death (Anselm, Gauthier, Beanlands, & Haddad, 2008; Dew et al., 2003; Kripke, Simons, Garfinkel, & Hammond, 1979; Manocchia, Keller, & Ware, 2001; Morgan, Heal ey, & Healey, 1989; Strine & Chapman, 2005; Wingard & Berkman, 1983). Mortality is at le ast 1.6 to 2 times higher among elderly persons with sleep disorders than in those who sleep we ll, and the excess mortality is related to the predominant causes of death, such as heart diseas e, stroke, cancer and su icide (Dew et al., 2003; Ferrie et al., 2007; Morgan et al., 1989; Wingard & Berkman, 1983). The excess mortality is more pronounced in elderly persons who have be gun to experience sleep problems later in life than in those who have slept poorly since earlie r in life (Dew et al., 2003; Ferrie et al., 2007; Morgan & Clarke, 1997). However, poor sleep is not only associated with shortened life expectancy. It also shows a ne gative interaction with many soma tic and psychiatric diseases and symptoms, as well as causing deterioration in the quality of life (Asp lund, 1999; Manocchia et al., 2001; Strine & Chapman, 2005). Sleep and Older Adult Sleep quality is an important parameter of health-related quality of life in older adults, and it is possibly a correlate of c ontinuing adaptability in later li fe (Dew et al., 2003; Dew et al., 1994; Ohayon, Carskadon, Guilleminault, & Vitiell o, 2004). Sleep complaints are common in all age groups. Older adults, however, are particularly vulnerable. A seri es of studies of the sleep characteristics of healthy older adults suggest the importan ce of sleep quality as a marker of overall health, well-being, and adaptability in later life. In a 2-ye ar observational study of laboratory-and diary-based sleep measures in two groups of h ealthy volunteers (ages 60-74 and age 75 and older), Hoch and colleagues (1994) found that sleep efficiency (defined as the amount of sleep, given the time in bed), deteriorated to a greater degree over 2 years among subjects ages 75 and older than in subjects ages 60 and 74. 19

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In a study of over 9,000 community-dwelling adults over age 65 years, 42% of subjects reported difficulty in initiating and maintaining sleep (Foley et al., 1995). At follow up three years later, nearly 15% of the 4,956 participants without symptoms of difficulty sleeping at baseline reported chronic difficulties at base line; approximately 50% no longer had symptoms. The discontinuation of insomnia symptoms was a ssociated with improved self-perceived health (Foley, Monjan, Simonsick, Wallace, & Blazer, 1 999). A recent comprehensive review reported that in noninstitutionalized elderly respondents, di fficulties initiating sleep were reported in 15% to 45%, disrupted sleep in approximately 20% to 65%, early morning awakenings in 15% to 54%, and nonrestorative sleep in approximately 10% (Ohayon, 2002). In most studies, the prevalence of sleep did not significantly increase with age, but was higher in women than in men (Ohayon, 2002). Sleep recordings of older adults, as compar ed with younger adults, have shown that older adults have less deep sleep and less REM (rapid eye movement) sleep. However, a recent metaanalysis looking at 65 studies, representing 3,657 subjects age 5 years to 102 years, suggested that these age-related sleep changes are alrea dy seen in young and middle-aged adults, with the percentage of slow-wave sleep lin early decreasing at a rate of approximately 2% per decade of age up to age 60 years (Ohayon et al., 2004) Studi es that included only elderly participants did not find changes in percentage of slow-wave sl eep. Rather, sleep remained relatively consent from age 60 to the mid-90s, except for sleep effici ency which continued to decrease. The metaanalysis also showed that as slow-wave sleep and REM sleep decreased, more of the night was spent in lighter stages of sleep (Ohayon et al., 2004). Nevertheless, these changes in sleep, on thei r own, do not account for most of the sleep complaints of the older adult. Rather, the sleep difficulties are, in part, a result of the older 20

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adults decreased ability to maintain sleep. The ca uses of the decreased ability to maintain sleep are multifactorial and include the influence of me dical and psychiatric illness and medications on sleep, changes in the timing and consolidation of sleep as a re sult of changes in the endogenous circadian clock, and the presence of other sleep disorders (Ancoli-Israel & Ayalon, 2006). Sleep disturbances can have significant, serious consequences. Sleep problems are associated with increased risk of falls in the older adult, even after controlling for medication use, age, difficulty walking, difficulty seei ng, and depression (Brassington, King, & Bliwise, 2000). Studies have shown that patients with di fficulty sleeping reported as more symptoms of depression and anxiety, than those with no sleep difficulties. These patients were more likely to have slower reaction times, poor er balance, and worse memory than matched control subjects (Hauri, 1997). Chronic sleep difficulties at any age can lead to deficits in attention, response times, shortterm memory, and performance level (Walsh, Benca, & Bonnet, 1999). Furthermore, another study (Dew et al., 1994) found that inefficient sleep (i.e., fragmented sleep with frequent interruptions) in the very old (a ge 75 and over) predicted future declines in measures of mental and physical adaptation in older age, including diminished subjective sleep quality, fewer soci al activities, greater depressi ve symptoms, and more chronic medical burden. Dew and colleagues (2003) also re ported that after controlling for age, sex, and baseline medical burden, healthy elders with prolonged sleep latencies (>30 minutes) had 2.1 greater risk of death over a median follow-up inte rval of 13 years. Additionally, in the same study, participants with poor sleep efficiency (<80%) had 1.9 greater risk of mortality; patients with either too much or too little REM sleep percent (<16.1% or >25.7%) had 1.7 greater risk of mortality (Dew et al., 2003). 21

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Sleep in older adults becomes lighter with age. However, healthy olde r adults rarely have sleep complaints (Foley, Ancoli-Israel, Britz, & Walsh, 2004). In a study of several thousand older adults, 57% had chronic insomnia, versus 12% with no insomnia, but the chronic insomnia was more prevalent among those with depre ssed mood, respiratory symptoms, fair-to-poor health, and physical disability (F oley et al., 1995). There was another study that concluded that aging, per se, does not cause the sleep disturba nces (Foley et al., 1999). Rather, the sleep disruptions seen in this population are secondary to other factors, or co morbid with medical and psychiatric illness, medication use, circadian rhyt hm changes, and other sleep disorders such as sleep disordered breathing and REM beha vior disorder (Foley et al., 1999). Causes for Sleep Changes in Dementia Caregiver Sleep is an important domain that is likel y to be affected adversely by the task of providing care to a family member with cogn itive impairments (McCurry et al., 2007; McKibbin et al., 2005; Pruchno & Potashnik, 1989; Wilcox & King, 1999). Several factors could lead to impaired sleep among caregivers, in addition to altered sleep-wake cy cles of person with dementia (PWD). First, symptoms of stress and depression, co mmonly experienced by caregivers are associated with impaired sleep (Berkman & Breslow, 1983; Braekhus, Oksengard, Engedal, & Laake, 1998; Buysse, Reynolds, Mo nk, Berman, & Kupfer, 1989; Caswell et al., 2003; Kesselring et al., 2001; Mc Curry et al., 2007; McKibbin et al., 2005; Paulsen & Shaver, 1991). Second, it is well establis hed that individuals with deme ntia commonly experience sleep disruptions, and these disruptions are viewed problematic by caregivers (McCurry et al., 2007; McKibbin et al., 2005; Prinz et al., 1982; P. Rabins, 1989; Rabins, Mace, & Lucas, 1982). Caregivers are likely to be awakened by the sleep disruptions of their care recipients, with negative consequences of their own sleep. Third, it has been reported that caregivers inability to sleep is correlated with caregiver stress and patient institutionalizati on (Bergman-Evans, 1994; 22

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Chenier, 1997; Hope et al., 1998; McCurry, Gi bbons, Logsdon, Vitiello, & Teri, 2005; McCurry et al., 2007; Pollak & Perlick, 1991). Finally, these factors could interact to form a self-perpetuating cycle of sleep disturbance. That is, caregivers could experience negative th oughts and feelings that would interfere with resuming sleep (McCurry et al., 2007; Wilcox & King, 1999). Over time, the sleep deprivation could cause daytime fatigue, stress, and depression that could then further interfere with sleep, thus exacerbating the problem (McCurry et al., 2007; Teel & Pre ss, 1999; Wilcox & King, 1999). Of all these problems being awakened by th e patient at night has been identified as one of the most disturbing sleep ir regularities faced by dementia caregivers (McCurry et al., 1999; McCurry et al., 2007) and as stated above is a ma jor cause of patient institutionalization (Coehlo, Hooker, & Bowman, 2007; Hope et al., 1998; Pollak & Perlic k, 1991). Next, the health consequences of disrupted sleep will be discussed. Consequences of Fragmented Sleep There are several studies that have document ed health consequences due to fragmented sleep (Anselm et al., 2008; Sc hwartz et al., 1999; Strine & Chapman, 2005; Van Cauter, 2005; Vioque, Torres, & Quiles, 2000). Fragmented sleep has been linked to cor onary heart disease, obesity, and diabetes mellitus. Cardiovascular risk is greater in individuals who perceive their sleep as poor (Anselm et al., 2008; Schwartz et al., 1999). Ayas and colleagues (2003) found in a prospective study of women a significant positiv e association between reported sleep duration and incidence of coronary heart disease. Short and long sleep durations we re associated with an increased risk of incident coronary heart disease. There has been an increase in the prevalence of both obesity and se vere obesity linked to sleep disturbances. In recent years, an incr easing number of epidem iological studies have reported an association between sleep duration and body mass inde x (BMI). A 2000 report from 23

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Spain observed that those reporting sleeping 6 hours (h) or less per day had an increased risk of obesity after controlling for sex, age, and other factors, and th is group also had a higher mean BMI (Schmid et al., 2007; Vioque et al., 2000). Intriguingly, the dramatic increase in the inci dence of obesity and diabetes seems to have developed over the same period of time as the progressive decrease in self-reported sleep duration (Flegal, Carroll, Kuczmarski, & Johnson, 1998; Flegal, Ca rroll, Ogden, & Johnson, 2002; Van Cauter, 2005). Taken together, sleep loss affects millions of individuals in our modern society, and recent studies have provided evidence in support of it s deleterious impact on glucose metabolism and appetite regulation (Spi egel, Knutson, Leproult, Tasali, & Van Cauter, 2005). Stress Response Stress is defined as any stimulus that distur bs or interferes with the normal physiological equilibrium of an organism (Oxford, 1999). Stre ss is a state of threatened homeostasis provoked by a psychological, environmental, or physiologic stressor (Chrousos & Gold, 1992; Peterson et al., 1991). There are two well recognized stress response sy stems that are activated when a stimulus is perceived as a stre ssor (King & Hegadoren, 20 02). These are the sympathetic or autonomic response system and the hypothalamic pituitary adrenal (HPA) axis (King & Hegadoren, 2002; Kumsta, Entringer, Hellhammer, & Wust, 2007). The activation of the sympathetic system occurs within seconds with resu ltant increases in the secretion of epinephrine from the adrenal medulla and norepinephrine from peripheral and central sympathetic neurons (King & Hegadoren, 2002; Kumsta et al., 2007). The activation of the HPA axis occurs more slowly within minutes or hours with increases occurring in release of corticot rophin-releasing hormone (CRH) from the 24

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hypothalamus. CRH stimulates the pituitary to release adrenocorticotropin-releasing hormone (ACTH) into the systemic circulation, which in tu rn stimulates the adrenal cortex to release the glucocorticoid, cortisol (King & Hegadoren, 2002; Kumsta et al., 2007). Chronic or extreme activation can lead to changes in HPA axis activity, as eviden ced by abnormal cortisol levels, which may in turn increase vulnerability to developing health problems (King & Hegadoren, 2002; Kumsta et al., 2007). Uncontrollable, unpredictable, and constant stress has far-reaching consequences on our physical and mental health (Black, 2006). Ma ny illnesses such as obesity, cardiovascular disease, and diabetes mellitus type II are influe nced by chronic or overwhelming stress (Black, 2006). One must remember that caring for a fam ily member with AD is one of the most distressing and challenging experiences one can endure. Caregiving involves a significant expenditure of time, energy, and money over potentially long periods of time. It involves tasks that may be unpleasant and uncomfortable and are psychologically stressful and physically exhausting. Informal caregivers ar e more likely to report that thei r health is in fair or poor condition than noncaregivers (Pi nquart & Sorensen, 2003; Schultz & Carnevale, 1996; Schulz & Beach, 1999; Schulz & Martire, 200 4; Schulz et al., 2002; Sherwood et al., 2005; Sleath et al., 2005). Statement of the Problem The purpose of the proposed study is to explor e sleep patterns in st ressed caregivers of cognitively impaired community-dwelling individuals who worry about nighttime activity and to explore the proposed link between stress of car egiving role and the physiologic/psychologic changes that occur in stressed caregivers with high and low levels of stress that worry about nighttime activity. 25

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Specific aim 1: To describe differences in sleep patterns between caregivers with high and low levels of stress. o Hypothesis 1a: Caregivers with higher levels of stress will have more sleep fragmentation (lower sleep efficiency a nd higher number of awakenings) and more daytime sleepiness. Specific aim 2: To describe daytime salivary cor tisol levels among caregivers with high and low levels of stress. o Hypothesis 2a: Caregivers with higher levels of stress will have more abnormal daytime salivary cortisol levels. Specific aim 3: To describe IgA levels among caregiv ers with high and low levels of stress. o Hypothesis 3a: Caregivers with higher levels of stress will have decreased salivary IgA levels. Specific aim 4: To test whether the Caregiver and In effective Sleep model predicts the relationship between caregivers with high and low levels of stress, fragmented sleep, and caregiver well-being. o Hypothesis 4a: The relationship between high stressed caregivers and fragmented sleep will be moderated by worrying about sleeping through nighttime activity. o Hypothesis 4b: Fragmented sleep will mediate th e relationship between level of caregiver stress and daytime salivary cortisol levels. o Hypothesis 4c: Fragmented sleep will mediate th e relationship between level of caregiver stress and salivary IgA levels. Introduction to Stress, Coping, and Adaptation Conceptual Framework In order to contribute to a more coherent and comprehensive body of knowledge and to advance nursing science, it is recommended that studies should be based on a conceptual and theoretical model (Fawcett, 1995). A theoretical model is a description of th e variables being analyzed in a given situation, together with a statement of the researchers hypotheses concerning the relationships among the variable s. Models are typically accompanied by a pictorial representation of these variables and th eir interrelationships (Br itt, 1997). The Stress, 26

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Coping, and Adaptation Model has been used to c onceptualize the important constructs for this study. The theoretical framework of this study is constructed from specific concepts identified in the empirical and theoretical literature on st ress, coping, and adaptation (Lazarus & Folkman, 1984). Lazarus and Folkman began to develop thei r model in 1966, and it is one of the most prominent theories of stress (Lazarus & Fo lkman, 1984). The Stress, Coping, and Adaptation Model presents stress as a transaction between th e person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being (Lazarus & Folkman, 1984). At the heart of this model are two processes: appraisal and coping. Appraisal has to do with the individuals evaluation of the persona l significance of a given event and the adequacy of the individua ls resources for coping. It infl uences emotion and subsequent coping. Coping refers to the though ts and behaviors a person uses to regulate distress (emotionfocused coping), manage the problem causing dist ress (problem-focused coping), and maintain positive well-being (meaning-based coping) (Laza rus & Folkman, 1984). Coping influences the outcome of the situation and the individuals appraisal of it (Lazarus & Folkman, 1984). The Stress, Coping, and Adaptation model was chosen because the assumptions, conceptions, relational statements, and propos itions are logically congruent with the phenomenon of interest, and the mid-range theory is well represented in the caregiver literature (Bakas, Champion, Perkins, Farran, & Williams 2006; Coon et al., 2004; DiBartolo & Soeken, 2003; Haley et al., 2004; Hebert et al., 2003; Hu ang, Musil, Zauszniewski, & Wykle, 2006). There have also been several books published by Lazarus further explaining the theoretical model (Lazarus, 1994, 1999). The theoretical model will be pr esented by explaining stress, appraisal and coping by synthesi zing relevant literature. 27

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Stress, Coping, and Adaptation model Figure 1-1 displays the Stress, Coping, and Ad aptation model in pictorial format showing the variables and their interrelationships. This model has a transactional, process-oriented outlook, because the authors are look ing at the same persons at di fferent times or under different conditions (Lazarus & Folkman, 1984). This model allows the researcher to observe or infer what the person is thinking and doing at various points during an encount er or in different encounters. It looks at phenom ena within persons as well as across persons within the same research design (Lazarus & Folkman, 1984). The authors have also developed this model to be used in interdisciplinary research. There are five types of major variables in this model: stress, appraisal, coping, person and environment anteced ents of stress and coping and short-and longterm adaptational outcomes. Next, these five major variables will be defined in further detail. Stressor Stressors are demands made by the internal or external environment that upset balance or homeostasis, thus affecting physic al and psychosocial well-being a nd requiring action to restore balance or equilibrium (Lazarus & Cohen, 1977). Early work on stress focused on physiological reactions to stressful stimuli. Cannon (1932) is credited with firs t describing the fight-or-flight reaction to stress. Hans Selye, the father of modern stress research, extended Cannons studies with clinical observations and laboratory research. He hypothesized that living organisms (rats and people) exhibited nonspecifi c changes in response to stresso rs, labeled as a three-stage General Adaptation Syndrome (GAS). This syndrom e consists of an alarm reaction, resistance, and exhaustion (Selye, 1956). Each stage evok es both physiological and behavioral responses, and without curative measures, physical a nd psychological deterioration will occur. Another major stream of stre ss research in the 1960s and 1970s focused on identifying and quantifying potential stressors, or stressful life events. Holmes and Rahe (1967) developed 28

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the Social Readjustment Rating Scale (SRRS), a t ool to measure stressful life events. Studies showed that people with high scor es on the SRRS had more illness episodes than did those with low scores. This scale stimulated a subs tantial body of research despite numerous methodological limitations (Dohrenwend & Dohrenwend, 1981). Beginning in the 1960s and 1970s, stress was considered to be a transactional phenomenon dependent on the meaning of the stimulus to the perceiver (Antonovsky, 1979; Lazarus, 1966). The central concept in models developed during this time is that a given event or situation is perceived in di fferent ways by various individual s. Moreover, these perceptions rather than the objective stressorsare the main determinants of effects on subsequent behaviors and on health status. Some researchers in the fi eld of occupational stress and health used this concept as a foundation for a model that viewed occupational stress as a result of the interaction between individual workers characteristics and the work environment, or the personenvironment fit (French & Kahn, 1962; House, 1974). These lines of theory led to an examination of possible buffering, or moderating fact ors, and in particular to a focus on the role of social support (Cohen & Wills, 1985). Next, appraisal will be defined. Appraisal The appraisal process is based on the assump tion that people are constantly appraising their relationship to the environment. The stre ss process begins when the person becomes aware of a change or a threatened change in the st atus of current goals and concerns (Folkman & Greer, 2000). Psychological stre ss is a particular relationshi p between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being (Lazarus & Folk man, 1984). The appraisal of this actual or threatened change includes an evaluation of it s personal significance, which is called primary 29

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appraisal, and evaluation of the options for copi ng, which is called second ary appraisal (Folkman & Greer, 2000). The theory approaches psychological stress through the examination of two critical processes that mediate the person-environment relationship: cognitive appraisal and coping (Lazarus & Folkman, 1984). Cognitive appraisal can be most readily understood as the process of categorizing an encounter, and its various f acets, with respect to its significance for wellbeing. It is not information processing per se, in the sense used by Mandler (1975) and others, although it partakes of such processing. Rather, it is largely evaluative, focused on meaning or significance, and takes place continuously during waking life (Lazarus & Folkman, 1984). It is a process through which the person evaluates whether a particular encounter with the environment is relevant to his or her wellbeing, and if so, in what ways. Lazarus and Folkman (1984) have made a basic distinction between primary and secondary appraisal id entifying the two main evaluative issues of appr aisal, namely, Am I in trouble or being benefited, now or in the future, and in what way? and What if anything can be done about it? Person and Environment Antecedents The two main sets of variables jointly influenc ing whether the appraisa l is that of threat or challenge are environmental and personality centered (Lazarus & Folkman, 1984). These variables influence appraisal by (a) determining what is salient for well-being in a given encounter, (b) shaping the persons understanding of the event, and in consequence his or her emotions and coping efforts; and (c) providing the basis for evaluating outcomes (Lazarus & Folkman, 1984). Some environmental circumstances impose too great a demand on a persons resources, whereas others provide consider able latitude for available sk ills and persistence, thereby influencing whether threat or challenge will occur. The substantive environmental content 30

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variables having an influence consist of diverse situationa l demands, constraints, and opportunities (Lazarus & Folkman, 1984). Formal envi ronmental variables c onsist of situational dimensions, such as novelty versus familiarity, pr edictability versus unpred ictability, clarity of meaning versus ambiguity, and temporal fact ors such as imminence, timing, and duration (Lazarus & Folkman, 1984). Personality dispositions influencing whethe r a person is more prone to a threat or challenge include self-confidence or self-efficacy (Lazarus & Folkman, 1984). The more confident we are of our capacity to overcome dange rs and obstacles, the more likely we are to be challenged rather than threatened; a sense of inadequacy, however, promotes threat. Nevertheless, and consistent with a relational an alysis of stress, in any transaction both the environmental circumstances and the personality dispositions combine in determining whether there will be a threat or cha llenge appraisal (Lazarus & Folk man, 1984). Primary appraisal will now be further defined. Primary appraisal In primary appraisal, the person evaluates whethe r he or she has anythi ng at stake in this encounter. For example, is there potential harm or benefit with respect to commitments, values, or goals? Is the health or well-be ing of a loved one at risk? Is th ere potential harm or benefit to self-esteem? (Lazarus & Folkman, 1984). Primar y appraisal is influenced by the persons beliefs, values, and commitments. There are three kinds of primary appraisa l, irrelevant, benignpositive, and stressful. An irrelevant encounter has no significance for ones well-being, and the person has no stake in its outcome; in a be nign-positive encounter only a good outcome is signaled (Lazarus & Folkman, 1984). Stressful appraisals are characteri zed by threat, challenge, or harm-loss. Threat refers to the potential for harm or loss; challenge refers to the potential for growth, mastery, or 31

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gain; and harm-loss refers to in jury already done, as in harm to a friendship, health, or selfesteem (Lazarus & Folkman, 1984). Because people vary in these attributes, a given situation, such as a spouse diagnosed with Alzheimers Dis ease, is appraised by some primarily as harm, by others as a threat, and by others as primarily a challenge. Next, secondary appraisal will be discussed in greater detail. Secondary appraisal When we are in jeopardy, whether it be a thr eat or a challenge, something must be done to manage the situation. In that case, a furt her form of appraisal b ecomes salient, that of evaluating what might and can be done, whic h is secondary appraisal (Lazarus & Folkman, 1984). In secondary appraisal, the person evaluates what if anything can be done to overcome or prevent harm or to improve the prospects for bene fit. Various coping options are evaluated, such as altering the situation, accepting it, seeking more information, or holding back from acting impulsively and in a counterproduc tive way (Lazarus & Folkman, 1984). Secondary appraisals of coping opt ions and primary appraisals of what is at stake interact with each other in shaping the degree of stress and the strength and quality (or content) of the emotional reaction. Primary and secondary appraisal converge to determine whether the personenvironment transaction is regarded as signifi cant for well-being, and if so, whether it is primarily threatening (containing the possibility of harm or loss), or challenging (holding the possibility of mastery or bene fit) (Lazarus & Folkman, 1984). Ne xt, coping will be discussed in greater detail. Coping is defined as the persons constantly changing cognitive behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the persons resources. There are th ree key features of this defi nition (Lazarus & Folkman, 1984). First, it is process oriented, meaning that it fo cuses on what the person actually thinks and does 32

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in a specific stressful encounter and how this changes as the en counter unfolds. Second, coping is contextual, that is it is influenced by the pe rsons appraisal of actual demands in the encounter and resources for managing them. The emphasis on context means that particular person and situation variables togeth er shape coping efforts. Third, ther e are no a priori assumptions about what constitutes good or bad coping; coping is defi ned simply as a persons efforts to manage demands, whether or not the efforts are successful (Lazarus & Folkman, 1984). Coping has two widely recognized major func tions: regulating stressful emotions (emotion-focused coping) and altering the troubled person-environment relation causing the distress (problem-focused coping) (Lazarus & Folkman, 1984). Two studies have provided strong empirical support for the id ea that coping usually includes both functions. Both forms of coping were represented in over 98% of the stressful encounters reported by middle-aged men and women (Folkman & Lazarus, 1980) and in an average of 96% of the self-reports of how college students coped with a stressful ex amination (Folkman & Lazarus, 1985). Problemfocused coping was used more frequently in encounters that were appr aised by the person as changeable. In contrast, emotion-focused coping was used more frequently in encounters that were appraised as unchangeable. Emotion-focused coping A wide range of emotion-focused forms of c oping is found in the literature. One large group consists of cognitive processes directed at lessening emotional distress and includes strategies such as avoidance, minimization, distancing, selective attention, positive comparisons, seeking emotional support, wishful thinking, self-blame and wresting positive value from negative events (Lazarus & Folkman, 1984). A smaller group of cognitive strategies is directed at increasing emotional distress. Some individuals need to feel worse before they can feel better; 33

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in order to get relief they first need to experien ce their distress acutely and to this end engage in self-blame or some other form of punishment (Lazarus & Folkman, 1984). Certain cognitive forms of emotion-focused coping lead to a change in the way an encounter is construed without ch anging the objective s ituation. These strategies are equivalent to reappraisal. Consider the following cogniti ve maneuvers that are commonly used to reduce threat, I decided there are more important things to worry about and I considered how much worse things could be (Lazarus & Folkman, 1984) In each case, threat is diminished by changing the meaning of the situation-a coping effort qua reappraisa l (Lazarus & Folkman, 1984). Problem-focused coping Problem-focused coping refers to efforts direct ed at solving or managing the problem that is causing distress. Problem-focused efforts are often directed at defining the problem, generating alternative solu tions, weighting the alternative solutions in terms of their costs and benefits, choosing among them, and acting (Lazaru s & Folkman, 1984). It includes strategies for gathering information, making decisions, planning, and resolving conflicts; it includes efforts directed at acquiring resources (e.g., skills, tools, and knowledge) to help deal with the underlying problem. It also incl udes instrumental, situation speci fic, and task-oriented actions (Lazarus & Folkman, 1984). Greater control (secondary appraisal) is associ ated with higher leve ls of problem-focused coping, such as information search, problem solvi ng, and direct action to solve a problem. Less control is associated with higher levels of emotion-focused coping, such as escape and avoidance, the seeking of social support, dist ancing, or cognitive reframing (Lazarus & Folkman, 1984). People vary their coping depending on the in tensity of their emo tion response and their 34

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ability to regulate it, the opportunities inherent in the situation for problem solving, and changes in the person-environment relationship as th e situation unfolds (L azarus & Folkman, 1984). Whether as a result of coping, changes in th e environment that may or may not be related to the event, or changes in the individual the relationship between the person and the environment continues to unfold. Events that are brought to a clear c onclusion lead to an appraisal of the outcome as favorable or unfavor able. A favorable event outcome is likely to lead to a benefit appraisal, positive emotion, and the conclusion of c oping activity (Lazarus & Folkman, 1984). The final variables of the mode l, immediate and long-term effects, will be discussed. Immediate and Long-Term Affects The issue of great concern to researchers in this field is how appr aisal and coping affect three major classes of adaptational outcom essocial functioning, morale, and somatic health/illness (Lazaru s & Folkman, 1984). Social functioning can be defined as the ways the individual fulfills his/her various roles, as satisfaction with interpersonal relationships, or in terms of the skills necessary for maintaining role s and relationships. A persons overall social functioning is largely determined by the effectiveness with which he or she appraises and copes with the events of day-to-day living (Lazarus & Folkman, 1984). Social functioning is thus influenced by many factors, including the pers ons autonomy, trust, intimacy, and so on, and cultural values and expectations regarding soci al roles and how they should be enacted. Social functioning over the long term is an extension of coping effectiveness in many specific encounters over the life course (Laza rus & Folkman, 1984). Problems exist in the assessment of social functioning, many of which ha ve to do with value j udgments as to what constitutes good social functioning. Many relati onships can withstand occasional errors of 35

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appraisal, but any relationship will be put to a severe test if ina ppropriate appraisa ls are frequent (Lazarus & Folkman, 1984). Morale is concerned with how people feel a bout themselves and their conditions of life (Lazarus & Folkman, 1984). Morale over th e long run probably depends on a tendency to appraise encounters as challenges, to cope w ith negative outcomes by putting them in a positive light, and, overall, effectively managing a wide range of demands (Lazarus & Folkman, 1984). An essential theme of the analysis of stress coping, and health that dominates thinking in behavioral medicine is that emotional states of all kinds and intensities accompany appraisals of harm, threat, and challenge (Lazarus & Folk man, 1984). The link with illness is the conventional one that massive bodily changes are associated with emotions, especially strong, negative ones such as fear and a nger. It is this theme that has given Selyes (1956, 1976) work on the physiology of stress great influence in beha vioral medicine and psychosomatics. There are three routes through which c oping can affect health includ ing influencing the frequency, intensity, duration, and patterning of neurochemical stress reactions; using injurious substances or carrying out activities that pu t the person at risk; and impeding adaptive health/illness-related behavior (Lazarus & Folkman, 1984). Overall, the relationships among morale, so cial functioning, and somatic health are complex. It is important to recognize that good fu nctioning in one sphere ma y be directly related to poor functioning in another and that good func tioning in one area does not necessarily mean that the person is func tioning well in all areas (Lazarus & Folkman, 1984). Conclusion In conclusion, the Stress, Coping, and Adapta tion model was chosen because it is one of the most prominent theories of stress (L azarus & Folkman, 1984). The assumptions, conceptions, relational statements, and propositions of this model are logically congruent with 36

PAGE 37

37 the phenomenon of interest, and the mid-range th eory is well represented in the caregiver literature (Bakas et al., 2006; Coon et al., 2004; DiBartolo & Soeken, 2003; Haley et al., 2004; Hebert et al., 2003). The concepts from the Stress, Coping, and Adaptation model will now be used to form the theoretical framework of this study, Caregiver and Ineffective Sleep, which will be discussed next.

PAGE 38

Causal Antecedents Mediating Processes Outcomes Stressors in Caregiving Situation Person Variables Values Commitments Beliefs 38 Figure 1-1. Theoretical framework for caregivers (adapted from Lazarus & Folkmans Theory of Stress & Coping, 1984) Environment Variables Situational demands Constraints Resources Ambiguity of harm Imminence of harm Primary Appraisal (Caregiving Appraisal) Secondary Appraisal (Ways of Coping) Immediate Effects Physiological & Psychological Changes Long-Term Effects Social Functioning Morale Somatic Health & Illness

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CHAPTER 2 THEORETICAL MODEL AND REVIEW OF LITERATURE Introduction The theoretical framework of this study builds on the Stress, Coping, and Adaptation model. The theoretical framework, the Caregiver and Ineffective Sleep, encompasses the desired components of the Stress, Coping, and Adaptation m odel and interprets them in a conceptually meaningful way. The Caregivers and Ineffectiv e Sleep framework has the potential to further our understanding of the challenges associated with caregiving and fragmented sleep. Next, the theoretical framework will be discussed in greater detail (Figure 2-1). Stressors in Caregiving Situation Person Variables The first two variables in the model, pers on and environment, will now be discussed. The two main sets of variables jointly influencin g whether the appraisal is that of a threat or challenge are environment and personalit y centered (Lazarus & Folkman, 1984). These variables influence appraisal by (a) determining what is salient for well-being in a given encounter; (b) shaping the persons understanding of the event, and in consequence his or her emotions and coping efforts; and (c) providing the basis for evaluating outcomes (Lazarus & Folkman, 1984). The person variables that will be examined in this model are age, gender, and race. The age, gender, and race differences of the human system have been found to be significantly related to the perception of caregiv er burden and the systems abilities. Thus, background demographic factors of human systems can vary the magnitude of caregiver burden and caregiver stress. By being aware of possible racial, ethnic, and cultural variations in the caregiving experience, health care professionals and policy makers can better meet the needs of 39

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the diverse groups of caregivers whom they serv e. In addition to these practical benefits, contrasting the caregiving experi ence of different groups can also enhance the theoretical understanding of this ex perience by distinguishing its universal elements from those that are mediated by norms, expectations, or experien ces of a given cultural group (Chun, Knight, & Youn, 2007; Gallagher-Thompson, Rabinowitz et al ., 2006; Gallagher-Thomps on, Shurgot et al., 2006; McCallum, Sorocco, & Fritsch, 2006; Patters on et al., 1998). Pers on variables in this study are race, age, and gender. Connell and Gibson (1997) reviewed 12 arti cles published between 1985 and 1996 that examined the impact of race, ethnicity, and culture on the caregiving experience. In their review, Connell and Gibson (1997) concluded that, comp ared with Caucasian caregivers, non-white caregivers tend to report lower bur den and more strongly-held beliefs about familial support. Since this time period another 21 articles on th is topic have been published. The studies reviewed by Janevic and colleagues (2001) also suggest that there are differences in the stress process, in psychosocial outcomes, and in va riables related to service utilization among caregivers of different racial, ethnic, national, and cultural groups. Depp and colleagues (2005) reported higher self-efficacy among Hispanic/Lati no caregivers in their study which parallels previous research on cultural values regarding caregiving among Mexican Americans (Phillips, Torres de Ardon, & Komenich, 2000). Another study by McCallum and colleagues compared European caregivers and African American caregivers. The st udy found that African American caregivers reported deriving more meaning in the act of caregiving, used their religious convictions more often while caregiving, and he ld stronger beliefs in the importance of caregiving, but these culturally based beliefs and behaviors faile d to result in (comparatively) better mental health (McCallum et al., 2006). 40

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Spouses make up the majority of caregivers (Adams, 2007; S. M. Allen, Goldscheider, & Ciambrone, 1999; Croog, Burleson, Sud ilovsky, & Baume, 2006), with wives more likely to be the primary caregiver (Houde, 2002). This may be due to social expectations as women may be perceived as more suitable to care for an il l spouse (Collins & Jones, 1997; Taylor, Ezell, Kuchibhatla, Ostbye, & Clipp, 2008). Husbands a nd wives who are caregivers appear to react differently to the caregiving role, with wives more negatively affected. Women often report a more negative impact of caregiving than do men on measures related to quality of life (Thomas et al., 2006; Yee & Schulz, 2000) burden (Gallicchio, Siddiqi Langenberg, & Baumgarten, 2002; Shanks-McElroy & Strobino, 2001; Simonelli et al., 2008), and strain and stress (Almberg, Jansson, Grafstrom, & Winblad, 1998; Pinquart & Sorensen, 2006) Compared to men, women have reported greater psychological and emotiona l symptoms such as worry, anxiety (Thomas et al., 2006; Yee & Schulz, 2000), and depressi on (Bookwala & Schulz, 2000; Pinquart & Sorensen, 2006; Yee & Schulz, 2000). Ther e is some evidence that women caregivers experience negative physical res ponses and health problems more than men (Lieberman & Fisher, 2001). Lieberman and Fisher (2001) reported that the health and well-being of female caregivers declined more than that of male caregivers following nursing home placement for their spouses. However, findings of greater impact on wome n are not universal. Other studies have found no difference by sex for burden, anxiety (S parks, Farran, Donner, & Keane-Hagerty, 1998), or strain and stress. The differences in findings may be due to the different outcomes used to measure the consequences of caregiving stress. Men have not be en studied adequately because of limitations in sampling design, with too few men in many caregiving samples (Houde, 2002). Many of the caregiving samples have been convenience samples, limiting the 41

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generalizability of the findings (Houde, 2002). Next, the environmental variables will be discussed in further detail. Environment Variables As stated earlier, some environmental ci rcumstances impose too great a demand on a persons resources, whereas others provide cons iderable latitude for available skills and persistence, thereby influencing whether threat or challenge will occur. The substantive environmental content variables having an infl uence consist of divers e situational demands, constraints, and opportunities (Lazarus & Folkman, 1984). In this study, the environment variables according to the model are defined as caregiver burden, caregiver with disturbed sleep and perceived stress. It is well known that providing care for a patient with dementia is stressful and has substantial demands on relatives (Bedard, Pedl ar, Martin, Malott, & Stones, 2000; Burns & Rabins, 2000; Pinquart & Sorensen, 2006). The na ture of the disease and its symptomatology are such that the demands placed on caregivers ar e heavy and their consequences diverse. The caregiver burden results from the physical, psychosocial or emotional, social and financial problems that can be experienced by family members caring for pe rsons with dementia (Bruce et al., 2005; Gonzalez-Salvador, Ar ango, Lyketsos, & Barba, 1999; Mahoney, Regan, Katona, & Livingston, 2005). It also includes embarrassment, overl oad, feelings of entrapment, resentment, isolation from so ciety (Pinquart & Sorensen, 2003, 2006; Zarit, Reever, & BachPeterson, 1980), loss of contro l, poor communication (Gonzal ez-Salvador et al., 1999; McGinnis, Schulz, Stone, Klinger, & Mercurio, 2006; R. G. Morris, Morris, & Britton, 1988), and work pressures (Bruce et al., 2005; Covinsky et al., 2001; Stephens, Kinney, & Ogrocki, 1991). 42

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The amount of or perception of caregiver burden is determined by many factors, including care recipient, car egiver, and environmental vari ables (Burns & Rabins, 2000; Oyebode, 2003; Pinquart & Sorensen, 2003, 2006; Rymer et al., 2002). The care recipient variables include the severity a nd duration of the dementia, behavior problems, functional status, cognitive status, and activities of daily living. The caregiver variables are the age, gender, and health of caregiver, the competing demands on th e caregivers time, relig ious beliefs, problemsolving ability, and the perception of disease. The environmental va riables in relation to caregiver burden include financial resources, social supports, and the quality of the prior relationship (Aminzadeh, Byszewski, Molnar, & Eisner, 2007; Burns & Rabins, 2000; Oyebode, 2003; Pinquart & Sorensen, 2003; Ry mer et al., 2002). First, th e care recipient variables (functional status, cognitive status and behavior problems) will be discussed in greater detail. The care recipients func tional status is the ability to perform activities of daily living, such as eating and bathing, as we ll as instrumental activities of daily living, such as housework and transportation (Katz, 1976). Declines in f unctional status can increase the number of care activities that the caregiver is required to perfor m. Caregivers who are confronted with multiple new, or rapidly increasing numbers of, demands to assist with a patients loss of function have less time to adjust their work, family, and soci al obligations and may experience more burden in response to providing care (Perren, Schmid, Herrmann, & Wettstein, 2007; Sherwood et al., 2005). Deficits in the care recipients functional status have also been consistently linked with caregiver burden (Clyburn et al., 2000; Given, Given, Stomme l, & Azzouz, 1999; Pinquart & Sorensen, 2003, 2006). The care recipients cognitive status which is defined as the care recipients presence or absence of neuropsychiatric symptoms has also been consistently linke d to caregiver burden 43

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(Aarsland, Larsen, Karlsen, Lim, & Tandberg, 1999; Matsuda, 1995; Nagatomo et al., 1999; Pinquart & Sorensen, 2006; Prescop, Dodge Morycz, Schulz, & Ganguli, 1999). The diminishing cognitive status on the part of the care recipient can be de fined as confusion or forgetfulness. This diminishing cognitive status can increase caregiver burden as caregivers find that they must supervise the care recipient more closely and have less time to fulfill other role obligations (Annerstedt, Elmstahl, Ingvad, & Sa muelsson, 2000; Gonzalez-Sa lvador et al., 1999; Papastavrou, Kalokerinou, Papacostas Tsangari, & Sourtzi, 2007). Behavior problems are another care recipien t variable that contributes to caregiver burden. Virtually all patients with dementia will develop changes in behavior and personality as the disease progresses (Holtzer et al., 2003; Ikeda, 2005). Th e nature and frequency of symptoms vary over the course of the illness, and psychotic feat ures tend to present later, particularly when the patient becomes more dependent. Psychotic manifestations and other behavior problems may be more troubling and cha llenging than cognitive losses; these features result in an increased burden for caregivers, earlier institutionaliza tion, and accel eration in cognitive decline (Gaugler, Kane, Kane, & Ne wcomer, 2006; Leroi, Voulgari, Breitner, & Lyketsos, 2003; Rozzini et al., 2006). Bedard and colleagues ( 2000) found that in 74% of the studies reviewed, behavior problem s of the care recipient showed the strongest re lationship with caregiver burden. Similarly, Sc hulz and colleagues (1995) reporte d that behavior problems are consistently related to caregiver distress. Behaviors that are most comm on or most serious to caregiv ers include behaviors related to restlessness and agitation, psychotic manifestations, day/night disturbances, delusions, wandering, and physical violence. In deed, it is thought that the unpred ictability of the course of behavioral problems may be why these behaviors cause high levels of stress among caregivers 44

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(Caron, Ducharme, & Griffith, 2006; Hooker et al., 2002; Rozzini et al., 2006). These psychotic features of dementia include hallucinations (usually visual), delusions, and delusional misidentifications. Delusions are very comm on in AD patients, and they contribute to the deterioration in the patients quality of life. Se veral studies have demonstr ated that about 50% of PWD have or have had delusions, particularly of the paranoid type that is evident in theft and betrayal (Chiu & Chung, 2006; Gill, 2006; Hart et al., 2003; Migliorelli et al., 1995). Delusions are associated with functional de cline and a more rapid downhill cour se, and they seem to play a critical role in patients institutionaliza tion (Chiu & Chung, 2006; Donaldson & Burns, 1999; Gill, 2006). The most potentially dangerous behavior among persons with dementia is the tendency to wander. Persons with dementia who wander pose a danger to themselves a nd are of considerable concern to their care providers and family members (Baker, Kokmen, Chandra, & Schoenberg, 1991; Hermans, Htay, & McShane, 2007; Logsdon et al., 1998). Wandering occurs in up to 65% of patients with dementia in nursing homes or dementia-based clinic samples (Logsdon et al., 1998) and in approximately 35% of community sa mples (Devanand et al., 1992). The fear that the person with dementia will wander away from home and become lost has led many caregivers to search for systems to enable them to mon itor the individual, including latches and alarms on doors, barring or disguising exits, and constant personal supervision. In addition, concern about wandering in other settings, such as in shopping centers or the community at large, may lead caregivers to restrict both their own activities and the activities of their care recipient (Hermans et al., 2007; Hindelang, 2006; Logsdon et al., 1998). Another aspect th at contributes to caregiver burden is the caregiver variables. 45

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As mentioned above, the caregiver variables that a ffect the level of burden are the age, gender, and health of caregiver, the compe ting demands on the caregivers time, religious beliefs, problem-solving ability, and the perception of disease. Because of the demographics of the aging population, as well as societal role expectations, fa mily caregivers overwhelmingly tend to be women and are most often spouses (Ga llicchio et al., 2002; Mausbach et al., 2007). In most studies, female caregivers report a higher le vel of burden than male caregivers (Gallicchio et al., 2002; Mausbach et al., 2007; Miller & Cafasso, 1992; Neal Ingersoll-Dayton, & Starrels, 1997). This finding has been interpreted in many ways, including the possibility that it represents womens greater comfort with expressi ng feelings, or that there are caregiving task differences between male and female caregivers or the possibility that female caregivers have greater stress from multiple social roles than male caregivers (Adams, 2007; Gallicchio et al., 2002; Miller & Cafasso, 1992; Neal et al., 1997). A substantial body of literature documents the negative psychological, physical, and social consequences associated with high leve ls of perceived burden. A high level of burden correlates with poor caregiver well-being and in creased use of health services. Informal caregivers are more likely to report that their health is in fair or poor condition than are noncaregivers (Baumgarten et al., 1992; Cl ark, Bond, & Hecker, 2007; Haley, 1997; Schulz & Beach, 1999; Schulz et al., 2001; Schulz, O'Brie n, Bookwala, & Fleissner, 1995). Lastly, environmental variables are another aspect that contributes to caregiver burden. Environmental variables that co ntribute to caregiver burden ar e financial resources, social supports, and the quality of the pr ior relationship. A significant component of caregiver burden is financial in origin. Caregivers may suffer an unavoidable depletion in personal savings and are often forced to give up or scale back thei r work which may produce feelings of resentment 46

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and isolation (Burns, 2000; Zhu et al., 2006). Some family caregivers who are employed report missing work, taking personal days, and quitting or retiring early to provide care (Lim & Zebrack, 2004). Also predictive of higher caregi ver burden is a poor relationship with the care recipient. The poor-quality relationship between the caregiver and care recipient predicts both caregiver depression and anxiety (Mahone y et al., 2005; Zhu et al., 2006). The degree of social support available to the caregiver is another environmental variable that has been investigated in the context of pr edicting caregiver outcomes. Social support has been a consistent mediator of stress-related outcomes in that the presence of a strong social network and satisfaction with support is a powerfu l predictor of positive outcomes. Caregivers reporting larger social networks and greater sa tisfaction with the suppor t they receive report significantly less burden, less depres sion, greater life satisfaction a nd fewer health problems than caregivers with fewer social tie s (Chang, Brecht, & Carter, 2001; Clyburn et al., 2000; Huang et al., 2006). The next variable th at will be discussed is the car egiver with disturbed sleep. Sleep and Nighttime Behavioral Di sturbances in the Care Recipient In persons with AD, sleep and nighttime behavioral disturbances such as wandering, day/night confusion, getting up rep eatedly during the night, and ni ghtmares or hallucinations are a significant source of caregiver burden and a primary cause of patient institutionalization (Pollak & Perlick, 1991). Gaugler and colleagues (2000 & 2003) f ound one primary stressor that reliably predicted institutionalizat ion, behavior problems. Thes e troublesome behavior problems include wandering, getting lost, becoming agita ted, exhibiting inappropriate behavior, and overnight problems. Findings also have suggested that the amount of family help provided to caregivers prior to placement is not as important as getting specific types of assistance (i.e., help with ADL dependencies and overnight problems) (Gaugler et al., 2000; Gaugler, Kane, Kane, Clay, & Newcomer, 2003). Another study had prim ary findings that two conditions are strongly 47

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associated with worse mental and physical health for the caregiver (a) the amount of increase in problematic behaviors among persons with dementia and (b) caregiving from someone who is in a long-term care setting (Hooker et al., 2002). The abnormal sleep pattern of the PWD has been particularly resistant to treatment. Sedative/hypnotic medications, light therapy, cognitive behavioral therapy, physical exercise, and sleep hygiene interventions, have been frequently prescribed to treat sleep problems in AD (McCurry et al., 2005; McCurry, Logsdon, Vitiello, & Teri 2004; Skjerve et al., 2004). Most research on the use of pharmaco logic and non-pharmacologic interventions to improve sleep has been focused on the AD patient (Prinz et al., 1982; Prin z, Vitiello, Raskind, & Thorpy, 1990; Tractenberg, Singer, & Kaye, 2005) There are reasons why sleep hygiene recommendations might not be effective with PW D. The components that have proven most effective, stimulus control and sleep restriction, require adherence to a st ructured routine that may not be feasible with PWD (Dowling & Wiener, 1997; McCurry, Gibbons, Logsdon, Vitiello, & Teri, 2003; Morin, Culbert, & Sc hwartz, 1994). Caregivers mi ght find that it is excessively burdensome to try to change established patient sleep habits. Finally, the neurobiolgocial and circadian timing changes associated with progr essive dementia might undermine behavioral attempts to regularize patient sleep routines (Dowling & Wiener, 1997; Hoekert, der Lek, Swaab, Kaufer, & Van Someren, 2006; McCurry et al., 2003; Morin et al., 1994 ; Van Someren, 2000). The next variable that will be discusse d is perceived stress in the caregiver. Perceived Stress in Caregiver Caring for disabled or chronically ill adu lts is stressful (Andren & Elmstahl, 2008; Fredman & Daly, 1997; Kiecolt-Gla ser et al., 1987); moreover, it is especially stressful for caregivers to persons with Alzheimers Diseas e or other dementias (Andren & Elmstahl, 2008; Schulz et al., 1995; Sugiura, Ito, & Mikami, 2007). Dementia caregivers in the National 48

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Caregiver Survey reported highe r levels of emotional strain than nondementia caregivers and were likely to report mental or physical problems as a result of caregiv ing (Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999). Othe r studies also reveal increase d stress in caregivers based on a diagnosis of mental impairment including de mentia (Bass, McClendon, Deimling, & Mukherjee, 1994; Leinonen, Korpisammal, Pu lkkinen, & Pukuri, 2001). Numerous studies have documented a direct association between care-related factors, such as intensity of the careg iver role (e.g., caregiving hours/da y, amount of help with ADL and IADL tasks) and care-recipient problems (e.g., behavioral problems, cognitive problems) with caregiving stress and burden (Andren & Elms tahl, 2008; Bertrand, Fredman, & Saczynski, 2006). Providing more care in general (Signe & Elmstahl, 2008; Yates, Tennstedt, & Chang, 1999) and spending more hours per day caregiving (Desbiens, Mueller-Rizner, Virnig, & Lynn, 2001; Signe & Elmstahl, 2008) were related to more burden in cross-sectiona l analyses (Yates et al., 1999) and higher rates of stre ss in prospective analyses (Co tter, 2007; Desbiens et al., 2001; Signe & Elmstahl, 2008). Likewise, caregivers expe rienced more stress and burden if they cared for someone with more behavioral problems (H ooker et al., 2002; Schul z et al., 1995) and who had a more rapid rate of cognitive declin e (Gallagher-Thompson, Brooks, Bliwise, Leader, & Yesavage, 1992). These associations were obs erved in prospective studies of caregivers to persons with dementia (Boutoleau-Bretonnie re, Vercelletto, Volteau, Renou, & Lamy, 2008; Gallagher-Thompson et al., 1992; Hooker et al., 2002; Montgomery, Mayo-Wilson, & Dennis, 2008), a group that is likely to spend more time pr oviding care, help with mo re activities of daily living (ADL) and instrumental ac tivities of daily living (IADL) tasks, and deal with more cognitive and behavioral problematic behavior problems than caregivers to persons without dementia. 49

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The high correlation between caregiving intens ity and care recipient cognitive status is underscored by a recent meta-analysis that inte grated 228 studies examining the effects of caregiving on burden, including stress (Pinqua rt & Sorensen, 2003). The result showed significant, positive correlations between caregiver burden and recipient cognitive impairment, hours of care provided per week, and number of caregiving tasks. Care recipient behavioral problems were more strongly relate d to caregiver burden than any of the other variables included in their analyses. Furthermore, the number of hours of caregiving and cognitive impairment were more consistently associated with burden among caregivers to adults with dementia than other caregivers. However, the number of caregiving tasks performed was more consistently related to burden in combined caregiver samples than in samples restricted to dementia caregivers alone (Bertrand et al ., 2006). As one can plainly see, caring for a disabled or chronically ill adult is stressful (Fredman & Da ly, 1997; Hooker et al., 2002; Kiecolt-Glaser et al., 1987; O'Rourke, Cappeliez, & Neufeld, 2007; Papastavrou et al., 2007); moreover, it is especially stressful for caregivers to persons with Alzheimers Disease or other dementias (Schulz & Martire, 2004; Schulz et al., 1995; Vickrey et al., 2006). The next concept that will be discussed is the primary appraisal. Primary Appraisal In primary appraisal, the person evaluates whether he or she has anything at stake in this encounter. For example, is there potential harm or benefit with respect to commitments, values, or goals? Is the health or well-be ing of a loved one at risk? Is th ere potential harm or benefit to self-esteem? (Lazarus & Folkman, 1984). Primar y appraisal is influenced by the persons beliefs, values, and commitments. There are three kinds of primary appraisa l, irrelevant, benignpositive, and stressful. When an encounter with the environment carries no implication for a persons well-being, it falls within the category of irrelevant (Lazarus & Folkman, 1984). The 50

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person has no investment in the possible outcome s, which is another way of saying that it impinges on no value, need, or commitment; nothing is to be lost or gained in the transaction. Benign-positive appraisals occur if the outcome of an encounter is construed as positive, that is, if it preserves or enhances well-being or promises to do so. These appraisals are characterized by pleasurable emotions such as joy, love, happiness, exhilaration, or peacefulness (Lazarus & Folkman, 1984). Totally benign-positive appraisals that are without some degree of apprehension may be rare, however. For some people there is always the prospect that the desirable state will sour, and for those who believe that one must ultimately pay for feeling good with some later harm, benign appraisals can ge nerate guilt or anxiet y. These illustrations anticipate the idea that appraisa ls can be complex and mixed, depending on person factors and the situational context (Lazarus & Folkman, 1984). Stress appraisals include harm/lo ss, threat, and challenge. In harm/loss, some damage to the person has already been sustained, as in incapacitati ng injury or illness, recognition of some damage to self-or social esteem, or loss of a loved or valued person. The more damaging life events are those in which central and extensive commitments are lost (Lazarus & Folkman, 1984). Threat concerns harm or losses that have not yet taken place but are anticipated. Even when a harm/loss has occurred, it is always fused w ith threat because every loss is also pregnant with negative implications for the future (Lazarus & Folkman, 1984). The primary adaptational significance of threat, as distingu ished from harm/loss, is that it permits anticipatory coping. To the extent that humans can antici pate the future, they can plan for it and work through some of the difficulties in advance, as in antic ipatory grief work (Lazarus & Folkman, 1984). 51

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The third type of stress apprai sal, challenge, has much in common with threat in that it too calls for the mobilization of coping effort s (Lazarus & Folkman, 1984). The main difference is that challenge appraisals focus on the potential for gain or growth inherent in an encounter and they are characterized by pleasurable emotions such as eagerness, excitement, and exhilaration, whereas threat centers on the potential harms and is characterized by negative emotions such as fear, anxiety, and anger (L azarus & Folkman, 1984). Threat and challenge are not necessarily mu tually exclusive. A spouse diagnosed with Alzheimers Disease is likely to be appraised as holding potential gains in knowledge and skills, responsibility, and dedication. At the same time, it entails the ri sk of the person being swamped by new demands and not performing as a spouse as well as expected. Therefore, caring for a spouse who has been diagnosed with AD is likel y to be appraised as both a challenge and a threat. Although threat and challenge appraisals are distinguished from one another by their cognitive component, the judgment of potential harm or loss versus mastery or gain, and their affective component, negative versus positive emo tions, they can occur simultaneously (Lazarus & Folkman, 1984). Lazarus and Folkman (1984) emphasize that thre at and challenge appraisals are not poles of a single continuum. Threat and challenge can occur simultaneously, and must be considered as separate, although often related, constructs. Moreover, the relationship between threat and challenge appraisals can shift as an encounter unf olds. A situation that is appraised as more threatening than challenging can come to be ap praised as more challenging that threatening because of cognitive coping efforts which enable the person to view the episode in a more positive light, or through changes in the envir onment that alter the troubled person-environment relationship for the better (Lazarus & Folkman, 1984). 52

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Challenge, as opposed to threat, has important implications for adaptation. For example, people who are disposed or encouraged by their ci rcumstances to feel challenged probably have advantages over easily threatened people in mora le, quality of functioning, and somatic health (Lazarus & Folkman, 1984). Challenged persons are more likely to have better morale, because to be challenged means feeling positive about demanding encounters, as reflected in the pleasurable emotions accompanying challenge. The quality of functioning is apt to be better in challenge because the person f eels more confident, less emo tionally overwhelmed, and more capable of drawing on available resources than the person who is inhibited or blocked. Finally, it is possible that the physiological stress response to challenge is di fferent from that in threat, so that diseases of adaptation are less like ly to occur (Lazarus & Folkman, 1984). Secondary Appraisal When we are in jeopardy, whether it be a th reat or a challenge, something must be done to manage the situation. In that case, a furt her form of appraisal b ecomes salient, that of evaluating what might and can be done, whic h is secondary appraisal (Lazarus & Folkman, 1984). Secondary appraisal activity is a crucial fe ature of every stressful encounter because the outcome depends on what, if anything, can be done, as well as on what is at stake. Secondary appraisal is more than a mere intellectual exercise in s potting all things that might be done. It is a complex evaluative proces s that takes into account which coping options are available, the likelihood that a given opti on will accomplish what it is supposed to, and the likelihood that one can apply a par ticular strategy or set of stra tegies effectively (Lazarus & Folkman, 1984). Bandura (1977, 1982) emphasizes the distinction between these two expectancies. He uses the term outcome expectancy to refer to the persons evaluation that a given behavior will lead to certain outcomes and efficacy expectation to refer to the persons conviction that he or she can successfully execute the behavior required to produce the 53

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outcomes. In addition, the appraisal of c oping options includes an evaluation of the consequences of using a particular strategy or set of strategies vis--vis other internal and/or external demands that might be occurring simultaneously (Lazarus & Folkman, 1984). Secondary appraisals of coping options and primary appraisals of what is at stake interact with each other in shaping the degree of stress and the strength and quality (or content) of the emotional reaction (Lazarus & Folkman, 1984). Th is interplay can be quite complex, although our understanding here is still rudi mentary. For example, other thi ngs being equal, if the person is helpless to deal with a demand such as cari ng for a spouse with AD, stress will be relatively great because the harm/loss cannot be overcome or pr evented. If the person has a high stake in the outcome, meaning that it touches a str ong commitment, helplessn ess is potentially devastating. Even when people belie ve they have considerable pow er to control the outcome of an encounter, if the stakes are high any doubt can produce considerable stress (Lazarus & Folkman, 1984). Challenge appraisals are more likely to occu r when the person has a sense of control over the troubled person-environment relationship (L azarus & Folkman, 1984). Challenge will not occur, however, if what must be done does not call for substantial efforts. The joy of challenge is that one pits oneself agains t the odds (Lazaru s & Folkman, 1984). We need to look closely at what it means to speak of a sense of control in a stressful encounter with respect to challenge (Lazarus & Folkman, 1984). There are numerous situations in where there seems to be little opportunity to enhance a value or commitment and/or which the person feels helpless. Yet people can appraise these situations as challenges because challenges can also be defined as controlling oneself in the face of adversity, and even transcending adversity. An example is a li fe-threatening, incapacitating illn ess such as AD in which the 54

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person reports being challenged by the task of ma intaining a positive outlook, or tolerating pain and distress without falling apart (Lazarus & Folkman, 1984). In order to understand how people can feel challenged even under the bleakes t conditions, control is de fined as control over oneself and ones emotions as well as cont rol over environmental conditions (Lazarus & Folkman, 1984). Next, emotion-focused copi ng will be discussed in further detail. Coping is defined as the persons constantly changing cognitive behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the persons resources. Coping has two widely re cognized major functions : regulating stressful emotions (emotion-focused coping) and alte ring the troubled person-environment relation causing the distress (problem-focused coping) (Lazarus & Folkman, 1984). Emotion-Focused Coping A wide range of emotion-focused forms of c oping is found in the literature. One large group consists of cognitive processes directed at lessening emotional distress and includes strategies such as avoidance, minimization, distancing, selective attention, positive comparisons, and uncovering positive value from negative events (Lazarus & Folkman, 1984). Many of these strategies derive from theory and research on de fensive processes and are used in virtually every type of stressful encounter. A smaller group of cognitive strategies is directed at increasing emotional distress (Lazarus & Folkman, 1984). Some individuals need to f eel worse before they can be better; in order to get relief they first need to experience their dist ress acutely and to this end engage in self-blame or some other form of self-punishment. In still other instances, individuals deliberately increase their emotional distress in order to mobilize themselves for action, as when athletes psych themselves up for a competition (Lazarus & Folkman, 1984). Certain cognitive forms of emotion-focused coping lead to a change in the way an encounter is construed without changing the objective situation (Lazarus & Folkman, 1984). 55

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Consider the following cognitive maneuvers that ar e commonly used to reduce threat: I decided there are more important things to worry about; I considered how much worse things could be; and I decided I didnt need him nearly as much as I thought. In each case, threat is diminished by changing the meaning of the situation (Lazarus & Folkman, 1984). Other emotion-focused coping strategies do not change the meaning of an event directly. For example, whether selective attention or avoidance changes meaning depends on what is attended to, or what is being avoided. The meani ng of an encounter can remain the same even if some of its aspects are screened out, or thoughts about the encounter are put aside temporarily. Although emotion-focused processes may change the meaning of a stressful transaction without distorting reality, we must still consider the issue of self-deception, which is always a potential feature of this type of coping pro cess (Lazarus & Folkman, 1984). We use emotionfocused coping to maintain hope and optimism, to deny both fact and implication, to refuse to acknowledge the worst, to act as if what happe ned did not matter, and so on. These processes lend themselves to an interpretation of self-d eception or reality distor tion (Lazarus & Folkman, 1984). We are inclined to argue that self-decep tion extends on a continuum from personal or social illusions to major distortions, with a sharp dividing line between so-called healthy and pathological forms. We must be aware of th e contexts in which self-deception occurs, and the short and long term costs and benefits that accrue from it (Lazarus & Folkman, 1984). In this study, the emotion-focused variable is the caregiver who is worried about an unsafe situation when PWD is up during night wit hout supervision. In order to understand this variable, one must first be aware of the sleep patterns of the AD care recipient. Alzheimers disease and sleep The cause of sleep disturbance in AD is thought to be multifactorial. Pathophysiological changes resulting from the disease itself interfere with the maintenance of normal sleep (Bliwise, 56

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2004; Craig, Hart, & Passmore, 2006). Damage to neuronal pathways, such as the cholinergic pathways, that initiate an d maintain sleep is thought to contri bute to sleep changes in AD (Craig et al., 2006; Vitiello & Borson, 2001) The circadian pacemaker, in the suprachiasmatic nucleus, is also important in maintaining a normal sleep -wake-cycle. Researchers have demonstrated dysregulation of the circadian timing system in AD and this may play a role in the development of sleep disturbance (Craig et al., 2006; Mishima, Okawa, Ho zumi, & Hishikawa, 2000). Sleep disturbance is also known to occur as part of asso ciated medical and psychiatric illnesses, such as sleep-disordered breathing (SDB), or sleep apnea, disrupted chr onobiology (most often characterized by excessive daytime napping), disori entation, medication use, depression, bedrest, nocturia, arthritis, depression, and circadian r hythm changes (Ancoli-Is rael, Klauber, Gillin, Campbell, & Hofstetter, 1994; Bliwise, 2004; Craig et al., 2006). Increased duration and frequency of awakeni ngs, decreased slow-wave sleep and rapid eye movement (REM) sleep, and daytime napping mark the sleep of AD patients (Park et al., 2006; Prinz et al., 1982; Vitiello, Prinz, Williams, Frommlet, & Ries, 1990). The sleep patterns observed in AD patients are consistent with ch anges found in the sleep of non-demented older adults, although they occur more frequently and tend to be more severe in AD patients than in the general population (McCurry, Reynolds, Ancoli-Is rael, Teri, & Vitiell o, 2000). The loss or damage to neuronal pathways that initiate and maintain sleep in AD patients is most likely the cause of this exacerbation of age-related sleep ch anges. Brainstem regions and pathways that regulate sleep-wake cycles undergo degenerative ch ange in AD, as do the corticol tissues that generate EEG slow-wave activity during sleep (Bliwise, 1993; Mo e, Vitiello, Larsen, & Prinz, 1995; Park et al., 2006). 57

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Patients with dementias, such as AD, often have nocturnally disr upted sleep (Bliwise, 2004; McCurry et al., 2007). Clin ically, this may present as agitation during the nighttime hours, which may affect as many as a quarter of AD patie nts during some stage of their illness (Bliwise, 2004; McCurry et al., 2007). For patients with dementia, sleep disturbance will also reduce the quality of life (Cole & Richards, 2006). It may al so contribute to the behavioral, functional, and cognitive status of persons with AD, as well as to the burden and health status of the caregiver (Pollak & Perlick, 1991; Pollak & Stokes, 1997). For family caregivers, being awakened at night by patient behaviors such as wandering, getting out of bed repeatedly, and talking in bed is one of the most disturbing aspects of care (McCurry et al., 1999; McCurry et al., 2007) and is a major cause of patient institutionaliz ation (Buhr et al., 2006; Hope et al., 1998; Pollak & Perlick, 1991; Spitznagel, Tremont, Davis, & Foster, 2006). For these reasons, sleep disturbance has recently been of particular interest in the AD population. First, AD and circadian rhythm changes will be discussed in greater detail. Alzheimers disease and circadian rhythm changes As stated above, sleep regulation is generally considered to be an interaction of two distinct processes that can be expressed as di screte mathematical functions (Borbely, 1982). One, a circadian oscillatory process, promotes wakefulness as a function of time-of-day. Opposing this alerting circadian r hythm is a homeostatic process th at builds the need to sleep as a function of the duration of previous wakefulne ss (Jewett & Kronauer, 1 999). Sleep disturbance in patients with AD is characterized by increase s seen in both the frequency and duration of nocturnal awakenings and daytime naps, suggesting that disturbance of the circadian system may be involved in the etio logy of these symptoms (McCurry et al., 1999; McCurry et al., 2007; Vitiello, Bliwise, & Prinz, 1992). 58

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Changes in the hypothalamic suprachiasmatic nucleus and other parts of the circadiantiming system that determine tendency towards sleep and wakefulness have also been implicated in the sleep disturbances of both normal elderly and dementia patients (P ark et al., 2006; Swaab, Fliers, & Partiman, 1985; Van Someren, 2000; Vi tiello & Borson, 2001). Shifts in the basic circadian sleep-wake rhythm of dementia patient s can be severe, and in extreme cases may lead to complete day/night sleep pattern reversals. It has been estimated that in the later stages of disease, AD patients spend approximately 40% of their time in bed awake, and a significant portion of their daytime hours asleep (Ancoli-Isr ael, Parker, Sinaee, Fell, & Kripke, 1989; Park et al., 2006; Vitiello & Borson, 2001; Vitiello, Poceta, & Prinz, 1991). This increased daytime sleep consists almost exclusively of stage 1 a nd 2 sleep, and poorly compensates for night-time losses of slow-wave sleep and REM sleep (P ark et al., 2006; Vitiello et al., 1991). The tendency for agitation to o ccur at night suggests that some changes in sleep and wakefulness in the AD patient reflect alterations in the bodys ability to regulate the timing of certain physiological events, i.e, the changes represent an al tered circadian timing system (Bliwise, 2004; Park et al., 2006). Numerous st udies have described chronobiologic changes in sleep/wakefulness and other physiological marker s of circadian rhythm icity such as body temperature, melatonin, blood pre ssure, and heart rate occurri ng over the 24-hour day (Bliwise, 2004; Park et al., 2006). Harper and colleagues (2005) found that both ag e-related and diseasespecific changes play a role in driving the cir cadian rhythms observed in AD patients. Studies have also shown for typical nursing home patients that no no cturnal hour is represented by continuous sleep, and that no daytime hour is comp letely devoid of brief naps or unintended sleep episodes (Pat-Horenczyk, Kl auber, Shochat, & Ancoli-Israel 1998). Another explanation of the AD recipients impaired sleep is environmental influences. 59

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Environmental influences such as light levels and social/institutional factors also affect the extent to which dementia patients sleep during th e daytime. Light level is an important factor in synchronizing the circadian timing system; regardless of the setting, AD patients often receive minimal exposure to light (Bliwise, 2004; Dowling, Mastick, Hubbard, Luxenberg, & Burr, 2005). In addition, an often overlooked component of AD is macular and optic nerve degeneration which may limit the extent to which external light can favo rably impact circadian rhythms (Hinton, Sadun, Blanks, & Miller, 1986). Next, the caregiver who worries about sleeping through nighttime activity will be discussed in further detail. Caregiver worrying about sleeping through nighttime activity Due to these troublesome behaviors (wa ndering, day/night co nfusion, getting up repeatedly during the night, and nightmares or hall ucinations) displayed by the care recipient, the caregiver cannot count on the f act that the care recipient will sleep throughout the night. The caregiver may worry at night about sleeping through the care recipient wandering through the home. While wandering through th e home, the care recipient coul d exit, fall, swallow something harmful, burn or cut himself. Of these troublesome behaviors, wandering will be discussed first. Wandering is a common behavior disturbance during AD and one of the most exhausting for the caregiver (Creese, Beda rd, Brazil, & Chambers, 2008; Ro lland et al., 2003; Scarmeas et al., 2007). Because of this behavior, caregivers ma y worry at night that the care recipient may exit the home and begin to wander. People with AD can wander away from their home and the prevalence of such wandering incidents is exp ected to grow as aging populations increase (Rowe, 2003; Rowe & Bennett, 2003; Rowe & Glover, 2001). About 12% of AD subjects living at home (Logsdon et al., 1998; Rolland et al., 2003) to 39% of those living in nursing homes present this aberrant motor behavior (CohenMansfield, Werner, Mar x, & Freedman, 1991). 60

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Wandering causes worry and stress fo r the caregiver. The next troub lesome behavior that will be discussed is falls. Falls are among the most serious and common problems faced by the elderly persons and can be life changing events. Compared to cognit ively intact elderly, indi viduals with dementia are at an even higher risk of increased morbidity and mortality due to fa lls (Fick, Kolanowski, & Waller, 2007; Gales & Menard, 1995; Tinet ti, Inouye, Gill, & Doucette, 1995; Waldorff & Andersen, 2007). This increased risk is present for individuals in both community (Fick et al., 2007; Melton, Beard, Kokmen, Atkinson, & O'Fallon, 1994; Morris, Rubi n, Morris, & Mandel, 1987; Oleske, Wilson, Bernard, Evans, & Terman, 1995; Waldorff & Andersen, 2007) and institutional (Holmes et al., 2007; Luukinen, Koski, Laippala, & Kivela, 1995; Rubenstein, Robbins, Josephson, Schulman, & Osterweil, 19 90; Waldorff & Andersen, 2007) settings. A number of researchers have confirmed this increased risk of falls and fractures in individuals with dementia. Me lton and colleagues (1994) found that the risk of an individual sustaining a fracture increased tw ofold during the year in which he or she was diagnosed with AD as compared to the year before diagnosis. The largest increase was in hip fractures, which may indicate an increased incidence of certain ty pes of falls (Oleske et al., 1995). Rowe and Fehrenback (2004) also found that the falls are a major cause of nighttime injuries. Sattin and colleagues (1990) found that 50% of the elderly requiring hospitalizations subsequent to a fall were discharged to a nur sing home; Alexander and colleagues (1992) found a rate of 42% and Rowe and Fehrenbach (2004) found a rate of 65%. The rate was even higher (76%) for those subjects who had sustained a hip fracture and were discharged from the hospital (Rowe & Fehrenbach, 2004). These alarming sta tistics indicate that the risk of loss of community tenure after injury is greater for pe rsons with dementia. Rowe and Fehrenbach 61

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(2004) also found that falls are a major cause of nighttime injuries. Hea lth care professionals should assist caregivers in provi ding a safer environment for PWD at night and researchers need to work to identify strategies to assist careg ivers in improving the safety of the nighttime environment. Next, problem-focused copi ng will be discussed in further detail. Problem-Focused Coping Problem-focused coping refers to efforts direct ed at solving or managing the problem that is causing distress. Problem-focused efforts are often directed at defining the problem, generating alternative solu tions, weighting the alternative in terms of their costs and benefits, choosing among them, and acting (Lazarus & Folk man, 1984). It includes strategies for gathering information, making decisions, planning, and resolving conflicts; it includes efforts directed at acquiring resources (e.g., skills, tools, and knowledge) to help deal with the underlying problem. It also incl udes instrumental, situation speci fic, and task-oriented actions (Lazarus & Folkman, 1984). Caregiver and sleep One health area that has received little empi rical study in caregiving research is sleep. Sleep is an important domain that is likely to be affected adversely by the task of providing care to a family member with cognitive impairments. Getting a good nights sleep is a high priority for most people. However, for those with AD and their caregivers, an uninterrupted nights sleep can be an unusual luxury. Problems sleeping at night can be very draining for the family members caring for AD patients living at home. Sleep is the natural periodic suspension of consciousness during which the powers of the body are restored (Oxford, 1999). Sleep is an activ e multiphase process. Normal sleep has two phases that can be documented by electroence phalogram (EEG): REM sleep and non-REM, or slow wave, sleep (Huether & McCance, 2000). Non-REM sleep is initiated when 62

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neurotransmitters withdraw from the reticular formation and arousal mechanisms are blocked. REM is characterized by desynchronized fast ac tivity that occurs about every 90 minutes beginning 1 to 2 hours after non-REM sleep begins. This sleep pattern is known as paradoxical sleep because the EEG pattern is similar to th e normal wake pattern (Huether & McCance, 2000). REM and non-REM sleep alternate throughout the night, with lengthening intervals of REM sleep and fewer intervals of deeper states of non-REM sleep toward morning (Huether & McCance, 2000). Fragmented sleep is defined as periods of wakefulness throughout the sleep period and the lack of deep-stage sleep (Oxford, 1999). In this study, fragmented sleep of the caregiver will be further investigated. As mentioned above, getting a good nights sleep is a high priority for caregivers of PWD. Disturbed sleep is one of the most common reasons why caregivers are no longer able to care for a patient, resulting in inst itutionalization (Pollak & Perlick, 1991). It is important to study fragmented sleep of the careg iver because of the physiologic and psychologic consequences (Prinz et al., 1982; Prinz et al., 1990; Tractenberg et al., 2005). Several factors could lead to impaired sleep among caregivers. First, it is well established that individuals with dementia co mmonly experience sleep disruptions, and these disruptions are viewed as problematic by caregivers (Kochar, Fredman, Stone, & Cauley, 2007; McCurry et al., 1999; Pinquart & Sorense n, 2003; Rabins et al., 1982). Caregivers can be wakened at night by the AD car e recipient who may get out of bed repeatedly, wander around, and talk while in bed. These sleep disruptions from the care recipient can cause negative consequences for their own sleep (Creese et al., 2008). A study conducted by McKibbin and colleagues (2005) found that caregivers of patients with moderate to severe AD 63

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reported significantly more sleep problems and more functional impairment as a result of sleepiness than noncaregivers. Second, symptoms of stress and depression, commonly experienced by caregivers, are associated with impaired sleep (Buysse et al ., 1989; Creese et al., 2008; Donaldson, Tarrier, & Burns, 1998; Gallant & Connell, 1997; McCurry et al., 1999; McCurry et al., 2000; Pinquart & Sorensen, 2003). It is important for caregivers of PWD to get enough sleep. If they are sleep deprived, they will not have the patience and energy needed to take care of the person with AD. For caregivers, disturbances in the patients sleep and night-time behavior, particularly reduced night-time sleep, increased night-time wakefuln ess and wandering requiring caregiver attention, are a significant source of physical and psychological burden and are often cited as a reason for a familys decision to institutiona lize a patient with dementia (Buhr et al., 2006; Donaldson et al., 1998; Gaugler et al., 2000; Hope et al., 1998; Pollak & Perlick, 1991) Wilcox and King (1999) found that caregivers experiencing more psychological distress reported more overall sleep problems and greate r impairments in sleep quality and daytime dysfunction. These results were consistent w ith results from community samples and with a report focused specifically on caregivers (Creese et al., 2008; Foley et al., 1995; Newman, 1997; Teri, McCurry, Edland, Kukull, & Larson, 1995). Finally, these two factors coul d interact to form a self-perpetuating cycle of sleep disturbance. That is, caregive rs might be awakened regularly by their care recipients. Once awake, caregivers would experien ce negative thoughts and feelings that would interfere with resuming sleep. Over time, the sleep depriv ation can cause daytim e fatigue, stress, and depression that can further interfere with sl eep, thus exacerbating th e problem (Pinquart & Sorensen, 2003, 2006; Thommessen et al., 2002). 64

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Disturbed sleep is one of the most common r easons why caregivers are no longer able to care for a patient, resulting in institutionalization (Pollak & Perl ick, 1991). Pollack and Perlick (1991) examined the role of sleep problems in decisions of families to institutionalize elderly relatives. Seventy-three primary caregivers of elders recently admitted to a nursing home or psychiatric hospital were asked to identify the problems the el der was having during the night and day. Seventy percent of the caregivers in each sample cited nocturnal problems in their decision to institutionalize, often because their own sleep was disrupted (Pollak & Perlick, 1991). These symptoms of sleep depriv ation, including fatigue, stress, and depression, not only affects the quality of life and health of the caregiver, but could also affect the quality of care provided to the care recipient. Consequences of fragmented sleep Cardiovascular risk is greater in individuals who perceive th eir sleep as poor (Anselm et al., 2008; Schwartz et al., 1999). Ayas and co lleagues (2003) found in a prospective study of women a significant positive association between reported sleep durati on and incidence of coronary heart disease. Short a nd long sleep durations were associat ed with an increased risk of incident coronary heart disease. After cont rolling for smoking status, body mass index (BMI), and other relevant covariates, a significant po sitive association between sleep duration and coronary heart disease persisted (Ayas et al., 2003). Previous studies have also demonstrated an increased risk of coronary artery disease morbidity and death in subjects w ith sleep complaints. Kirpke and colleagues (1979) studied the mortality rate of a large cohort of American Cancer Society volunteers who had completed a survey that contained a question about sleep duration. Although they were not able to control for various relevant confounders, they demonstrated that reported sl eep duration of fewer than 4 65

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hours per night was associated with an increase d 6-year all-cause mort ality rate in men and women. In addition in males, reports of bad sleep quality increased the risk of death or hospitalization because of isch emic heart disease (Koskenvuo, Kaprio, Lonnqvist, & Sarna, 1986) and problems falling asleep increased the risk of myocardial infarction and cardiac death (Appels et al., 1987; Aronow, 2007). Si egrist (1987) also found that a higher risk of developing a myocardial infarction was found in males with severe sleep distur bances. Next, the effects of sleep changes on ones physical health will be discussed. Effects of Sleep Changes on Physical Health In concert with sleep disturba nces, there has been an incr ease in the prevalence of both obesity and severe obesity. A comparison of studies conducted from 1988 to 1994 and from 1999 to 2000 determined that the prevalence of obe sity has increased from 23% to 31% and the prevalence of severe obesity from 3% to 5% be tween the 2 periods (Flegal et al., 2002). In recent years, an increasing number of epidemio logical studies have reported an association between sleep duration and BMI. A 2000 repor t from Spain observed that those reporting sleeping 6 hours (h) or less per day had an increase d risk of obesity after controlling for sex, age, and other factors, and this group also had a higher mean BMI (Vioque et al., 2000). The Wisconsin Sleep Cohort Study, which was a popul ation based study that included over 1,000 subjects, found that a sleep duration of 7.7 h predicted the lo west mean BMI (Taheri, Lin, Austin, Young, & Mignot, 2004). Two recent studies from Japan have explored the relationship between insufficient sleep and obesity. In 8,274 children aged from 6 to 7 years, Sekine and colleagues (2002) found an inverse relationship between hour s of sleep and risk of ch ildhood obesity. Shigeta and colleagues (2001) noted in a study of 321 men a nd 132 women that sleeping less than 6 hours per 66

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night and remaining awake beyond midnight increas ed the likelihood of obe sity. Recent findings suggest that endocrine changes ma y mediate this relationship (Lusar di et al., 1999; Spiegel et al., 2000; Spiegel, Leproult, & Van Cauter, 1999). Sleep and diabetes will now be further examined. Intriguingly, the dramatic increase in the inci dence of obesity and diabetes seems to have developed over the same period of time as the progressive decrease in self-reported sleep duration (Flegal et al., 1998; Flegal et al., 2002; Laposky, Bass, Kohsaka, & Turek, 2008; Van Cauter, 2005). The two secular trends mirror each other over the second half of the 20th century. Taken together, sleep loss affects millions of in dividuals in our modern society, and recent studies have provided evidence in support of its deleterious impact on glucose metabolism and appetite regulation (Laposky et al ., 2008; Spiegel et al., 2005). A recent study demonstrated that sleep de privation can adversely affect endocrine function. Spiegel and colleagues (1999) limited 11 young men to 4 h of sleep per night for 6 nights followed by 6 days of recove ry sleep (10 h per night). Desp ite the short duration of partial sleep deprivation, the subjects demonstrated impa ired glucose tolerance during sleep deprivation compared with their recovery period. Ayas and peers (2003) al so found that short self-reported sleep duration is associated with an increased risk of being diagnosed with diabetes. This association persists even after adjustment for age, smoking, hyperten sion and other risk factors. Sleep restriction was a significant predictor of symptomatic diabetes even after controlling for body mass index (Ayas et al., 2003 ; Laposky et al., 2008). Next, the caregivers physiological well-being will be discussed in greater detail. Caregivers Physiological Well-Being Stress is defined as any stimulus that distur bs or interferes with the normal physiological equilibrium of an organism (Oxford, 1999). Stre ss is a state of threatened homeostasis provoked by a psychological, environmental, or physiologic stressor (Chrousos & Gold, 1992; Peterson et 67

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al., 1991). One can also define stress as a stimulus, either internal or exte rnal, that activates the hypothalamic-pituitary-adrenal axis (HPA) and the sympathetic ner vous system (SNS), resulting in a physiological change or adaptation so that the organism can deal wi th the threat (Maier, Goehler, Fleshner, & Watkins, 1998). In addition to these aspects, stress is now construed more broadly to include personality and socioenvironmental factors th at are pertinent to individual adaptation (Francis, Champagne, Liu, & M eaney, 1999; Manuck, Marsland, Kaplan, & Williams, 1995). In stress, a demand exceeds a persons coping abilities, resulting in reactions such as disturbances of cognition, emotion, and behavior that can adversely affect well-being (Huether & McCance, 2000). There are two well recognized st ress response systems that are activated when a stimulus is perceived as a stressor (King & Hegadoren, 2002). These are the sympathetic or autonomic response system and the HPA axis (King & Hegadoren, 2002). The activation of the sympathetic system occu rs within seconds with resultant increases in the secretion of epinephrine from the adrena l medulla and norepinephrine from peripheral and central sympathetic neurons (King & Hegadoren, 2002). This reaction is referred to as fight or flight response. The fight or flight respons e is a short intense stress reaction that is an emergency reaction for survival (Huether & McCance, 2000). The activation of the HPA axis occurs more slowly within minutes or hours with increases occurring in release of corticot rophin-releasing hormone (CRH) from the hypothalamus. CRH stimulates the pituitary to release adrenocorticotropin-releasing hormone (ACTH) into the systemic circulation, which in tu rn stimulates the adrenal cortex to release the glucocorticoid, cortisol (King & Hegadoren, 2002). The HPA system plays an important role in physiological and psychological c oping with a stressor and in mode rating the effects of stress on 68

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health, mood, behavior and the development of stress related diseases (Black, 2006; Breier, 1989; Meaney, Aitken, van Berkel, Bhatnagar, & Sapolsky, 1988). Stress can be divided into two subtypes: acute and chronic. Acute stress prepares us for fight or flight and is generally short-term. Ch ronic stress lasts longer an d is the main cause of stress-related health problems (Black, 2006). Chronic stress occurs when continuous acute stress responses keep the body on alert continuously, ne gatively affecting health (Black, 2006). Chronic or extreme activation can lead to changes in HPA axis activity, as evidenced by abnormal cortisol levels, which may in turn incr ease vulnerability to de veloping health problems (King & Hegadoren, 2002). Ideally, the exposure to the stressor is eliminated and the endocrine and immune systems quickly restore hormonal ba lance (Black, 2006). The normalization of the acute cortisol response af ter the termination of a stressful event protect s against the potentially detrimental effects of glucocorticoids or hi ppocampus neurons, immune function, and mental health (King & Hegadoren, 2002) (Black, 2006). Stress can serve as a catalyst for physical changes, either strengthening the bodys resilience or weakening its resi stance to illness. Paradoxically the added stress created when one is afflicted with disease perpetuates the illness, furthe r weakening the immune system (Black, 2006). Uncontrollable, unpredictable, an d constant stress has far-reaching consequences on our physical and mental health (Black, 2006). Many illnesses such as obesity, cardiovascular disease, and diabetes mellitus type II are influe nced by chronic or overwhelming stress (Black, 2006). Salivary cortisol will now be discussed in greater detail. Salivary Cortisol and Physiologic Changes Cortisol is the most potent glucocorticoid produced by the human adrenal. It is the primary hormonal product of the HPA axis and plays a critical role in the metabolism of proteins, gluconeogenesis, and lipid metabolism (Ice, Katz-Stein, Himes, & Kane, 2004). In 69

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addition, it supports vascular responsiveness, skeletal turnover, mu scle function, immune response, and renal function (Ber ne & Levy, 1997). It is synthe sized from cholesterol and its production is stimulated by pituit ary adrenocorticotropic hormone (A CTH) which is regulated by corticotrophin releasi ng factor (CRF) (Berne & Levy, 1997). ACTH and CRF secretions are inhibited by high cortisol levels in a negative feedback loop. In plas ma a majority of cortisol is bound with high affinity to corticosteroid bindi ng globulin (CBG or transcotin)(Berne & Levy, 1997). Cortisol has a well-documented circadian pa ttern, which is established as early as 3 months of age (Price, Close, & Fielding, 1983). Cortisol levels are lowest between 20:00 and 02:00h; levels increase thereafter, with the highest levels shortly after awakening (Pruessner et al., 1997; Weitzman et al., 1971). In the absence of external stimuli, cort isol levels typically decrease throughout the day. Cortisol is secreted in intermittent pulses at 1-2 h intervals; the observed circadian pattern is pr oduced by the height of successive pulses (Ice et al., 2004). The HPA and cortisol have been extensively st udied in relation to psychosocial stressors. Cortisol increases in response to laboratory stressors (Bohne n, Houx, Nicolson, & Jolles, 1990; Kirschbaum & Hellhammer, 1994; Kirschbaum et al., 1995), stressful jobs (Benjamins, Asscheman, & Schuurs, 1992; Hennig, Laschefski, & Opper, 1994) and daily hassles (Smyth et al., 1998). Although cortisol allows an individual to respond to environmental stressors by supporting energy mobilization and me ntal alertness, chronic elevation of cortisol has been implicated in the pathogenesis of several psychiatric and somatic disord ers including, depression (Michopoulos et al., 2008; Steckler, Holsboer, & Reul, 1999), immunosuppression (Difrancesco et al., 2007; McEwen et al., 1997), obesity (Bjorntorp & Rosmond, 2000; Vgontzas et al., 2007), cardiovascular disease (Rosmond & Bjorntorp, 2000; von Kanel et al., 2008), diabetes (Cunha et 70

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al., 2008; Rosmond & Bjorntorp, 2000), and osteoporosis (Chehab, Ouertani, Chaieb, Haouala, & Mahdouani, 2007; Manelli & Giustina, 2000). Although cortisol activation in response to st ress is protective in s hort term chronic or extreme activation may have long-term negativ e consequences (Ganzel et al., 2007; Heim, Ehlert, & Hellhammer, 2000; Marti, Garcia, Va lles, Harbuz, & Armario, 2001). Chronic or extreme activation can lead to changes in HPA axis activity, as evidenced by abnormal cortisol levels, which may in turn increase vulnerability to developing health problems. The normalization of the acute cortis ol response after the terminati on of a stressful event protects against the potentially detrimental effects of glucocorticoids on hippo campus neurons, immune function, and health (King & He gadoren, 2002). Cortisol stimu lates the immune system and counteracts inflammatory and alle rgic reactions at normal levels but can suppress the immune system at excessive levels (King & Hegadoren, 2002). As with other circadian rhythms, cortisol appears to be influenced by sleep (Born & Fehm, 1998; Vgontzas et al., 2007) and light conditi ons (Levine, Milliron, & Duffy, 1994) and is ultimately controlled by the suprachiasmatic nuc leus of the hypothalamus (Ice et al., 2004). Although this diurnal pattern has been considered robust, alterations have been observed in disease states such as rheumatoid arthritis (D ekkers, Geenen, Godaert, van Doornen, & Bijlsma, 2000; Motivala, Khanna, Fitzgerald, & Irwin, 20 08), colic (White, Gunnar, Larson, Donzella, & Barr, 2000), among institutionali zed children (Carlson & Earls, 1997; Motivala et al., 2008), populations living in circumpolar environments (Levine et al., 1994), and shift workers (Goh, Tong, Lim, Low, & Lee, 2000; Zefferino et al., 2006) Thus, it has been suggested that diurnal cycle variation may provide valuable informati on on physiological and environmental influences on the HPA axis (Stone et al., 2001). 71

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A number of studies have investigated the effects of chronic stress on HPA activity in caregivers of PWD. Among these studies, the researcher s found elevated daytime cortisol levels in caregivers as compared with healthy comparis on subjects (Bauer et al., 2000; Cacioppo et al., 2000; Da Roza Davis & Cowen, 2001; de Vugt et al., 2005; Hugo et al., 2008; Neri et al., 2007; Vedhara et al., 1999). De Vugt and colleagues (2005) supported the hypothesis that salivary cortisol patterns change in rela tion to the stress of caregiving. Caregivers showed significantly higher levels of cortisol at the time of morning awakening th an comparison subjects, with smaller increases after awakening. In the care giver group, a higher cortis ol awakening response was found in caregivers of PWD wi th high levels of behavioral and psychological symptoms of dementia (de Vugt et al., 2005). These findings provide evidence for phy siological changes as indicators of chronic stress in caregivers. Gallagher-Thompson and colleagues also found hi gher morning cortisol in both Hispanic and non-Hispanic caregivers rela tive to noncaregivers of both ethni cities. In addition, they found that the distressed sample of caregivers, and th e finding of greater cortis ol levels throughout the day in caregivers of both ethnici ties relative to noncaregiver s, lends further support to the relationship between chronic st ress and HPA axis dysregulation (Gallagher-Thompson, Shurgot et al., 2006). It was reinfo rced by the fact that the 9 PM levels were still si gnificantly different between caregivers and noncaregivers despite the fact that this time of day has been characterized as the quiescent period of cor tisol secretion when secretory bursts are less probable and when transient everyday stress is likely to be minimal (Clow, Thorn, Evans, & Hucklebridge, 2004). Bauer and colleagues (2000) revealed evid ence of both increased HPA activity and impaired immunity in elderly spousal caregivers of PWD. This finding was consistent with their 72

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previous research (Dura, Ha ywood-Niler, & Kiecolt-Glaser, 1990), which observed elevated levels of stress, anxiety, and depression. This increased distress was also associated with elevated salivary cortisol levels, indicating HP A axis activation. Vedhara and colleagues (1999) also found increased levels of distress in careg ivers of PWD compared with controls. This increased distress was also associated with sign ificantly raised concentrations of cortisol. Furthermore, the chronic activation of the HPA ax is was associated with significantly impaired antibody responses to influen za vaccination (Vedhara et al ., 1999). Lastly, salivary immunoglobulin A (IgA) will be discussed in further detail. Salivary Cortisol and Older Adults Links between cumulative exposure to stress and aging have now been well established in rodents and primates, from the perspective of stress as both an accelerator of aging changes and aging as a contributor to the impairments in stress responsivity (Meaney, O'Donnell, & Rowe, 1996; Sapolsky, Krey, & McEwen, 1986). Age-altered stress responses are often accompanied by longer-lasting increases in circulat ing glucocorticoid levels (Lawlor et al., 1992; Sapolsky et al., 1986; Sapolsky, Zola-Morgan, & Squire, 1991). Hypercortisolemia with increasing age has also been demonstrated in bo th rodents and primates (Sapolsky et al., 1986; Sapolsky et al., 1991), particularly as regards a decr eased ability of the HPA axis to recover from a challenge with age (slower termination of the st ress response). This decreased ability of the HPA axis to return to baseline is thought to be due to an age-related decreased in glucocorticoid receptor (GR) sensitivity at the hippocampus, hypothalamus, and other brain sites (McEwen, Brinton, & Sapolsky, 1988). In contrast to these studies of stress, studies of basal daytim e cortisol levels and age in humans are inconclusive (Sherman, Wysham & Pfohl, 1985; Waltman, Blackman, Chrousos, Riemann, & Harman, 1991). However, basal nighttim e cortisol appears to be age influenced. 73

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The level at the nadir increases progressively wi th age, whereas the amplitude of the rhythm decreases with age for both men and women (C opinschi & Van Cauter, 1995; Lupien et al., 1996). Taken together, these studies reveal age incr eases in total plasma cortisol at times when cortisol would normally be restored to lower baseline levels in young subjects (following resolution of a stressor and at the circadian nadir). These age changes are in a direction that is predicted by the theori es of increased glucocorticoid rece ptor insensitivity with aging. Another study explored the ques tion of greater female HPA axis reactivity at older ages. This study examined the distributions of ACTH and cortisol responses which indicated that women tended to exhibit greater responses in te rms of total area under the curve as well as their maximal increases for ACTH and cortisol, with a larger propor tion of women showing responses above the respective sample medians for ACTH and cortisol (Seeman, Singer, & Charpentier, 1995). Examination of cortisol and ACTH levels throughout the post-challenge recovery period also indicated that women experienced more prolonged elevations in their cortisol levels and a similar, although somewhat more variable pattern for their ACTH responses (Seeman et al., 1995). In addition to higher nighttime cortisol leve ls, older adults also undergo well known age impairments in sleep; decreased slow-wave sl eep and increased sleep fragmentation (Bliwise, 1993; Prinz et al., 1990). In a prior pilot study, we reported that cortisol (as indexed by 24 hour free urine cortisol levels) was associated signif icantly with impaired sl eep in healthy seniors under conditions of a mild stress (Prinz, Bailey, Moe, Wilkinson, & Scanlan, 2001). Furthermore, another study found that cortisol was generally unrelated to sleep in the baseline condition, in the intravenous stress c ondition (intravenous device inserted in the hand), cortisol correlated inversely w ith indices of quality sleep (s tages 2, 3, and 4 sleep, and sleep 74

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efficiency) and positively with a measure of im paired sleep (EEG activity during slow-wave sleep) in both women and men (P rinz, Bailey, & Woods, 2000). Si milar results were obtained when examining cortisol and sleep responses to st ress, as indexed by residu als of baseline values regressed on intravenous stress values. These resu lts confirmed an extend earlier observations in a smaller subset of this population (Prinz et al., 2001) and are congruent with published studies that showed that sleep is impaired in a va riety of clinical and experimental conditions characterized by heightened HPA activity (Dubrov sky, 1993; Ferrari et al ., 1997; Montplaisir, Petit, Gauthier, Gaudreau, & Decary, 1998). Th ese results indicate that the HPA-sleep relationships are also detectable in healthy seniors (explaining up to 36% of the variance) when free 24 hour cortisol is used to index overall HPA activity in response to a mild 24 hour stress (Prinz et al., 2000). Salivary IgA and Physiologic Changes An important parameter of immune status is salivary secretory IgA. Secretory IgA is the main immunological defense of mucosal surfaces and levels measured in saliva are thought to be representative of functi onal status of the entire mucosal im mune system (Mestecky, 1993). The primary functional role of IgA antibodies is to pr otect epithelial surfaces fr om infectious agents (Janeway, Travers, Walport, & Shlomchik, 2005). IgA antibodies prevent the attachment of bacteria or toxins to epithelial cells and the abso rption of foreign substances. The principal sites of IgA synthesis and secretion ar e the gut, the respiratory epithe lium, the lactating breast, and various other exocrine glands such as the saliv ary and tear glands (Janeway et al., 2005). Secretory IgA thus acts as a first line of defe nse against colonization of infectious agents on mucosal surfaces by neutralizat ion and elimination of vira l pathogens (Gleeson & Pyne, 2000). It has been suggested that low levels of salivary IgA reduce the resistance to infection as 75

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76 indicated by the finding of a pr ecise relationship between IgA c oncentrations and the risk of infection (Gleeson et al., 1999; Pyne & Gleeson, 1998). Studies have explored the relationship between salivary IgA and chronic exposure to psychological stress or individuals particularly prone to stress. Such studies consistently revealed stress-related down regulation (Evans, Hucklegbridge, Clow, & Doyle, 1995; Lucas, Ponsonby, & Dear, 2007). Hucklebridge and coll eagues (1998) have shown that the acute response to a psychological challe nge is a rise in IgA. This mobilization of IgA has been reported in response to acute labor atory psychophysiological stress tests, such as public speaking (Bristow, Hucklebridge, Clow, & Evans, 1997), co mputer game challenge (Carroll et al., 1996), and mental arithmetic (Willemsen et al., 1998). It has also been reported in response to music (Ramos Goyette & DeLuca, 2007), and relaxatio n training on medical workers (Taniguchi, Hirokawa, Tsuchiya, & Kawakami, 2007). Since cortisol can also be measured in saliva and reflects circulating free cortisol levels it is possible to measure simultaneously the secretory immune system and HPA ne uroendocrine responses to psychological manipulation. In summary, the theoretical framework for Ca regivers and Ineffective Sleep builds on the Stress, Appraisal, and Coping model. It enco mpasses the desired components of the Stress, Appraisal, and Coping model and interprets th em in a conceptually meaningful way. The theoretical framework will without a doubt explore the sleep patterns in high and low stressed caregivers of cognitively impaired community-d welling individuals who worry about nighttime activity. It will also absolutely explore the prop osed link between stress of caregiving role and the physiologic/psychologic change s that occur in high and low stressed caregivers who worry about nighttime activity.

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Causal Antecedents Mediating Processes Outcomes 77 Figure 2-1. Theoretical framework for car egivers and ineffective sleep (adapted from Lazarus & Folkmans Theory of Stress & Coping, 1984) Stressors in Caregiving Situation Person Variables -Age -Gender -Race Environment Variables -Caregiver Burden (CBI) -Caregiver with Increased Nighttime Activity -Perceived Stress (PSS) Primary Appraisal (ACS) Caregivers Physiological Well-being -Immune (IgA) & -Endocrine Dysfunction (Salivary Cortisol) Problem-Focused Coping -Fragmented Sleep (SEs & SEo) Emotion-Focused Coping -Caregiver worried about sleeping through night (Caregiver Worry Scale) 1a 4a 4b & 4c Secondary Appraisal 2 a & 3

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CHAPTER 3 MATERIALS AND METHODS The purpose of the proposed study is to expl ore sleep patterns in high and low stressed caregivers of cognitively impaired community-d welling individuals who worry about nighttime activity and to explore the proposed link be tween stress of caregiving role and the physiologic/psychologic changes that occur in caregivers with high and low levels of stress that worry about nighttime activity. In this chapter, the methodological issues in relation to the study will be discussed, including specific issues about design, sampling, and data collection procedures. The instrumentation and measurements are also presented. Fi nally, the protection of human subjects, data management, and statistical analysis issues will be discussed. Specific aim 1: To describe differences in sleep patterns between caregivers with high and low levels of stress. o Hypothesis 1a: Caregivers with higher levels of stress will have more sleep fragmentation (lower sleep efficiency a nd higher number of awakenings) and more daytime sleepiness. Specific aim 2: To describe daytime salivary cor tisol levels among caregivers with high and low levels of stress. o Hypothesis 2a: Caregivers with higher levels of stress will have more abnormal daytime salivary cortisol levels. Specific aim 3: To describe IgA levels among caregiv ers with high and low levels of stress. o Hypothesis 3a: Caregivers with higher levels of stress will have decreased salivary IgA levels. Specific aim 4: To test whether the Caregiver and In effective Sleep model predicts the relationship between caregivers with high and low levels of stress, fragmented sleep, and caregiver well-being. o Hypothesis 4a: The relationship between high stressed caregivers and fragmented sleep will be moderated by worrying about sleeping through nighttime activity. o Hypothesis 4b: Fragmented sleep will mediate th e relationship between level of caregiver stress and daytime salivary cortisol levels. 78

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o Hypothesis 4c: Fragmented sleep will mediate th e relationship between level of caregiver stress and salivary IgA levels (Figure 2-1). Design A nonexperimental prospective cr oss-sectional design was used to examine sleep patterns in stressed caregivers of cogni tively impaired community dwelli ng individuals and to examine the physiologic changes that oc cur in caregivers who worry about nighttime activity. Crosssectional studies are especially appropriate fo r describing the status of phenomena or for describing relationships among phenomena at a fi xed point in time (Polit & Hungler, 1995). The phenomena under investigation are ca ptured, as they manifest th emselves, during one period of data collection. Data for this study was collected over a one-w eek time period. Researchers visited each caregiver two times on Day 1 and Day 7 (Table 3-1 represents a schema of the design). Sample Purposive sampling was used to recruit 30 care givers. Purposive sampling is a type of non-probability sampling that targets a particular group of people (Polit & Hungler, 1995). It is characterized by the use of judgment and a dilb erate effort to obtain representative samples by including typical areas or groups in the samp le (Polit & Hungler, 1995). In purposive sampling, researchers sample with a purpose in mind. Researchers usually have one or more specific predivined groups they are seeking. Purposiv e sampling does not produce a sample that is representative of a larger populati on, but it can be exactly what is needed in some cases-study of organization, community, or some other clearly defined and relatively limited group (Polit & Hungler, 1995). 79

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Participant Characteristics/Caregiver Inclusion criteria The inclusion criteria for the caregive rs in the study were the following: Able to speak and read English 21 years of age or older Lliving with the care recipient Providing informal (unpaid) care only to the care recipient on a daily basis Functioning independently Using sleep medication less than 3 nights per week Willing to provide saliva samples. The rationale for these inclusions is to control for extraneous factors th at could influence the salivary cortisol and salivary IgA. Exclusion criteria The exclusion criterion for the caregivers were the following Experiencing a major life event within the past 6 months such as a death of a first degree relative, divorce, surgery, or a change in primary residence Chronic illness requiring daily or weekly professional care such as diabetes, congestive heart failure, cancer, or renal failure or immunosuppressive therapies except physical therapy and/or occupational therapy Taking beta blockers Treatments containing glucocorticoids Diagnosed with a sleep disorder such as sleep apnea or re stless leg syndrome. The rationale for these exclusions is to control for extraneous factors that could influence the salivary cortisol and salivary IgA. Participant Characteristics/Care Recipient Inclusion criteria The inclusion criteria for the care recipient were the following: Able to speak and read English 21 years of age or older Living with a primary caregiver A confirmed diagnosis of dementia. 80

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Exclusion criteria The exclusion criteria for the care recipient were the following: Experiencing a major life event within the past 6 months such as a death of a first degree relative, divorce, surgery, or a change in primary residence Chronic illness requiring daily or weekly professional care such as diabetes, congestive heart failure, cancer, or renal failure. Sample Size A pilot study is a small-scale version or trial run of a major study (Polit & Hungler, 1995). Pilot studies play an important role in he alth research, in providing information for the planning and justificatio n of randomized controlled trials (RCTs) (Anderson & Prentice, 1999). RCTs are costly and time-consuming and major f unding bodies such as the National Institute of Nursing Research require this evidence before large amounts of money will be allocated. A major reason for conducting a pilot study is to determine initial da ta for the primary outcome measure, in order to determine effect sizes to estimate a sample size with adequate power for a larger trial (Ross-McGill et al., 2000; Stevinson & Ernst, 2000). This can be in the form of an estimate of location (mean) and variab ility (standard de viation) of measurements for those in the control group for a continuous outcome measure, or an estimate of the proportion on the standard treatment for a categorical outcome measure (Lancaster, Dodd, & Williamson, 2004). The number of patients to be included in a pilot study will depend on the parameter(s) to be estimated. A general rule of thumb is to ta ke 30 patients or greater to estimate a parameter (Browne, 1995). The principal investigator chose 30 stressed caregivers to estimate the outcome measures, sleep patterns, salivary cortisol and IgA. Th is pilot study will estimate an effect size that can be used in future subsequent full-scale clinical trials and determine potential variables that may improve sleep in caregivers of PWD. 81

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Subject Retention All subjects were paid $25.00 upon completi on of the study. All appointments were made at the convenience of the subjects a nd were conducted in the subjects home when necessary. Measurements In this study 13 instruments were used for measuring the variables of interest which included the following: Demographic questionnaire Center for Epidemiologic Depression Scale (CES-D) Perceived Stress Scale (PSS) Appraisal Caregiving Scale (ACS) Caregiver Nighttime Worry Scale Epworth Sleep Scale (ESS) Pittsburgh Sleep Quality Index (PSQI) Sleep diary Actigraphy Salivary cortisol Salivary IgA Mini-Mental Status Examination (MMSE) Neuropsychiatric Inventory Questionn aire (NPI-Q) (Table 3-1). The characteristics of the inst ruments including the number of items, the formats, the scoring, and the psychometric properties are described individually in this se ction. Examples of uses of the instruments found in recent literature are also explained. Caregiver Questionnaire Measures Demographic questionnaire. A researcher-developed de mographic questionnaire was used to describe the characteristics of the care recipient as well as the caregiver. The characteristics of the caregiver were represented as control variables and were measured by the Demographic Questionnaire. The Demographi c Questionnaire included age, gender, race, educational level, marital and employment st atus, duration of care giving, medications, and 82

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chronic health conditions. The general hea lth questionnaire was also included in the Demographic Questionnaire. The si ngle question asked care givers to rate their overall health for the past year on a scale from excellent to poor. There is widespread agreement that this simple global question provides a useful summary of how pa tients perceive their ove rall health status. This view is also borne out by the large number of studies that have consistently shown, in a wide range of disease areas, that self-reported health is a powerfu l predictor of clinical outcome and mortality (Fayers & Sprangers, 2002). Center for Epidemiologic Studies depression scale. Depression was measured by using the CES-D, which is a self-administered instrument that asks subjects about the frequency of symptoms during the past week. The CES-D (Radloff, 19 77) is a well-known measure of depression. The content of its 20 items was gl eaned from previous items used to measure depression such as those used in the Beck Depression Inventory and Zung Depression Scale (Zung, 1967). Each question uses a 4-point scale; except for four positive questions, a higher score indicates greater depression. Question scores wi ll be summed to provide a total depression symptom score from 0 to 60 and it will be com puted that higher scores indicate a greater frequency of depressive sympto matology during the previous w eek. Although the scale does not diagnose clinical depression, a CES-D score equal or greater than 16 on the range of 0 to 60 has been used to identify those with significan t depressive symptomatology (Myers & Weissman, 1980). If more than five items on a scale are missing, a score is generally not calculated (Sayetta & Johnson, 1980). If one to five items are mi ssing, scores on the completed items will be summed; this total score is divided by the numbe r of items answered and multiplied by 20. This 83

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20-item measure has a high alpha reliability (C ronbachs alpha is .85 to .91) as well as discriminate validity (Haug, Musil, Warner, & Morris, 1997; Rose-R ego, Strauss, & Smyth, 1998). For validity, researchers compared CES-D scores with the scores from a community sample, a group of depressed patients, and pati ents with other psychiatric conditions. The average scores were 38.1 for 148 acutely depresse d patients, 14.9 for 87 recovered depressives, 13 for 50 schizophrenics, and 9.1 for 3,932 adults in the community (Weissman, Sholomskas, Pottenger, Prusoff, & Locke, 1977). The CES-D has been widely used to assess de pression in caregivers who are living in the community (Cohen, Colantonio, & Vernich, 20 02; Hooker, Manoogian-O'Dell, Monahan, Frazier, & Shifren, 2000; Loewenstein et al., 200 1). Hooker and colleagues (2000) studied 175 spouse caregivers for patients with AD and Pa rkinsons disease. Wives in the AD group reported significantly greater depression and were significantly more stressed and anxious than were AD caregiving husbands. Gallicchio and colleagues (2002) studied 320 informal community caregivers of dementia patients. They discovered that poor perceived ca regivers health and more behavior disturbance in the care recipient was associated with signi ficantly higher odds of high levels of caregiver burden and depression. ORourke and colleagues (2007) also suppor ted that depressive symptomatology is significantly associated with re duced physical well-being among family or unpaid caregivers of persons with dementia. Depressive symptomato logy was measured over time and appeared to be significantly associated with re ports of poorer health status at all points of measurement (O'Rourke et al., 2007). 84

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Perceived Stress Scale. The Perceived Stress Scale (PSS) (Cohen, Kamarck, & Mermelstein, 1983) is a 14-item, self-reported un idimensional instrument developed to measure perceived stress in response to situations in a persons life. Respondents report the prevalence of an item within the last month on a 5-point scale, ranging from never to very often (Cohen et al., 1983). It is a measure of the degree to which situ ations in ones life are appraised as stressful. Items were designed to tap how unpredictable, uncontrollable, and overl oaded respondents find their lives. The scale also includes a number of direct queries about current levels of experienced stress (Cohen et al., 1983). The PSS was designed for use in community samples with at least a junior high school education. The items are easy to understand and th e response alternatives are simple to grasp. Moreover, the questions are of a general nature and hence are relatively fr ee of content specific to any subpopulation group (Cohen et al., 1983). The questions in the PSS ask about feelings and thoughts during the last month. In each case respondents are asked how often they felt a certain way. It is an economical scale that can be administered in only a few minutes and is easy to score. McCallum and colleagues (2006) studied 30 African American and 24 European American female dementia caregivers and noncar egivers (48 African American and 15 European American). As compared with the European caregivers, African American caregivers were higher in stress-related growth, religious coping and cultural justif ication for caregiving. Despite these differences, levels of depr essive symptoms and perceived st ress were similar between the two groups (r = -0.261). A study conducted by Glaser and colleagues (2000) measured antibody titers of current caregivers, former caregivers, and control su bjects after vaccination with a pneumococcal 85

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bacterial vaccine. Group differences in self -report stress on the PSS at baseline were in the expected direction, although they did not reac h significance; caregiver s had a mean of 16.73 2.82, compared with 10.46 2.44 for former caregivers and 9.61 1.73 for controls. Kiecolt-Glaser and collegues (1995) studied 13 women caring for demented relatives and 13 age-matched controls and found that caregivers reported signi ficantly more stress on the PSS than did controls on baseline. Vedhara and co lleagues (1999) studied 50 spousal caregivers of PWD and 67 controls and found significantly highe r scores of emotional distress on the PSS in caregivers versus controls. Appraisal Caregiving Scale. The Appraisal Caregiving Sc ale (ACS) is a 53-item selfreport instrument designed to measure the meaning of the illness-caregiving situation in terms of intensity of each of four appraisal dimensi ons: harm/loss (15 items), and benign (8 items) (Oberst, Thomas, Gass, & Ward, 1989). It wa s developed based on the Lazarus and Folkman stress model (1984). The ACS measures elements of primary, secondary, and initial reappraisal and is most appropriately used after an initia l stressful encounter has occurred and coping has begun. The items were written to address apprai sal in five broadly de fined areas reflecting potential stress responses associated with car egiving: caregiving tasks, relationships, and interpersonal support, lifestyle, emotional and physical health, and ove rall personal impact (Oberst et al., 1989). An earlier 36-item versi on of the ACS was validated with seven persons engaged in caring for a family member with Al zheimers disease, and their suggestions were used in revising and adding items. The current 53-item scale was validated by six clinical experts familiar with the underlying theoretical model and with the caregivi ng literature (Oberst et al., 1989). All were able to classify 51 of the items; two items incorre ctly classified by three experts were revised to 86

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reflect the intended appraisal more accurately. A 5-point Likert-type response format was used, with choices ranging from 1 (very untrue) to 5 (very true). Higher scores on each of the subscales represent greater intens ity of that appraisal dimension (Oberst et al., 1989). The alpha coefficients in this study were: harm/loss, r =0.87; threat, r =0.91, challenge, r =0.72; benign, r =0.77; and caregiver load: r =0.87. Carey and colleagues (1991) used the ACS on 49 family caregivers who were caring for adult family members receiving outpatient chem otherapy at a midwestern cancer center. Alpha coefficients in this study were: harm/loss r =0.91; threat, r =0.91; challenge, r =0.85; benign, r =0.74; and benefit, r =0.85. Alpha reliabilities for ACS subscales (threat =.90, benign=.73, benef it=.74), as well as content and construct validity, we re reported as being acceptabl e in a sample of 240 family caregivers of cancer patients (Care y, Oberst, McCubbin, & Hughes, 1991). Caregiver nighttime worry scale. A tool developed by Dr. Meredeth Rowe was used to measure caregiver worry about nighttime activity. Th e tool contains five questions displayed on a 100 cm visual analog scale. This tool has been used previously by Dr. Meredeth Rowe in two other studies. The caregivers are asked to indicate on the visual analog scale how worried or concerned they are about problems a ssociated with nighttime activity. Sleep diary. Subjects completed a sleep diary for each day of actigraphy data collection (7 days), which provided subj ective estimates of eight sleep-wake variables: 1. sleep onset latency (time from initial lights out until sleep onset); 2. number of nighttime awakenings (number of total awakenings during night); 3. wake time after sleep onset (time spent awake after initial sleep onset until last aw akening); 4. total sleep time (com puted by subtracting total wake time from time in bed); 5. sleep efficiency percentage (ratio of total sleep time (TST) to total 87

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sleep time spent in bed 100); 6. total wake ti me (time spent awake from initial lights out until time out of bed in the morning); 7. sleep quality rating (scaled from 1=very poor to 5=excellent); and 8. total nap time (total amount of time spent sl eeping prior to bedtime) (Lichstein, Riedel, & Means, 1999; K. L. Lichstein, Durren ce, Taylor, Bush, & Riedel, 2003). It is important to have both objective a nd subjective sleep measures for these sleep parameters because one may be a better predictor of the perception of sleep quality and fatigue (Yamadera, 1995). Very little prio r research exists comparing th e two measures' effects on these perceptions in the caregiver population. Epworth Sleepiness Scale. The Epworth Sleepiness Scale (ESS) is a brief selfadministered retrospective questionnaire of the be havioral aspects of sleep iness to evaluate selfreports of sleep tendency (Johns, 1991). It is an 8-item scale that rate s the likelihood of dozing off or falling asleep in a vari ety of everyday settings (e.g., wa tching television) (Johns, 1991). The ESS is a four-point scale with 0=never doze off and 3=high chance of dozing off. The ESS has been used for proxy reports in demented and nondemented geriatric populations (DJ Foley, Masake, & White, 2003; Ki ngshott, Sime, Engleman, & Douglas, 1995). A score of 10 or more is considered sleepy. E SS scores of 16 or higher are indicative of a high level of daytime sleepiness. The scores were su mmed and vaired from 0 to 24 with higher scores indicating greater sleepiness. Th is measure has high 5-month-test-r etest reliability in normals (r =.82) as well as high intern al consistency (Cronbachs al pha=.88) (Johns, 1991). McCurry and colleagues (2000) studied 17 caregivers and found that 36% of patients scored a 16 or higher. Pittsburgh Sleep Quality Index. The Pittsburgh Sleep Quality Index (PSQI) is a selfreported questionnaire that consists of 19 questions. These 19 questions assess a wide variety of 88

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factors relating to sleep quality, including esti mates of sleep duration and latency and of the frequency and severity of speci fic sleep-related problems (Buysse et al., 1989). These 19 items are grouped into seven component scores each weighted equally on a 0-3 scale. The seven component scores are then summed to yield a global PSQI score, which has a range of 0-21; higher scores indicate worse sleep quality (Buysse et al., 1989). The seven components of the PSQI are standardi zed versions of areas routinely assessed in clinical interviews of patients with sleep /wake complaints (Buysse et al., 1989). These components are subjective sleep qu ality, sleep latency, sleep durati on, habitual sleep efficiency, sleep disturbances, use of sleeping medications, and daytime dysfunction. The PSQI requires 510 minutes for the subject to complete and 5 mi nutes to score (Buysse et al., 1989). The PSQI has been widely used to assess sleep problems in the elderly (King, Oman, Brassington, Bliwise, & Haskell, 1997; McCurry et al., 2005; McKi bbin et al., 2005; Singh, Clements, & Fiatarone, 1997). During 18 months of field testing with the PSQI, Buysse and colleagues (1989) demonstrated that (a) subjects and patients find the index easy to use; (b) the seven major components of the index as well as the 19 individual questions, are internally cons istent; c) the global scores, component scores, an d individual question responses are stable across time; (d) the validity of the index is supported by its ability to discriminate pa tients from controls and, to a more limited degree, by concurrent polysom nographic findings (Buy sse et al., 1989). Buysse and colleagues (1989) found that the PSQI had an overall reliability coefficient (Cronbachs ) of 0.83 in the seven component scores wh ich indicates a high degree of internal consistency. In other words, each of the se ven components appears to measure a particular aspect of the same overall construct, such as sleep quality. The largest component-total 89

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correlation coefficients were found for habitual sleep efficiency and s ubjective sleep quality (0.76 for each), and the smallest correlation coe fficient was found for slee p disturbances (0.35). Overall consistency (test-retest reliability) of the PSQI was better fo r the entire subject pool than for any specific group (Buysse et al., 1989). Ninety-one patients completed the PSQI on two separate occasions. Paired t -tests for the global PSQI score, as well as the seven individual component scores, showed no significant diffe rences between T1 and T2 (Buysse et al., 1989). The identification of good and poor sleepers for research studies relies on subjective assessments of sleep quality, c linical interviews, and polysomnogr aphic studies (Buysse et al., 1989). The PSQI provides a standardized, quantita tive measure of sleep quality that quickly identifies good and poor sleepers, and compares fa vorably with the gold standard of clinical and laboratory diagnosis. Good and poor sleepers consisted of healthy control subjects and depressed or sleepdisordered patients. A global PSQI score >5 provided a sensitive and specific measure of poor sleep quality, relative to clinical and laboratory measures. Age and sex did not strongly correlate with the PSQI component scores, but they were significant covariates for the global score (Buysse et al., 1989). The PSQI is primarily intended to measure sleep quality and to identify good and bad sleepers, not to provide accurate clinical diagnoses (Buysse et al ., 1989). Nevertheless, responses to specific questions ca n point the clinician toward ar eas for further investigation. This is particularly true for the sleep dist urbances component, which may guide clinical evaluations for specific patients, even though mean scores do not discriminate between groups. Furthermore, a PSQI global score > 5 indicates that a subject is ha ving severe difficulties in at 90

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least two areas, or moderate difficulties in mo re than three areas (Buy sse et al., 1989). The global score is therefore transparent, i.e., it conveys information about the severity of the subjects problem, and the number of problem s present through a single simple measure (Feinstein, 1987). McKibbin and colleagues (2005) examined th e differences in objective and subjective measures of sleep between caregiv ers and noncaregivers. They us ed the PSQI and found that in the caregiver-severe, caregiver-mild, and noncareg ivers groups all reported difficulty with sleep, as reflected by mean Global PSQI scores > 5. An alyses of PSQI revealed a significant age x caregiver status interaction fo r the Sleep Latency subscale (F 2,104 =3.28, df, P<.05). Specifically, the older caregiver-severe group re ported longer latency than those in older noncaregivers group (P<.01). Main effects were also found for careg iver status on the PSQI total score (F=2,102=5.35, 2/102 df, P<.01), with the caregiver-severe group reporting poorer sleep quality than noncaregivers (P< .05), and both the caregiver-sever e (P<.05) and caregiver mild (P<.01) groups reporting gr eater daytime dysfunction th an the noncaregivers group. McCurry and colleagues (2006) examined the re lationship between caregivers reports of sleep disturbances in persons with Alzheimer di sease and actigraphic reco rds of patients sleepwake activity, and explored the factors associated with discrepancies in th is relationship. They used the PSQI and found that 46 caregivers had a mean of 8.6 on the Global PSQI scores. This PSQI global score is > 5 which indi cates that the 46 caregivers had severe difficulties in at least two areas, or moderate difficulties in more than three areas. Actigraphy Actigraphy is a reliable and vali d measure of sleep as compared to polysomnography and has been used in previ ous studies involving ol der adults and in populations with dementia (Friedman et al ., 1997; McCrae et al., 2005; Sadeh, Sharkey, & 91

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Carskadon, 1994). Actigraphy was used as the obj ective sleep measure which was collected using the ActiWatch-L (Figure 3-1). Actigraph y data was collected using the two-channel ActiWatch-L that has an internal ambi ent light sensor (max 150,000 lux) and an omnidirectional accelerometer with a sensitivity of 0.01 g-force (Mitter, 2001). The ActiWatch-L was worn on the subj ects non-dominant wrist. The integrated degree and speed of motion se nsed was used to calculate counts or values of activity. This dig itally integrated method of examining motion is recommended as the most accurate, reflecting intens ity of movement as well as nu mber of motions (Ancoli-Israel et al., 2003; Gorny & Allen, 1999; Mitter, 2001). A 30-second recording epoch will be used which allows storage of 7.5 continuous 24-hour periods of data. In the study, seven days and nights of sleep data was collected. This mi nimum was chosen because recommendations made by the American Association of Sleep Medicine in dicate that actigraphic st udies should collect at least three days/nights of data for adequate representation of the s ubjects sleep patterns (Kushida et al., 2001). Data was downloaded into a PC and analyzed using Actiware-Sleep v. 5.0 (Mini Mitter, 2001). The medium threshold/sensitivity setting wa s used, where total activ ity values of > 40 are necessary in order to score an e poch as wake. This setting was chosen to take advantage of both sensitivity and specificity without loss of accura cy, as compared to polysomnography (Kushida et al., 2001), since both sleep and wake parameters are important in older adults and caregivers. Sleep diary recordings, ambient light, and act ivity were used in conjunction to help determine a Bedtime and Out-of-Bed analysis window. Because of problems relying on subjects to consistently press an event marker button at these times, the researchers used ActiWatch-L (Figure 3-1) with a light channe l that indicates a sudden decrease in light when a person retires 92

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( Bedtime ) and an increase when he/she leaves the bed (Out-of-Bed ). The principal investigator will be responsible for establishing all BedtimeOut-of-Bed analysis windows to ensure they were set similarly across all subjects. The princi pal investigator was trai ned in the use of the ActiWatch-L by the same senior researcher. Fragmented sleep was measured using these variables from the actigraphy analysis as produced by Actiware software: sleep efficiency (per cent of time in bed scored as sleep), number of sleep bouts (time of sleep between awakenings), and move ment and fragmentation index (ration of mobile and immobile minutes during be dtime). Insomnia was measured using these variables: sleep latency (time in bed before ini tial sleep period) and actual awake time (total minutes awake after sleep onset). Caregiver Immune and Endocrine Measures Salivary cortisol. Salivary cortisol has been used fr equently to measure the impact of stress on the endocrine system (King & Hegadore n, 2002; G. E. Miller et al., 2004). Since the natural secretion of cortisol has a diurnal pattern it is important to sample several times each day and use the pattern of cortisol secret ion throughout the day as the variable. The participant was provided a salivary cortisol kit and was instructed to engage in the collection procedure on Days 3 and 4. The collec tion kit consisted of (a ) 8 polypropylene 50 mL tubes pre-labeled with the date and time of each scheduled co llection, (b) a permanent marker, (c) a specimen transport bag with a biohazard sym bol, and (d) a brochure detailing instructions for collecting the salivary cortisol specimens. Sp ecifically, the participan t was asked to provide 4 saliva samples on Days 3 and 4. The partic ipant was instructed to collect samples upon awakening, 30 minutes after awakening, 1100, and 1700 hours on each day. The subject was asked to abstain from eating, smoking, or drin king for 30 minutes pr ior to obtaining the specimen. 93

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At the appropriate time, the participant sw allowed to dry her mouth and then took one polypropylene tube from the collection kit; a nd provided a nonstimulated saliva sample. Participants were instructed to re frigerate all samples they collected. On Day 7, the samples were collected from pa rticipants and were transferred to the USF College of Public Health Biobehavioral Nursi ng Laboratory. Once transferred, samples were pipetted into microcentrifuge tubes (Fisher Scie ntific) and then centrifuged at 3000 R.P.M. for 15 minutes. They were then pipetted into Fisher brand siliconized/low re tention microcentrifuge tubes (Fisher Scientific), and stored in the -80 C freezer in the College of Public Health Biobehavioral Nursing Laboratory until assayed. Saliva was assayed under the supervision of Dr. Maureen Groer using a High Sensitivity Salivary Cortisol Enzyme Immunoassay Kit from Salimetrics, Inc. (State College, PA) according to kit instructions (Salimetrics Inc 96-Well Kit). Intra-assay coe fficients of variation, inter-assay values, and assay sensitivity were calculated. Cortisol values we re examined for outliers and any raw data that fell outside the physiological range (0.01-2.54g/dl ) was excluded from analyses. Salivary IgA. The same kit as described above was also used for the salivary IgA collection. The collection kit c onsisted of (a) 8 polypropylene 50 mL tubes prelabeled with the date and time of each scheduled collection, (b) a permanent marker (c) a specimen transport bag with a biohazard symbol, and (d) a brochure detaili ng instructions for coll ecting the salivary IgA specimens. Specifically, the participant was aske d to provide 4 saliva samples on Days 3 and 4. The participant was instructed to collect samples upon awakening, 30 minutes after awakening, 1100, and 1700 hours on each day. The subject was asked to abstain from eating, smoking, or drinking for 30 minutes prior to obtaining the specimen. 94

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At the appropriate time, the participant sw allowed to dry her mouth and then took one polypropylene tube from the collection kit; and provided a non-stimulated saliva sample. Participants were instructed to re frigerate all samples they collected. On Day 7, the 8 samples were collected from participants and were transferred to the USF College of Public Health Biobehavioral Nursing Laboratory. Once transferred, samples were pipetted into microcentrifuge tubes (Fisher Scientific) and then centrifuged at 3000 R.P.M. for 15 minutes. They were then pipetted into Fisherbrand sili conized/low retention microcentrifuge tubes (Fisher Scientific), and st ored in the -80 C freezer in the College of Public Health Biobehavioral Nursing Laboratory until assayed. Saliva was assayed under the supervision of Dr. Maureen Groer using a High Sensitivity Salivary Secretory IgA Indirect Enzyme Immunoassay Kit from Salimetrics, Inc. (State College, PA) according to kit instructions (Salimetrics Inc 96-Well Kit). Intra-assay coefficients of variation, inter-assay values, and assay sensitiv ity were calculated. IgA values were examined for outliers and any raw data that fell outsi de the physiological range was excluded from analyses. Care Recipient Questionnaire Measures Neuropsychiatric Inventory Questionnaire. The Neuropsychiatric Inventory (NPI) is a validated informant-based interview that is widely used in clinical research studies to evaluate neuropsychiatric symptoms and their response to treatment in dementia patients (Cummings et al., 1994). The NPI was develope d by Cummings and colleagues (1994) in order to thoroughly assess 12 neuropsychiatric symptom domains common in dementia. The NPI is a retrospective (to 1 month) caregiver informant interview covering the following domains: delusions, hallucinations, agitation/aggression, dysphor ia/depression, anxiet y, euphoria/elation, 95

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apathy/indifference, disinhibition, irritability/l ability, aberrant motor behaviors, nighttime behavioral disturbances, and appetite/eating disturbances (Cummings et al., 1994). The NPI was originally designed to help distinguish between different causes of dementia. The scripted NPI interview in cludes a compound screening question for each symptom domain, followed by a list of interrogatives about domain specific behaviors that is administered when a positive response to a scre ening question is elicited (Cummings et al., 1994). This is a brief semistruct ured interview administered by a clinician to a caregiver rating the severity and frequency of the behavior. Severi ty of behavior is scored (1-3) and frequency of behavior is scored (1-4). A maximum score of 12 (frequency X severity) is possible for each domain. Frequency and severity rating scales have defined anchor points to enhance the reliability of caregiver responses Caregiver distress is rated for each positive neuropsychiatric symptom domain on a scale anchored by scores of 0 (not distressing at all) and 5 (extremely distressing). The NPI has been shown to have adequate test -retest interrater reliab ility, as well as good concurrent validity with the relevant items from the Behavioral Pathology in Alzheimers Disease Rating Scale (BEHAVE-AD) (Reisberg et al., 1987) and the Hamilton Rating Scale for Depression (Hamilton, 1967). The Neuropsychiatric Inventory-Questionna ire (NPI-Q) was designed to expand the applicability of the NPI to routin e clinical settings (Kaufer et al., 2000). The NPI-Q differs from the standard NPI in several ways. It is given as a two-page self-admin istered questionnaire, as opposed to an interview. The NPI-Q was cro ss-validated with the NPI in 60 Alzheimers patients (Kaufer et al., 2000). The NPI-Q is a br ief, informant-based, 2-page, self-administered assessment of neuropsychiatric symptoms and associated caregiver distress. Written instructions 96

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are provided to the caregiver who then uses anch or points to rate sympto m severity and caregiver distress. There is a screening question from the NPI that covers each of the 12 core symptom manifestations. The wording of the screening question used in the NPI-Q (e.g., Apathy: Does he/she seem less interested in hi s/her usual activities or in the activities of othe rs?) is taken directly from the NPI screening questions, although in some cases the compound screening questions were shortened. Informants are asked to circle yes or no in response to each screening question, and to either pr oceed to the next question if the answer is no or to rate the symptoms present in the last 4 weeks if the answer is yes. Neuropsychiatric symptoms are assessed in terms of severity on the same three-point scale as the NPI (1-mild, 2-moderate, 3-severe) using similar anchor points. Frequency of symptoms is not assessed. The rationale for assessing only symptom severity is more strongly correlated with caregiver distress (i.e. more clinically significa nt) than how often the symptom occurs (Kaufer et al., 1998). In addition, severity and frequency scores are highly correlated on the NPI (Cummings et al., 1994). The total NPI-Q severity score represents th e sum of individual scores and ranges from 0 to 36. Caregiver distress associated with the sy mptoms is rated 0-5 on an anchored 0 to 5 point scale identical to that used in the NPI (Kaufe r et al., 1998). The total NPI-Q distress score represents the sum of i ndividual symptom scores and ranges from 0 to 60. Informants typically complete the NPI-Q in 5 minutes or less. Kaufer and colleagues (2000) found that in 60 caregivers the NPI-Q showed adequate test-retest reliability and convergent validity w ith respect to total and individual symptom domain scores and caregiver distress ratings on th e NPI. The NPI-Q symptom severity scale was highly correlated with both the composite freq uency X severity score from the NPI and the 97

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analogous NPI severity score. The degree to which NPI and NPI-Q total symptom scores were correlated was greater in subjec ts with more severe dementia (Low MMSE group compared with High MMSE group) but was still robust in the group with less severe dementia (Kaufer et al., 2000). Both NPI and NPI-Q total scores were significantly correlated to MMSE score in Low MMSE group ( r =0.44 for both), whereas no association between MMSE score and NPI or NPIQ ratings of neuropsychiatric symptoms was observed in the High MMSE group (Kaufer et al., 2000). These findings suggest that neuropsychi atric symptom manifestations in communitydwelling AD patients may become a more consistent feature of the diseas e as it progresses over time. Alternatively, informants may become more attuned to observing and reporting neuropsychiatric symptoms as they gain more experience in the caregiver role (Kaufer et al., 2000). Neuropsychiatric symptom prevalence as assessed by the two scales differed by 5% overall, and it tended to be higher on the NPI-Q (K aufer et al., 2000). This finding is consistent with the approximately 5% false-positive rate observed on NPI screeni ng questions (Cummings et al., 1994) However, interscale differences were less than 2% for symptoms that were moderate to severe in intensity, suggesting that the two scales are similar in capturing clinically significant neuropsychiatric mani festations (Kaufer et al., 200 0). The NPI-Q rated symptom prevalence was >5% higher compared with the NPI on four domains (hallucinations, dysphoria, aberrant motor behaviors, and appetite/eating di sturbances). However, moderate to severe symptom ratings in all four differed by less than 2% (Kaufer et al., 2000). Mini-Mental Status Examination The Mini-Mental Status Examination (MMSE) is a brief cognitive screening measure that is divided into two secti ons. The first section requires only verbal responses; assesses orientation to time and place, immediate and recall memory, and 98

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attention; and has a maximum score of 21 (F olstein, Folstein, & McHugh, 1975). The second part assesses the ability to name, follow verbal and written commands, write a sentence spontaneously, and copies a simple line drawi ng and has a maximum score of 9. Subjects can obtain a score between 0 and 30. The lower the score is, the higher the cognitive impairment. Folstein and colleagues (1975) established reli ability and validity for their instrument. The MMSE was given to 63 normal subjects and to a group of 206 patients with a variety of mental disorders, including dementia syndrom es, schizophrenia, personality disorders, depression with cognitive impairment, and affec tive disorders of the depressed type, and to 63 normal subjects. The MMSE was found to be reli able on a 24-hour and 28-day retest by single or multiple examiners. When the MMSE was given twice, 24 hours apart, by the same tester on both occasions, a Pearson coefficient of .887 was obtained. To determine examiner effect on 24hour test-retest reliability, the MMSE was given twice, 24 hours apart, by two examiners (Folstein et al., 1975). The Pearson r remained high at .827. When elderly depressed and demented patients were given the MMSE twice, an average of 28 days apart, the product moment correlation coefficient fo r test 1 and test 2 was .98. The MMSE separated the three diagnostic groups (dementia, depressed with cognitive impairment, and affective disorders of depre ssed type) from the normal group. Of a total possible score of 30, the following mean scores were obtained for persons with the three diagnoses: dementia, 9.7; depression with cogniti ve impairment, 19.0; and affective disorder with depression, 25.1 (Folstein et al., 1975). The mean score for normal subjects was 27.6. To determine that these scores were not due to the effects of age, an age-matched group was selected with the same distribution of scores according to diagnosis. The mean initial MMSE score for depressed patients less than 60 years of age was 24.5 and for depressed patients over 65 99

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was 25.7, which were not significantly different. Scores below 20 were found only in dementia and functional psychoses, except for a score of 19 in a patient who had a history of drug abuse (Folstein et al., 1975). Folstein and colleagues (1975) determined c oncurrent validity by correlating the MMSE with the Wechsler Adult Intelligence Scale (W AIS) using normal subjects along with a group of patients with a variety of neurologi cal and psychiatric disorders. On the Verbal IQ portion of the WAIS, the Pearson r was .78. For the Performance IQ portion of the WAIS, the Pearson r was .66. Folstein et al. (1975) concluded that the MMSE separated patients with cognitive impairment from those without cognitive impairment. Dick and colleagues (1984) studied 126 neurological patients with one or more brain lesions using the MMSE and WAIS. A Pears on correlation coefficient of .92 was found in patients tested by the same observer and one of .95 in patients retested by a different observer. The authors also found that there was a relations hip between the total score on the WAIS and the total score on the MMSE with a Spearman rho correlation of .52. Ashford, Kohm, Colliver, Bekian, and Hsu (1989) examined the items on the MMSE using an item characteristic curve analysis with 86 subjects with a clinical diagnosis of possible or probable AD. Results of the analysis indica ted a progression of the de velopment of symptoms of AD related to the decline in mental functi on. The earliest loss was recent memory items on the MMSE (score of 20 or above). Items relate d to time and place orientation and those items requiring more cues for acquisition become impaired in the middle category of severity (MMSE greater than 10 and less than 20) Those items requiring the use of the more solidly stored memories, such as the repeating of simple wo rds and following simple commands, are lost in later stages of AD (MMSE of 10 or less). 100

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Ashford and colleagues (1989) compared the re sults between the repeating the names of three objects and recalling them later. Those with mild to moderate impairment could repeat the three words (87%, 84%, 86% correct respectively), but only a few of the patients were able to recall the words later (24%, 9%, and 16% correct, respectively). The investigators concluded that the pattern of performance loss on the MMS E was consistent with the observed clinical observation of AD. According to Ashford and colleagues (1989), the MMSE has two weaknesses. First, the MMSE is not an adequate test to distinguish be tween normal subjects and those with very mild AD. The second weakness is that the score reaches zero at a stage in the disease after which the person with AD may continue to deteriorate for several years. At this phase, the cognitive functioning of the person with AD becomes unstable. The MMSE is a reliable and valid instrument for use in measuring cognitive function (Ashford, Kolm, Colliver, Bekian, & Hsu, 1989). Data Management A data codebook was developed for each inst rument. Each subject was assigned an identification number in order to ensure that the principal investigator could attribute data to the correct participant. Only the subject iden tification number was us ed on all study related materials. Carefully inspecting completeness a nd clarity of each quest ionnaire was performed immediately after the survey was completed. Su bjects were offered the opportunity to complete any missed items. The SPSS statistical software program (versi on 15.0 for Windows) was used for storing the data base file, analyzing the data, and computing the statistical tests in this study (SPSS, 2004). This statistical program was selected becau se it is a standard program for statistical analysis. In this study, the data cleaning, desc riptions of the sample and study variables, 101

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assessment of outliers and multicollinearity, and evaluation of the reliabilities of the measurements were performed. The questionnaires were independently double coded and their differences were reconciled. The principal investig ator double-checked 15% of data, if the error ra te was greater than 3% then all data were double-checked. Th e data was entered and checked for errors and outliers by double keying the data with a separate editing program. Skipped items on the questionnaires were identi fied, and decisions were made in order to recode for missing data. When missing values were reasonably random and the extent of the problem was not large, the investigator pe rformed a mean substitution. If an item on a questionnaire is truly missing, the following rules we re used to impute a total score for that item: (a) if greater than 25% of the items were missing, the score for the questionnaire was missing; (b) if less than 25% of the item scores were missing, and the total score for the questionnaire was represented as a mean, then the mean of the presen t items were used for the total score; and (c) if less than 25% of the item scores were missing, and the total score for the questionnaire was represented as a sum, then the average for the completed items were multiplied by the total number of items to get a prorated score. The investigator used a com puter program to construct fr equency distributions on all variables in order to inspect out liers and missing data. After al l the errors and discrepancies were corrected and validity checks were comp leted, the edited records were stored on an SPSS master file for data analysis. All missing data points were identified to determine whether the information could be obtained a nd entered into the data file. Plan for Data Analysis Univariate. Univariate analysis was calculated fo r each variable in the data set, separately. Next, the measures fo r central tendency were computed. The central tendency is the 102

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statistical measure that identifie s a single score as representative of an entire distribution of scores (Polit, 1996). Central tendency finds the single score that is mo st typical or most representative of the entire di stribution. There are three main measures of central tendency: mean and weighted mean, median, and mode. A mean was used for variables that are normally distributed, a median for categor ical data, and a mode for nominal data (Polit, 1996). After computing the central tendency, the shape of th e distribution was examined for symmetric or skewed distributions. Lastly, the measures of dispersion were ex amined. The measures of dispersion are important for describing the spread of the data or its variation around a central value (Polit, 1996). The measures of dispersion describe th e amount of heterogeneity or variety within distribution scores. The range, standard deviation, and variance were computed to examine the measures of dispersion. The range is the differen ce between the highest and lowest values in an ordered distribution of the values of a variable and the standard deviation is a measure of the average difference of each observation in a di stribution from the average (mean) of the distribution (Polit, 1996). The variance is an expr ession of the total amount of variability of the observations for a variable. Af ter computing the measures of dispersion, the shape of the distribution was examined for symmet ric or skewed distributions. Bivariate. After examining the univariate frequenc y distribution of the values of each variable separately, the bivariat e distribution was computed. Th e bivariate distribution is the joint occurrence and distribution of the values of the independent and dependent variable together. The differences between the high a nd low stressed caregivers were examined by contingency tables, cross tabula tions, and correlations. 103

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The difference between high stressed caregivers, sleep fragmentation, and daytime sleepiness was examined by correlation (Table 3-2) Correlation is a central measure within the general linear model of statistics (Polit, 1996). In order to complete a correlation, the data must be interval. There are three assumptions that must be met when using correlations. First, is the assumption of normality which requires that the distribution of both variables approximates the normal distribution and is not skewed in either the positive or negative direction. Second, it is assumed that the x-y scattergraph points for th e two variables being correlated can be better described by a straight line than by any curvi linear function. Linearity was checked visually by plotting the data. Third, it is assumed that the error variance is to be the same at any point along the linear relationship (Polit, 1996). Descriptiv e statistics, Levenes test, and the Pearsons r was reported. Regression. Regression analysis is a statistical to ol for evaluating the relationship of one or more independent variables to a single contin uous dependent variable (Polit, 1996). Multiple regression allows researchers to improve their predictive power by using two or more independent variables to predict a dependent vari able (Polit, 1996). Multip le regression analysis was used to test the hypothesized path model. The multiple regression model was run, check ed for outliers and multicollinearity, and then the assumptions were tested. The first as sumption that was examined was the linearity of the relationship between the dependent and inde pendent variables (Polit, 1996). Next, the constant variance of the error terms and the nor mality of the error te rm distribution were examined. Lastly, the independence of the error te rms was examined (Polit, 1996). If any of the assumptions were violated, transformations were considered. If any variables were transformed, 104

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the model was re-run. Lastly, the final model was interpreted using the R2, F -ratio, and the betas (Polit, 1996). Test for moderating effect. Moderator is an independent variable that affects the strength and/or direction of the association between another independe nt variable and an outcome variable (Bennett, 2000). Figure 3-2 il lustrates the moderator effect. The moderator interacts with the independent vari able of interest so that the i ndependent variables association with the outcome variable is stronger or weaker at different levels of the moderator variable (Bennett, 2000). The association of the indepe ndent variable with the outcome variable does depend on the value (or level) of the m oderator variable (C ohen & Cohen, 1983). After the data was collected, it was then an alyzed. The steps invol ved in analyzing the moderator data included creating or transforming predictor and moderator variables (e.g., coding categorical variables, centering or standardizing continuous vari ables, or both), creating product terms, and structuring the equation (Frazier, Tix, & Barron, 2004). If either the predictor or moderator variable was categorical, the first step was to represent this variable with code variables. The next step in formulating the regressi on equation involves cente ring the predictor and moderator variables that are measured on a c ontinuous scale (Frazier et al., 2004). These variables were centered (i.e., put into deviation units by subtra cting their sample means to produce revised sample means of zero). This is because the predictor and moderator variables generally are highly correlated w ith the interaction terms created from them. Centering reduces problems associated with multicollinearity among the variables in the regression equation (Baron & Kenny, 1986; Cohen, Cohen, West, & Aiken, 2003). 105

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After product terms were centered, everything was in place to structure a hierarchical multiple regression equation using standard stat istical software, SPSS, to test for moderator effects. The variables were en tered into the regression equati on through a series of specified blocks or steps (Baron & Kenny, 1986; Cohen et al., 2003). The first st ep included the code variables and centered variables representing th e predictor and modera tor variables. All individual variables contained in the interacti on term were entered into the regression equation after the predictor and modera tor variables from which they were created (Baron & Kenny, 1986; Cohen et al., 2003). Next, the results of the hierarchical multiple regression analyses were interpreted by (a) interpreting the effects of the predictor and mo derator variables, (b) testing the significance of the moderator effect, and (c) plotting significant moderator effects. Th e unstandardized (B) was reported when interpreting the eff ects of the predictor and moderato r variables. If the moderator effect was significant, one then tested the statis tical significance of the slopes of the simple regression lines. The slopes of the simple regression lines represent the relations between the predictor and the outcome at specific values of the moderator variable (Baron & Kenny, 1986; Cohen et al., 2003). Confidence intervals for th e simple slopes was also calculated (Baron & Kenny, 1986). Test for mediating effect. A mediator is a variable that specifies how the association occurs between an independent variable and an outcome variable (Bennett, 2000). A mediator effect is only tested when there is a significant di rect effect between the independent variable and the outcome variable (Bennett, 2000). A mediat or effect, shown in Figure 3-3, exists if the following conditions are met (a) vari ations in the independent variable predict variations in the mediator variable, (b) variations in the mediator variable pred ict variations in the outcome 106

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variable, and (c) when associa tions in (a) and (b) are controlled in the model, the direct relationship between the independe nt variable and the outcome va riable becomes nonsignificant (Baron & Kenny, 1986). After the data was collected, it was then an alyzed. The steps invol ved in analyzing the mediator data included four steps (performed with three regression equa tions): (a) show that there is a significant relation between the pr edictor and the outcome (Figure 3-3, Path c) (b) show that the predictor is related to the me diator (Figure 3-3, Path a), (c) show that the mediator is related to the outcome variable (Figur e 3-3, Path b), and (d) show that the strength of the relation between the predictor and the outcome is significantly reduced when the mediator is added to the model (Figure 3-3, Path a, b, & c) (Baron & Kenny, 1986). If the relation between the predictor and the outcome controlling for the mediator was zero, the data were consistent with a complete mediation model (i.e., the mediator completely accounts for the relation between the predicto r and outcome) (Baron & Kenny, 1986). If the relation between the predictor a nd the outcome was significantly sm aller when the mediator was in the equation (Path a, b, & c), but still greate r than zero, the data suggest partial mediation (Baron & Kenny, 1986). However, it is not enou gh to show that the relation between the predictor and outcome is smaller or no longer is significant when the mediator is added to the model. The method described by Kenny and colleagues (1998) to test signifi cance of mediated effect is as follows: Because the difference betw een the total effect of the predictor on the outcome (Figure 3-3, Path c) and the direct effect of the predic tor on the outcome (Figure 3-3, Path a, b, & c) is equal to the product of the path s from the predictor to the mediator (Figure 3-3, Path a) and from the mediator to the outcom e (Figure 3-3, Path b), the significance of the 107

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difference between Paths c and a, b, and c can be assessed by testing th e significance of the products of Paths a and b. Specifi cally, the products of Paths a and b is divided by a standard error term. The mediated effect di vided by its standard error yields a z score of the mediated effect. If the z score is greater than 1.96, the effect is significant at the .05 le vel. The error term used by Kenny and colleagues (Baron & Kenny, 1986; Kenny, Kashy, & Bolger, 1998) is the square root of b2sa2 + a2sb2 + sa2sb2, where a and b are unstandardized re gression coefficients and sa and sb are their standard errors. Procedures Recruitment Potential subjects received an invitation to pa rticipate through mailings or from staff from caregiver support organizations. Caregivers we re recruited th rough caregiver support programs, USF Memory Disorder Clinic, newspaper articl es, and health care provider offices. Anyone interested in participating was in structed to call principal investig ator. The total sample size was 30 subjects. Subjects were recruited once the University of Florida (UF) and the University of South Florida (USF) Health Science Center (HSC) Institutional Review Boards (IRB) provided the principal investigator with written approval. Subjects were recruited through the caregiver support groups and mailings to caregivers through organizations. Potential subjects received a flyer with information about the study and intere sted individuals were instructed to call the principal investigators o ffice for more information. Individuals who called were sc reened for inclusion/exclusio n criteria. For those who were eligible, an appointment was scheduled to review the study protocols and sign the informed consent. The appointment was either done in the office at the USF College of Nursing, USF 108

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Memory Disorders Clinic, or at the subjects home. For consented subjects, data collection began at this appointment. Data Collection At the initial visit, the principal investigator screened the potential subject for inclusion in the study with the criteria for the caregiver and the person with AD. At the initial visit, the caregiver and investigator discus sed the consent form. If the caregiver signed the consent form, this indicated agreement to par ticipate in the study. One copy of the consent form was kept by the caregiver and the other copy was ke pt by the principal investigator. The caregiver was then asked to complete the Demographic Questionnaire. If the caregiver and care recipient agreed, the principal investigator administered the MMSE to the care recipient. The study instruments were assembled into a pa cket in the specified order as noted above to control for testing/instrumentation effects a nd to help the subject understand and answer the material easily. Self-care behavior questions were placed in the first part of the packet and more sensitive questions, such as demographic data, was placed in the last part of the packet. The principal investigator collected the completed questionnaires and answered any questions for the caregiver at the end of the initial visit. Next, the principal investigat or discussed the Actiwatch-L with the caregiver. The Actiwatch-L was worn on the non-dominant wrist as r ecommended by manufacturer. This is a wristwatch-sized device that continually record s activity and light for a 7-day period with a 30second epoch. The caregiver was only to remove the Actiwatch-L, when it could be soaked with water such as bathing and washing the dishes. After discussing the Actiwatch-L with the caregiver, the prin cipal investigator discussed the sleep diary. The sleep diary was completed for each day of actigraphic data collection, which 109

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provided subjective estimates of various sleep-wake parameters, including sleep onset latency, number of awakenings during the night, first wake time after sleep onset, time spent awake after initial sleep onset until last awak ening, total sleep time, and sleep efficiency (K. L. Lichstein et al., 2003). Following the explanation of the sleep diary, the principal investigator discussed the saliva collection procedure. The participant was provided a salivary cortisol kit and was instructed to engage in the co llection procedure on Days 3 and 4. The collection kit consisted of (a) 8 polypropylene 50 mL tubes pr e-labeled with the date and tim e of each scheduled collection, (b) a permanent marker, (c) a specimen transp ort bag with a biohaza rd symbol, and (d) a brochure detailing instructions fo r collecting the salivary cortisol specimens. Specifically, the participant was asked to provi de 4 saliva samples on Days 3 and 4. The participant was instructed to collect samp les upon awakening, 30 minutes af ter awakening, 1100, and 1700 hours on each day. The subject was asked to abstai n from eating, smoking, or drinking for 30 minutes prior to obtaining the specimen. At the appropriate time, the participant sw allowed to dry the m outh and then took one polypropylene tube from the collection kit; a nd provided a nonstimulated saliva sample. Participants were instructed to re frigerate all samples they collected. On Day 7, the samples were collected from pa rticipants and were transferred to the USF College of Public Health Biobehavioral Nurs ing Laboratory. Once transferred, samples were pipetted into microcentrifuge tubes (Fisher Scie ntific) and then centrifuged at 3000 R.P.M. for 15 minutes. They were then pipetted into Fisher brand siliconized/low re tention microcentrifuge tubes (Fisher Scientific), and stored in the -80 C freezer in the College of Public Health Biobehavioral Nursing Laboratory until assayed. 110

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Saliva was assayed under the supervision of Dr. Maureen Groer using a High Sensitivity Salivary Cortisol Enzyme Immunoassay Kit from Salimetrics, Inc. (State College, PA) according to kit instructions (Salimetrics Inc 96-Well Kit) The intra-assay coefficient of variation was calculated and it was 8% which is within range. A reasonable target for the percentage of coefficient variation is less than 10% (Murray, Peter, & Te claw, 1993; Reed, Lynn, & Meade, 2002; Seronie-Vivien et al ., 2005). The intra-assay coefficient of variation is calculated within the samples on the same plate. The inter-assay coe fficient of variation was not calculated due to cost of the ELISA assay kits. The inter-assay correlation of variation is calculated between duplicate samples that are run on di fferent days. Cortisol values were examined for outliers and any raw data that fell outside the physiol ogical range (0.01-2.54g/ dl) was excluded from analyses. For the salivary IgA, the principal investigator used the High Sensitivity Salivary Secretory IgA Indirect Enzyme Immunoassay Kit from Salimetrics, Inc. (State College, PA) according to kit instructions (Salimetrics Inc., 96well kit). Intra-assay coefficients of variation, inter-assay values, and assay sens itivity were calculated. IgA va lues were examined for outliers and any raw data that fell outside the phys iological range was excluded from analyses. On Day 7, the investigator visi ted the subject, had the subj ect complete the series of instruments, and collected the Actiwatch-L, sleep diary and saliva specimens which were transported in a temperature controlled container back to the lab and then stored as mentioned above. If the principal investig ator was unable to administer th e MMSE to the care recipient on the initial visit, it was then administered on Day 7. Finally, maintaining high quality data (e.g., the extent of item non-response and missing scale scores) is an important issue in any h ealth science research because it reflects the 111

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respondents understanding and acceptance of the survey (McHorney, Ware, Lu, & Sherbourne, 1994). Data quality is defined as the completeness of data and score reliability. The investigator inspected each survey questionnaire to see whet her it was completely filled out. The principal investigator telephoned those subj ects who did not answer the quest ions completely the first time in order to obtain more complete questionnaires. Data Confidentiality and Integrity All data was identified by a subject iden tification number only. The key between the subject name and the identification number was kept in a password protected Access database which is housed at the USF College of Nursing in a protected mainframe space. Data collected electronically was collected on a computer that required password access and was collected into a password protected file. Actiwatch-L data was stored in the mainframe computer (this computer is backed up to tape on a 24-hour basis) Sleep diaries were id entified only by number and these were stored in a locked file cabinet in the investigators office at the USF College of Nursing. Protection of Human Rights The study was approved by both the USF HSC Institutional Review Board and the UF Institutional Review Board. The principal investigator recruited subjects in Tampa, Florida. Assurances of confidentiality and freedom to discontinue participation at any time were explained to each subject. The nature of the study and his/her involvement was explained to each potential subject and written consent was obtained. The subjects were told that if they had any concerns or questions before, during, or after completion of the study, the principal investigator was available to answer those questions. The subjects could terminate at any time if they b ecame uncomfortable while answering the questions 112

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113 or collecting the saliva samples. Subjects were notified that their name (s) would not appear on the questionnaires, and they could leave blank any questions that made them feel uncomfortable. The principal investigator assigned an iden tification number to each subject, and these numbers were written on the questionnaires a nd saliva samples, data coding sheets, and computer files. All completed questionnaires, data coding sheets, and computer files were kept in a locked file cabinet in the principal investig ators office. The data was only accessible to the principal investigator and her c onsultants. The results of the study were analyzed and reported only as a group, and no individual was identified. The forms of data storage devices included disk and paper/raw data, and these data were stored in the principal investigators office and will be stored for at least 5 years.

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Weight 16 grams Size: 28X27 Non-Volatile Memory: 64 Kbytes Lux Range: 0.1 to 150,000 Battery Life: 180 days Figure 3-1. Mini Mitter ActiWatch-L (From ActiWatch-L Actograph, 2005) 114

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Outcome Variable Fragmented Sleep c b Moderator Caregiver worried about sleeping through nighttime activit y Predictor X Moderator Predictor High stressed caregivers a Figure 3-2. Moderator model (ada pted from Berry and Kenny, 1986) 115

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Mediator Fragmented Sleep Figure 3-3. Mediator model (ada pted from Berry and Kenny, 1986) Outcome Variable Salivary Cortisol & Salivary IgA a b Independent Variable PSS (high & low level stress) c 116

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117 Table 3-1. Measures Measures Day 1 Day 2 Day 3 Day 4 Day 5 Day 6 Day 7 Demographic questionnaire X ESS X PSQI X Caregiver nighttime worry scale X ACS X NPI-Q X PSS X CES-D X Sleep diary X X X X X X X MMSE X Salivary cortisol X X X Salivary IgA X X X

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Table 3-2. Data analysis 118 Research aim/hypothesis IV & DV Statistical Test Hypothesis 1 : Caregivers with higher levels of stress will have more sleep fragmentati on (lower sleep efficiency and higher number of awaken ings) and more daytime sleepiness. IV: High & low stress (PSS) DV: Actigraphic variables & Caregiver sleep log variables (SEa & SEs) Correlation Hypothesis 2a: Caregivers with higher levels of stress will have more abnormal daytime salivary cortisol levels. IV: Caregivers with higher levels of stress (PSS) DV: Salivary cor tisol measures Correlation Hypothesis 3a: Caregivers with higher levels of stress will have decreased salivary IgA levels. IV: Caregivers with higher levels of stress (PSS) DV: Salivary IgA measures Correlation Hypothesis 4a: The relationship between high stressed caregivers and fragme nted sleep will be moderated by worrying about sleeping through nighttime activity. IV: Caregivers with higher levels of stress (PSS), Moderator: Caregiver nighttime worry scale DV: SEa & SEs Multiple Regression using Berry & Kenny Method Hypothesis 4b: Fragmented sleep will mediate the relationship between level of caregiver stress and daytime salivary cortisol levels. IV: High & low stress (PSS) Mediator: Fragmented sleep (SEa & SEs) DV: Salivary cor tisol measures Hypothesis 4c: Fragmented sleep will mediate the relationship between level of caregiver stress and salivary IgA levels. IV: High & low stress (PSS) Mediator: Fragmented sleep (SEa & SEs) DV: Salivary IgA measures

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CHAPTER 4 RESULTS The purpose of the proposed study was to expl ore sleep patterns in high and low stressed caregivers of cognitively impaired community-d welling individuals who worry about nighttime activity and to explore the proposed link be tween stress of caregiving role and the physiologic/psychologic changes that occur in caregivers with high and low levels of stress that worry about nighttime activity. In this chapter, descriptive statistics regarding the caregivers characteristics, care recipients characteristics, and the major study variables are presented, along with studys results and a di scussion of the findings. Description of the Sample (Caregivers) The sample consisted of caregivers of cognitively impaired community-dwelling individuals. The sample for the study was obtained from the USF Memory Disorders Clinic in Tampa, Florida. The diagnosis of probable demen tia was made by a psychiat rist at the clinic. The investigator met weekly at the clinic during their staffing meeting. At the staffing meeting, the psychiatrist, social worker, and radiologist discussed their fi ndings of a probable diagnosis of dementia. At the staffing meeting, either the psychiatrist or social worker, recommended caregivers who met the criteria fo r the study. The social worker would contact the caregiver and explain the study. If the caregiver was interested in the study, the investigator contacted the potential subject. There were a total of 38 who me t all criteria for inclusion in the study. Out of 38, a total of 31 agreed to participate in th e study (93%) with 7 caregivers re fusing to participate (7%). The 7 caregivers who refused to partic ipate gave reasons for refusal such as they did not have the time, they had too many other problems to deal with, or it was not the right time for the person with the diagnosis of dementia. 119

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Of the 31 who were visited, 30 completed the entire process, which included wearing the actigraphy watch, completing the sleep diary, coll ecting 2 days of saliva, and completing the packet of instruments. Only one caregiver was dropped from the study. The daughter of the caregiver contacted the i nvestigator and asked that her moth er be dropped from the study. The daughter felt her mother was not physically capable of completing the study. The investigator traveled an average of 20 miles to interview ea ch caregiver and then another 20 miles to obtain the Actiwatch-L and saliva specimens. It was a range of approximately 10 miles up to 120 miles with the majority of the subjects living in an urban/suburban set ting. There were only two subjects who lived in a rural setting. During the home visit, the caregiver was aske d if he/she wanted the investigator to telephone during the 7 days of keep ing the sleep diary and the 2 da ys of saliva collection. Only 2 caregivers asked to be telephoned on the first day of saliva colle ction. The others who did not want to be telephoned were encouraged to call the investigator if there we re any questions and/or concerns. There were no major problems indi cated by the caregivers when the investigator telephoned. The caregivers were concerned about the saliva colle ction and wanted to ensure that the collection was valid. Twenty-nine caregivers completed the sleep diary, wore the Actiwatch-L, collected saliva, and completed the packet of instruments. One caregiver was unable to locate the saliva that he stored in the refrigerat or and his folder that contained the sleep diaries. The caregiver stated, (my wife) has a habit of moving my items and misplacing them. I collected the saliva on Days 3 and 4, but two days later I noticed they were no longer in the refrigerator. The folder containing the sleep diaries and the saliva speci mens were misplaced by the care recipient. 120

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The characteristics of the 30 caregivers are summarized in Table 4-1. The age of the caregivers ranged from 26 to 85, with a mean of 65.7 (median=70.5, SD =15.7) years of age. Of this sample, 22 were female and 8 were male. As expected, the sample contained significantly more female caregivers than male caregivers. The majority of the caregivers were white (n=30, 86.7%), with four being Latino. As for educa tion, 70% of the caregiver s had at least some college education. Eighty-three (83.3%) subjects were marrie d, and 66.7% were spouses. Sixty-three (63.3%) caregivers were retired and 23.4% reporte d full-time paid work. These characteristics are consistent with other studies, which show that the majority of caregivers are spousal caregivers (Kiecolt-Glaser et al., 2003; McKibbin et al., 2005; Sherwood et al., 2005). The caregivers reported from 0 to 200 minutes of tim e spent awake per night caregiving. In addition, there were 3 subjects who used sleep medication (Ambien CRTM and RozeremTM) on 2 nights out of the 7-day study. Description of the Care Recipients The majority of the care recipients were female (53.3%), white (90%), and married (83%). The age of care recipients ranged from 60 to 93 years. The majority of care recipients were diagnosed with probable AD (70%) and nine care recipients (30%) were diagnosed with vascular dementia. Table 4-2 shows the breakdo wn of characteristics of care recipient by sex, race, marital status, and dementia diagnosis. The MMSE was also administered to the care recipient. It is a brief cognitive screening measure which is divided into two sections, ve rbal responses and ability to name and follow verbal and written commands. The range of test scores is between 0 and 30. Lower scores are indicative of higher the cognitive impairment (F olstein et al., 1975). The mean of the MMSE was 15.5 (SD =6.97). Eight care recipients (26.5%) scored between 21 and 30, twelve (39.9%) 121

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between 11 and 20 and six (23.1%) between 0 and 10. The care recipients in this study displayed mild to severe cognitive impairment. Tabl e 4-2 displays the breakdown of the MMSE. Description of Study Variables There were nine instruments used for measur ing the variables of interest which included the following: Perceived Stress Scale (PSS), Care giver Nighttime Worry Scale, General Health Question, Epworth Sleep Scale (ESS), sleep diary, actigraphy, salivary cortis ol, salivary IgA, and MMSE (Table 4-3). There was some missing data There were 3 subjects who were missing 1 of the 7-day of the sleep diary, 2 subjects w ho were missing 2 days of sleep diary, and one subject missing all 7-day of the sleep diary. The subject missing all 7 days of the sleep diary was excluded from the analyses when the sleep diary was required. A mean of the available days was created for the subjects who were missing 1 or 2 days of the 7day of the sleep diary and was utilized for the analyses when the sleep diary was required. There were a total of 8 saliva specimens fo r each subject. The salivary cortisol and salivary IgA results were analyzed from these 8 saliva specimens. The saliva specimens were collected at four time points : upon awakening, 30 minutes afte r awakening, 11:00 a.m. and 5:00 p.m. on Days 3 and 4 out of the 7-day study period. There were 11 subjects who had all eight saliva specimens. One subject was missing all 8 specimens and was excluded from the analyses when the salivary cortisol and IgA specimens were required. There were three subjects missing 7 specimens, three subjects missing 6, one subj ect missing 4 specimens, three subjects missing 2, one subject missing 3, and 6 subjects missing one. For the area under curve mean salivary cortisol in respect to ground an alyses the subject was required to have 3 out of the 4 salivary cortisol specimens on Days 3 and 4. The subj ect was also required to have upon awakening salivary cortisol specimen. If the subject was missing the upon awakening specimen or less than 3 out of the 4 specimens, this subject was ex cluded from the area under curve mean salivary 122

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cortisol analyses. For the mean total IgA analys es, the subject was required to have at least one salivary IgA specimen. Salivary Cortisol and IgA Calculation Daily total cortisol concentration was estim ated by calculating the area under the curve (AUC) formed by the 4 measured salivary cortisol levels on Days 3 and 4 of the 7-day period using the trapezoid formula (Schmidt-Reinwald et al., 1999). The comput ation of the AUC is a frequently used method in endocrinological re search and the neurosciences to comprise information that is contained in repeated measurements over time (Pruessner, Kirschbaum, Meinlschmid, & Hellhammer, 2003). The AUC in e ndocrinological studies is used to estimate ultradian and circadian changes of hormones and to assess the overall secretion over a specific time period. The computation of the AUC allows the researcher to si mplify the statistical analysis and increase the power of the testing without sacrificing the in formation contained in multiple measurements (Pruessner et al., 2003). This approach also reduces the number of statistical comparisons between groups, which minimizes the need for adjustment of the significance level. With AUC, the number of statistical comparisons only depends on the number of groups to be compared, as opposed to the original repeated data. In addition, when the time interval between repeated measurements is not identic al, the use of AUC provides an alternative because repeated measures analysis of variance, using the original data, has no proven method to adjust for these differences (Pruessner et al., 2003). AUC was chosen because this study has a time interval between the repeated measurements that are not identical (Upon awakening, 30 minutes after awaken ing, 1100 am, and 500 pm). AUC measure establishes a link between cor tisol levels and ps ychological functioning (Pruessner et al., 2003). The AUC is derived from the trapezoid formula. Two pieces of information are needed in order to calculate the AUC: (a) the measurements themselves and 123

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n-1 AUCG= (m (i+1) +m i )t i i=1 2 (b) the time distance between the measurements (D avis et al., 2004; Pruess ner et al., 2003). The AUC formula takes into account the difference be tween each single measurements (i.e., change over time) and the distance of these measures from the ground, or zero (i.e., the level at which the changes over time occur). Si nce it calculates the area under the curve with respect to ground, it has been named AUCG. AUCG is the total area under the curve of all measurements. It takes into account both sensitivity (the difference betw een the single measurements from each other) and intensity (the distance of these measures from ground). With endocrinological data, AUCG is assumed to be a measure more related to to tal hormonal output (Fekedul egn et al., 2007). This formula is independent of the tota l number of measurements and can be used with any number of repetitions. The AUCG formula is illustrated below: After the AUCG mean cortisol was calculated, a log tr ansformation was then completed. The log transformation was performed in order fo r the data to be distributed normally. Daily total salivary IgA concentration was estimated by calculating the sum for Day 3 and for Day 4. The sum was calculated by adding the values of the salivary IgA specimens for each day; a mean value of the 2 days to tal IgA was used in the analysis. Salivary Cortisol and IgA Area under the curve in respect to ground mean cortisol was calculated for 22 caregivers, because 8 of the caregivers were unable to provi de specimens. Area under th e curve in respect to ground mean cortisol was calculated from the rema ining 22 caregivers. The area under the curve in respect to ground mean cortisol averag e was 273.05 (range 86.23-781.11). Next, mean total IgA will be discussed. The mean total IgA was calculated for 27 caregivers, because 3 of the caregivers were unable to provide specimens. M ean total IgA was calculated from the remaining 124

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27 caregivers. The mean total IgA aver age was 3504.07 (range 1138.24-4808.00). In addition, the drawn sample and the analyzed sample were not significantly different from each other in age, gender, or salivary cortisol and IgA levels (Table 4-7). PSS and CES-D Perceived mental health measures included the CES-D and the PSS. The mean score of CES-D was 13. 6 (SD =10.6) and the mean score of PSS was 24.9 (SD =4.79). Almost 40% of the subjects (n=12, 39.8%) scored 16 or above on the CES-D, which means that those subjects showed signs of probable clinical depression. With regard to stre ss, six subjects reported scores from 20 to 28 with most subjects (n=24, 79.9%) scoring higher than 29. The PSS is designed to measure the degree to which situations in ones life are appraised as stressful (Cohen et al., 1983). The higher the degree and longer the duration of self-per ceived stress, indicated by a higher score, is considered a risk factor for a c linical psychiatric disord er. The Cronbachs alpha for the CES-D was 0.82) and for the PSS it was 0.88, indicating adequate reliability for both instruments. In this study, pe rception of health was measured by a single self-reported heath question. The mean score of the general health questionnaire was 1.73 (SD =1.11). Only 5 caregivers (16.7%) reported their health as excellent and 8 caregivers re ported their health as very good (26.7%). Seven caregivers (23.3%) reported thei r health as good and ten caregivers (33.3%) reported their health as fair. There were no ca regivers (0%) who reported their health as poor. The majority of the caregivers in this study re ported their health as either good or fair. There was one instrument in this study that measured daytime sleepiness, the ESS. The ESS is a brief self-administered retrospective questionnaire of the be havioral aspects of sleepiness to evaluate self-reports of sleep tendency (Johns, 1991). A score of 10 or more is considered sleepy. ESS scores of 16 or higher are indicative of a high level of daytime 125

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sleepiness. The mean score of the ESS was 14.7 (SD =4.7). In this study, 14 caregivers (63.3%) scored from 5 to 15 which indicated a low a leve l of daytime sleepiness. Eleven (36.5%) of the caregivers scored 16 or higher which indicated a high level of daytime sleepiness. The Cronbachs alpha was .75 Sleep Efficiency The sleep diary sleep efficiency was calcula ted from 29 caregivers, because one of the caregivers could not locate his sleep diaries. The sleep diary sleep efficiency was calculated from the remaining 29 caregivers. The sleep diary average sleep efficiency was 82% (range 41.1-98.4). Seventeen caregivers of the 29 (59%) had a sleep efficiency < 85%. Next, actigraphy sleep efficiency will be discussed. One of the actigraphs did not produce results, because the caregiver refused to wear the wa tch continuously. Actigraphical values were calculated from the remaining 29 caregivers. Th e actigraphy average sleep efficiency was 82% (range 53.7-92.7). Sixteen caregivers of the 29 (55%) actigraphically m easured subjects who had sleep efficiency < 85%. The missing data fo r the sleep diaries and actigraphy are reported in Table 4-7. Total Wake Time The sleep diary total wake time was also calc ulated from 29 caregivers, because one of the caregivers could not locate his sleep diaries. Sleep diary total wake time was calculated from the remaining 29 caregivers. The sleep diary av erage total wake time was 92 minutes (range 10304). Next, actigraphy total wake time will be di scussed. One of the actigraphs did not produce results, because the caregiver refused to wear the watch continuously. Actigraphical values were calculated from the remaining 29 caregivers. The actigraphy average total wake time was 54 minutes (range 20.2-136.9). 126

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Caregiver Worry Scale This tool measures the caregivers worry about nighttime activity. The Caregiver Worry Scale was calculated from 30 caregivers. The mean score of the Caregiver Worry Scale was 16.2 (SD =13.2). The range was 0-40 and the Cronbachs alpha was .942. There were 9 caregivers who scored >20 which indicates a high de gree of worry about nighttime activity. Results of Research Questions Specific aim 1: To describe differences in sleep pa tterns between caregivers with high and low levels of stress. o Hypothesis 1a: Caregivers with higher levels of stress will have more sleep fragmentation (lower SEo & SEs) and more daytime sleepiness. The first step was to examine the relationship between caregivers with high and low levels of stress and sleep fr agmentation. There was no signi ficant relationship between caregiving stress as measured by Perceived Stress Scale and sleep fragmentation as measured by sleep diary (r = -.073, p= 354) a nd actigraphy sleep efficiency (r = -.127, p= .256) (Table 4-4). Specific aim 2: To describe daytime salivary cor tisol levels among caregivers with high and low levels of stress. o Hypothesis 2a: Caregivers with higher levels of stress will have more abnormal daytime salivary cortisol levels. There was no significant relationship between caregiving stress and daytime salivary cortisol levels (Table 4-4). Hypothesis 2a was not supported, in that caregiving stress (Perceived Stress Scale) was not significantly correlated with daytime salivary cortisol levels specifically area under curve mean cortisol in respect to gr ound (r = -.094, p=.339). Results indicated that stressed caregivers did not have more abnormal daytime cortisol. 127

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Specific aim 3: To describe IgA levels among caregiv ers with high and low levels of stress. o Hypothesis 3a: Caregivers with higher levels of stress will have decreased salivary IgA levels. There was no significant relationship between caregiving stress (Perceived Stress Scale) and daytime salivary IgA levels (Mean Total Salivary IgA) (Table 4-4). Hypothesis 3a was not supported, in that caregiving stress (Perceived Stress Scale) was not significantly correlated with daytime salivary IgA levels sp ecifically total mean IgA (r = .090, p=.328). Results indicated that caregiving stress was not asso ciated with salivary IgA. Finally, the Caregiver and Ine ffective Sleep model was tested to see if it predicted the relationship between caregivers with high and low levels of stress, fragmented sleep, and caregiver well-being. Testing Assumptions for Multiple Regression In this study, linear regressions were used to test hypotheses 4a, 4b, and 4c (Figure 2-1). In order to appropriate ly estimate the population parameters and test the study hypotheses for statistical significance, an overall analysis for the assumptions of multiple regression was performed (Berry & Feldman, 1985) and is discusse d in this section. The regressions are forms of the general linear model must meet the fo llowing assumptions: independence of the error term, normal distribution of th e error term, homoscadesticit y, and linear relationships. Independent Samples In this study, the sample was independent becau se the data were all collected at one time point and there was no repeated measure of the sa me subject. Therefore, the assumption of an independent sample was not violated. 128

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Normal Distribution The assumption of normality of the dist ribution is determined by examining the frequency of distribution and hist ograms of the residuals of the regression m odel. According to the central limit theorem, when estimation is base d on a large sample, the sample distribution of regression coefficient estimators is a normally distributed regression. As the sample size increases, there is decreasing concern for whet her the normality assumption is met (Polit, 1996; Tabachnick & Fidell, 1996). A sample size greater than 30 is c onsidered sufficient to overcome this violation (Polit, 1996; Tabachnick & Fidell, 1996). In this study, the sample size was small (n=30); therefore, violation of the normality assumption is of concern. This assumption was tested using the residuals of the regression. Linearity Bivariate scatterplots for each IV-DV relati onship were screened. There was no evidence of curvilinear relationships. Residual Analysis for Assu mption of Regression In the regression model, six assumptions rela ted to the residual term were examined to test each hypothesis. These six assumptions are: the residual mean is zero, the residual variance is equal at all points of the pr edicted dependent variable, the re siduals are normally distributed, the residuals indicating the inde pendent variable has a fixed di stribution, the residuals show no evidence of departure from linearity, and the resi duals are independent (Polit, 1996; Tabachnick & Fidell, 1996). The residual by predicted value plots were to evaluate whether the assumption of the regression model for this study were met (Polit, 1996; Tabachnick & Fidell, 1996). In this study, the assumptions for hypothesis 4a, 4b, and 4c (Figure 2-1) were addressed through a single regression equation containi ng all variables. In general, the residual analyses of 129

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hypotheses 4a, 4b, and 4c revealed no violations in the statistical as sumptions. The results of the residual analysis for hypotheses 4a, 4b, and 4c are summarized in the following section. First, the assumption of the residual means was zero which was supported since residual statistics for each regression showed that all re siduals had a mean of zero. Second, the residual variance is equal at all points of the predicted dependent variable. The standardized residuals were plotted against the predicte d dependent values on a scatter pl ots. All the points in the scatter plots appeared to be random. Therefore, residual variance was equally distributed across all levels of the DV. Third, the normality of the residuals was examined by using histograms of residuals and normal probability plots. The histogram of the re siduals revealed a fairly normal, but slightly skewed distribution, while the p-pl ot indicated an approximately nor mal distribution of residuals. The Shapiro-Wilk test was used to test for the normal assumption. It checks the normal assumption by constructing W statistic, which is the ratio of the best es timator of the variance (based on the square of a linear combination of th e order statistics) to the usual corrected sum of squares estimator of the variance (Shapiro & Wil k, 1965). To perform the test, the W statistic is constructed by considering the regression orde red sample values on corresponding expected normal order statistics, which is linear for a sample from a normally distributed population (Royston, 1992). W is positive and less than or equa l to one. Small values of W lead to the rejection of normality, while being close to 1 indicates normality of the data. However, the distribution of W is highly skew ed. The large values of W (W =0.9) may be considered small and lead to the rejection of normality (Royston, 1992). The assumption of normality was met for hypotheses 4a, 4b, and 4c (Figure 2-1). 130

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The fourth assumption is the assumption of independence. The procedure for assessing independence is to examine residual plots. The independence assumption was satisfied and the residuals did fall into a random di splay of points (Polit, 1996). The assumption was not violated because the residuals did not fall into a cyclical pattern. Also the Durbin-Watson statistic was less than 2.6. The fifth assumption is that the residual s hows no evidence of departure from linearity. There was no evidence of nonlin earity in the null plots. The issue of outliers, influential cases, a nd multicollinearity needed to be evaluated before conducting the actual re gression equation for hypotheses 4a, 4b, and 4c. First, studentized residuals should be calculated to identify outliers. Observations with studentized residuals greater than 2 in abso lute value are usually worth furthe r investigation. Three cases had a studentized residuals value of greater than 2, indicating possible outliers (Polit, 1996; Tabachnick & Fidell, 1996). Then the df-betas were calculated to identify whether the outliers had a large influence on the regression line. Df-b etas are valuable dia gnostic statistics for assessing regression models because they dir ectly measure how much each observation affects the realization rate. Observations which affect the realization rate by mo re than a one may be worth investigating. There was no df -betas greater than one, in turn, the investigator kept these cases in the data set for furt her statistical analyses. Finally, multicollinearity among the studys independent variables was examined. Each independent variable was treated individually as a dependent vari able, and all other independent variables were entered simultaneously. In this data set, the condition index was less than 30 and the values for VIF were less than 10 which provided support for no mu lticollinearity (Polit, 1996). 131

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Specific aim 4: To test whether the Caregiver and In effective Sleep model predicts the relationship between caregivers with high and low levels of stress, fragmented sleep, and caregiver well-being. o Hypothesis 4a: The relationship between high stressed caregivers and fragmented sleep will be moderated by worrying about sleeping through nighttime activity. In order to test this hypothes is an interaction term was cr eated from a centered stress variable and a centered worry variable. In the m odel with each predictor and the interaction term, there was no significant relationships between th e predictors or the in teraction term on sleep diary sleep efficiency (F=.171, p=.915). In sum, th e results showed that the relationship between caregiving stress and fragmented sleep was not moderated by worrying about sleeping through nighttime activity. There was also no significan t relationship when actig raphy sleep efficiency was tested with the two predictors and one interaction term (F=.598, p=.623). o Hypothesis #4b: Fragmented sleep will mediate the relationship between level of caregiver stress and daytime salivary cortisol levels. This multiple regression was not performed because the bivariate correlation between caregiver stress and daytime salivary cortisol le vels, area under curve mean cortisol, was not significant (r = -.094, p=.339). o Hypothesis #4c: Fragmented sleep will mediate th e relationship between level of caregiver stress and salivary IgA levels. This multiple regression was not performed because the bivariate correlation between caregiver stress and salivary IgA levels, tota l mean IgA, was not significant (r = .090, p=.328) (Table 4-4). Secondary Analysis Past studies have revealed strong evidence th at there are relationships between sleep and salivary cortisol and IgA measur es (Dadoun et al., 2007; Michaud et al., 2006), but that was not found in the present study. One ratio nale for the different findings in the current study is that the 132

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researcher chose to test the hypot hesized relationships using different measurement intervals for the sleep and salivary measures. The weekly sleep means did not correlate with the 2-day salivary cortisol and IgA measur es. Additionally, duri ng the development of this dissertation, Rowe and colleagues (2007) identified unique findi ngs concerning caregiver sleep. In this study of older adults, the researchers de monstrated that there was significant night-to-night variability across 6 consecutive nights of actigraphic data (Rowe, Campbell, McCrae, & PeBenito, 2007). Intra-individual night-to-night variability is becoming a more widely recognized variable of importance in sleep research (Knutson, Rathouz Yan, Liu, & Lauderdale, 2007; Rowe et al., 2007; Sforza & Haba-Rubio, 2005). Next, the intraindividual night-to-n ight variability in caregiver sleep will be discussed. Past research has provided data that PWD have abnormal, irre gular patterns of nighttime awakening (McCurry et al., 2007; McKibbin et al., 2005). Because of these abnormal, irregular patterns of nighttime behavior in the PWD, the caregivers experience significant night-to-night variability in their sleep (Fauth, Zarit, Femia, Hofer, & Stephens, 2006; Rowe et al., 2007). Caregivers frequently awaken to assess the ca re recipients safety and provide needed care during the night. These frequent awakenings ma y change from night-to-night depending on the needs of the care recipient or the overall fatigue of the caregiver. The importance of studying intra-individual variability in the caregiving a nd dementia setting has also been demonstrated; researchers found that behavioral problems of de mentia and stress levels of caregivers were not stable over a 3-month period (Fauth et al., 2006). In addition, another stu dy of adults between the ages of 38 and 50 examined night-to-night va riability. This was an ancillary study to the Coronary Artery Risk Development in Young Adults (CARDIA) study, an ongoing cohort study of cardiovascular risk. The researchers found that for each of the 4 sleep ch aracteristics (time in 133

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bed, sleep duration, sleep latency, and sleep effici ency), nightly variability was much greater than yearly variability, meaning sleep behavior changes little in one year, despite large daily fluctuations (Knutson et al., 2007) Next, the effects of sleep deprivation on cortisol will be examined. Researchers have found that sleep deprivation re sults in a significant increase in cortisol the next day. Voderholzer and colleagues (2004) demonstrated that 1 night of therapeutic sleep deprivation slightly but signifi cantly increases noctour nal cortisol secreti on. The study also demonstrated that the persons who were sleep de prived exhibited a signifi cant rise of cortisol during the first half of the ne xt day (Voderholzer et al., 2004). In addition, Chapotot and colleagues found that prolonged wakefulness increased plasma cortisol levels at night and on the following daytime phase. They also found that the sleep deprivation-related changes in cortisol release were significantly associ ated with the changes in frontal waking EEG gamma activity (Chapotot, Buguet, Gronfier, & Brandenberger, 2001). Another study also concluded that sleep deprivation results in a significan t reduction of cortisol secretion the next day and this reduction appears to be, to large extent, driven by increase of slow wave sleep during the recovery night (Vgontzas et al., 1999). Sleep disturbance has a stimulatory effect on the HPA axis and a suppressive effect on the GH axis. Their findings support previous hypotheses about the restitution and immunoenhancement role of slow wave (deep) sleep (Vgontzas et al., 1999). It was mentioned earlier that an important parameter of immune status is salivary secretory immunoglobulin A (IgA) Secretory IgA is the main immunological defense of mucosal surfaces and levels measured in saliva are thought to be representative of functional status of the entire mucosal immune system (Mestecky, 1993). Studies have explored the relationship between salivary Ig A and chronic exposure to psychol ogical stress or individuals 134

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particularly prone to stress. Such studies cons istently revealed stress-related down regulation (Evans et al., 1995; Lucas et al., 2007). A nother study found that sleep deprivation causes changes in parameters of serum humoral immunity (IgG, IgA, IgM, C3 and C4) (Hui, Hua, Diandong, & Hong, 2007). The purpose of this study was to investigate the effects of 24 hour sleep deprivation on parameters of humoral immunity. Because the more recent data suggests caregiv er sleep is more variable from night-tonight and sleep deprivation result s in a significant increase in co rtisol the next day, secondary analyses were conducted using the sleep data on nights 2 and 3 and the cortisol and IgA data on Days 3 and 4. On Day 3 (Table 4-5), the ca regivers had increased actigraphy total wake time and decreased actigraphy sleep efficiency (r = -.407, p=.014). The caregivers also had increased actigraphy total wake time and decreased sleep diary sleep efficiency (r = -.387, p=.021). On Day 4 (Table 4-6), the caregivers again had in creased actigraphy total wake time and decreased actigraphy sleep efficiency (r = -.407, p=.014). Once more, th e caregivers had increased actigraphy total wake time and decreased sleep diary sleep efficiency on Day 4 (r = -.360, p = .033). These findings support the sleep re search on the importance of night-to-night variability. In the current study, the caregivers also had abnormal daytime salivary levels. The caregivers had increased cortisol after awakening and decreased actigraphy sleep efficiency (r = -.590, p=.002) on Day 3. 135

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Table 4-1. Description of th e caregiver sample (N=30) Variable N % Mean, (SD) Skewness Age (years) 30 65.7, (15.7) -.702 Gender Female Male 22 8 73.3 26.7 1.112 Race Caucasian Hispanic 26 4 86.7 13.3 2.273 Education Some HS HS graduate Some college College graduate Graduate school 1 8 11 4 6 3.3 26.7 36.7 13.3 20.0 .298 Marital Status Married Previously married 25 5 83.3 16.7 1.884 Employment status Unemployed Employed 24 6 80.0 20.0 -1.580 Relationship to care recipient Spouse Son Daughter Granddaughter Friend 20 1 6 1 2 66.7 3.3 20.0 3.3 6.7 1.609 Nights/Week Caregiving 0 nights 1-2 nights 3-4 nights 5-6 nights Every night 5 6 4 3 12 16.7 20.0 13.3 10.0 40.0 -.266 Times/night caregiving 0 times 1-2 times 3-4 times > 4 times 6 10 13 1 20.0 33.3 43.3 3.3 -.257 # Minutes/night awake caregiving 0-20 21-40 41-80 81-120 121-200 10 5 10 4 2 33.3 16.7 33.3 16.6 6.6 54.78 (52.688) 1.235 136

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Table 4-2. Description of care recipient (n=30) Variables N % Mean, SD Skewness Age (years) 30 78.5, (7.6) -.702 Gender Female Male 16 14 53.3 46.7 .141 Race Caucasian Hispanic 27 3 90.0 10.0 2.809 Marital status Married Previously married 25 5 83.3 16.7 1.884 Dementia diagnosis Dementia Vascular 21 9 70.0 9.0 .920 MMSE 0-10 11-20 21-30 6 12 8 23.3 39.9 26.5 15.2, (6.97) -.686 137

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Table 4-3. Descriptive statistics for major study variables (N=30) Variables n % Mean, SD Possible Range Actual Range Skewness r* PSS 20-30 31-40 41-50 9 19 2 30.0 63.3 6.6 32.3, (4.8) 0-56 20-45 .298 .88 CESD 0 1-15 16-20 >21 4 14 3 8 13.3 46.6 10.0 29.8 13.6, (1.6) 0-60 0-39 .447 .90 Caregiver worry scale 0 1-15 16-30 31-45 46-51 52-65 66-90 5 10 3 4 4 3 6 16.7 33.2 9.9 13.2 13.2 9.9 20.0 36.4, (28.9) 0-90 0-90 .247 .94 General health question 0 1 2 3 4 5 8 7 10 0 16.7 26.7 23.3 33.3 0 1.73, (1.11) 0-4 0-3 -.235 ESS 5-10 11-15 16-20 21-30 5 14 9 2 16.7 46.7 29.9 6.6 14.7, (4.7) 1-48 8-28 .876 .75 138

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Table 4-4. Correlation matrix of major study variables Variable PSS WS SEs SEo AUCGMC TMIgA PSS 1.000 .561** -.073 -.127 -.094 .090 WS .561** 1.000 .054 -.049 -.239 -.151 SEs -.073 .054 1.00 .249 -.104 -.097 SEo -.127 -.049 .249 1.000 .033 -.376* AUCGMC -.094 -.239 -.104 -.033 1.000 .235 TMIgA .090 -.151 -.097 -.376* .235 1.000 Note : PSS=perceived stress scale, WS=worry scale, SEs=sleep efficiency sleep diary, SEo=sleep efficiency actigraphy, AUCGMC=area under curve mean cortisol in respect to ground, TMIgA=Total mean IgA. **Correlation is significan t at 0.01 level. *Correla tion is significant at 0.05 level. Table 4-5. Correlation matrix of secondary analysis Day 3 Variable PSS WS SEs SEo TWTs TWTo CWK AUCGC PSS 1.000 .561** .015 -.180 -.068 .055 -.308 -.010 WS .561** 1.000 .085 -.091 -.094 -.108 -.457** -.188 SEs .015 .085 1.000 .288 -.979** -.387* .167 -.383* SEo -.180 -.091 .288 1.000 -.191 -.407* -.590** .054 TWTs -.068 -.094 -.979** -.191 1.000 .376* .124 .132 TWTo .055 -.108 -.387* -.407* .376* 1.000 -.160 .347 CWK -.308 -.457** .167 -.590** -.160 .124 1.000 -.248 AUCGC -.010 -.188 -.383* .054 .347 .132 -.248 1.000 Note: PSS=perceived stress scale, WS=worry scale, SEs=sleep efficiency sleep diary, SEo=sleep efficiency actigraphy, TWTs=total wake time sleep diary, TWTo=total wake time actigraphy, CWK=cortisol upon awakening, AUCGC=area under curve cortisol in respect to ground. **Correlation is signif icant at 0.01 level. *Correlation is significant at 0.05 level. 139

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Table 4-6. Correlation matrix of secondary analysis Day 4 Variable PSS WS SEs SEo TWTs TWTo CWK AUCGC PSS 1.000 .561** .004 .077 -.021 .014 -.254 -.154 WS .561** 1.000 -.066 .158 .018 -.116 -.124 -.459* SEs .004 -.066 1.000 .200 -.988** -.360* -.221 -.213 SEo .077 .158 .200 1.000 -.234 -.821** -.251 .070 TWTs -.021 .018 -.988** -.234 1.000 .397* .210 .182 TWTo .014 -.116 -.360* -.821** .397* 1.000 .092 .291 CWK -.254 -.124 -.221 -.251 .210 .092 1.000 .039 AUCGC -.154 -.459* -.213 .070 .182 .291 .039 1.000 Note: PSS=perceived stress scale, WS=worry scale, SEs=sleep efficiency sleep diary, SEo=sleep efficiency actigraphy, TWTs=total wake time sleep diary, TWTo=total wake time actigraphy, CWK=cortisol upon awakening, AUCGC=area under curve cortisol in respect to ground. **Correlation is signif icant at 0.01 level. *Correlation is significant at 0.05 level. 140

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Table 4-7. Study variables and missing data Instrument Total number of items Missing items PSS 14 0 Caregiver nightime worry scale 5 0 MMSE 11 4 caregivers missing all 11 items General health question 1 0 ESS 18 1 caregiver missing 1 item CESD 20 1 caregiver missing 1 item Sleep Diary 19 items -7 days of sleep diary 1 caregiver missing days 1 & 2 1 caregiver missing all 7 days Actigraphy 30 actigraphs 1 caregiver was not analyzed Salivary cortisol 8 specimens -4 specimens on Day 3 -4 specimens on Day 4 2 caregivers missing all 8 specimens 2 caregivers missing 7 specimens 1 caregiver missing 5 specimens 2 caregivers missing 6 specimens 1 caregiver missing 4 specimens Salivary IgA 8 specimens -4 specimens on Day 3 -4 specimens on Day 4 2 caregivers missing all 8 specimens 2 caregivers missing 7 specimens 2 caregivers missing 6 specimens 1 caregiver missing 5 specimens 1 caregiver missing 4 specimens 141

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CHAPTER 5 DISCUSSION AND FUTURE RESEARCH This study was a nonexperimental prospective cross-sectional design that explored the sleep patterns in high and low st ressed caregivers and explored th e link between stress of the caregiving role and the physiolo gic/psychologic changes that occur in these high and low stressed caregivers. The discussion first addre sses the primary analyses and then addresses the secondary analyses with considera tion of related research in the l iterature. Lastly, the discussion addresses issues pertaining to the re search design of the study and directions for future research. Discussion The present study investigated the relationshi ps among stress, sleep, salivary cortisol, and salivary IgA among community-dwelling caregive rs. The profile of these community-dwelling caregivers indicates individuals at significant ris k. Almost 40% of the caregivers had elevated levels of depressive symptoms as measured by th e CES-D. This rate of depression is slightly higher than that documented in other family de mentia caregiving studies, where elevated CES-D scores ( 16) have been reported in 25.9% to 38.8% of family caregivers (Baumgarten et al., 1992; Gallant & Connell, 1997; Moritz, Kasl, & Berkman, 1989; Pruchno & Potashnik, 1989; Shanks-McElroy & Strobino, 2001; Williamson & Schul z, 1993). With regard to stress, 79.9% of the caregivers scored higher th an 29 on the PSS. Due to this high score, these caregivers were also at risk for a clinical psyc hiatric disorder. This finding on the PSS is consistent with other studies of caregivers who care for persons with dementia (Ga llagher-Thompson, Shurgot et al., 2006; Kiecolt-Glaser et al., 2003; von Kanel et al., 2006). In addition, the study also collected da ta on the perception of health. It was measured by a single self-reported heath quest ion. There were 16.7% who reporte d their health as excellent, 26.7% as very good, 23.3% as good, and 33.3% reporte d their health as fair. This finding is 142

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significantly higher than the findi ng reported by Creese and colleagues. In their study, most of the caregivers reported good hea lth; 77% rated their phys ical health as good or excellent, while 23% rated their health as fair or poor (Creese et al., 2008). Furthermore, the mean objective and subjective sleep efficiency in this study was 81%, which is below the 85% average sleep effici ency for persons between 45 and 69 years old (Bliwise, 2005). Another aspect of sleep which is extremely impor tant in the older adult is the number of awakenings. The number of awakenings through the night increas es in the older adult as sleep becomes lighter and ra rely enters the deepest stages Lighter sleep with more awakenings is normal in older adults and has no damaging effects on daytime functioning (Bliwise, 2005). In this study however, the reported mean wake time by the caregivers was 92 minutes. The primary analysis tested the hypothesized relationships using weekly sleep means and there was no significant relati onship among perceived stress an d sleep. There was also no significant relationship between pe rceived stress and daytime salivary cortisol and IgA levels using weekly sleep means. The secondary analysis was then completed because more recent data suggests caregiver sleep is more variable from night-to-night like ly indicating that poor nights of sleep are mixed with good nights of sl eep. The secondary analysis found significant results by examining the sleep variables on a ni ghtly basis. On Day 3, the caregivers had increased actigraphy total wake time and decrease d actigraphy sleep efficiency. The caregivers also had increased actigraphy tota l wake time and decreased sleep diary sleep efficiency. On Day 4, the caregivers again had increased ac tigraphy total wake time and decreased actigraphy sleep efficiency. Once more, the caregivers had increased actigraphy total wake time and decreased sleep diary sleep efficiency. 143

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Several aspects of the study may have led to nonsignificant findings. First was the choice of measurements for each of the variables. The pattern of findings related to stress and sleep fragmentation prompts questions regarding why perceived stress wa s not associated with more aspects of sleep fragmentation. It is possible that the PSS did not fully capture the life stress distress that participants were experiencing. Although the P SS has been widely used in studies involving caregivers of persons w ith dementia (Lampley-Dallas, Mold, & Flori, 2005; Li et al., 2007; Macera, Eaker, Jannarone, Davis, & Stoskopf, 1993; Thommessen et al., 2002), the use of this instrument may have limited findings, gi ven that the PSS measur es a rather narrow conceptualization of stress. The PSS is designed to measure the degree to which situations in ones life are appraised as stressf ul during the past month (Cohen et al., 1983). It is important in this population to choose a more comprehensive meas ure of stress, in that it assesses caregivers emotional reactions to specific, relevant life stressors that may have been experienced. It is possible that both reactions to acute and chronic specific life stresso rs should be assessed instead of appraisals of acute, global stress. Therefore, future rese arch should include measures of life event stress in addition to meas ures of percei ved stress. Also the nonsignificant relationship between per ceived stress and cortis ol is perplexing. As mentioned before, it is probabl e that caregivers did not apprai se their situation as demanding. It is also possible that the re lationship between stress and cortisol may have been confounded by other variables. For example, it is possibl e that mood, caregiver bur den, and depression may affect stress and cortisol. Another variable that may have lead to nons ignificant findings was IgA. In this study, IgA was calculated as mean total IgA for Days 3 and 4 out of the 7-day study. The latest research involving stress and salivary IgA suggest calculating IgA as a flow rate (Farran et al., 144

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2001; Kiecolt-Glaser et al., 1984; Lawrence et al., 2005; Yang & Glaser, 2002). According to the research, the unstimulated w hole saliva should be collected ove r a 2to 5-minute period and placed into a polypropylene tube. The saliva volume is then estimated by weighing the polypropylene tube immediately after collection to the nearest mg and saliva density is assumed to be 1.00 g/ml. From this, the saliva flow rate is determined by dividing the volume of saliva by the collection time. In future research, the salivar y IgA should be calculated as a flow rate. The current study is also limited by a small samp le size and the resulti ng lack of power to identify relationships between the variables of interest. The small sample size is not surprising, given that caregivers are stressed and have significant burden. Our sample size was also further limited by the inclusion and exclusion criteria. Such stringent criteria are necessary to ensure internal validity in studies examining the relations between psychological and physiologic variables. These criteria resulted in a smaller samp le of caregivers who met eligibility criteria for recruitment. Finally, the researcher chose to use weekly means to investigate the sleep and daytime salivary cortisol and IgA variables. As mentioned above caregiver sleep is more variable from night-to-night likely indicating that poor nights of sleep are mixed with good nights of sleep. A set of secondary analyses found significant findings in sleep fragmentatio n, salivary cortisol and IgA. Implications for Future Research The data from this pilot study provided a new perspective on the phenomena of caregiving stress, sleep fragmentation, and salivary cortisol and IgA levels. Based on the results of this study, recommendations for future nursing research include the following: Investigate the nature of the relationships among caregiving stress, depression, anxiety, sleep fragmentation, and salivary cortisol a nd IgA levels in caregivers who care for persons with AD by employing different statisti cal analyses, such as structural equation 145

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modeling to tease out the strength of th e effects of the re lationship among study variables. Test Lazarus and Folkmans model by using la rge, diverse samples of caregivers and noncaregiver comparisons to examine further the relationship between caregiving stress, depression, anxiety, sleep frag mentation, and salivary cortisol and IgA levels in caregivers who care for persons with AD. Conduct a longitudinal study to focus on change s in key predictor va riables ( caregiving stress, depression, anxiety, sleep fragmentation) and their relationship to salivary cortisol and IgA levels over time. Conduct a longitudinal study comparing caregivers who were provided education on improving sleep and a control group to explor e the relationships be tween key predictor variables (caregiving stress, depression, anxiety, and sleep fragmentation) and their relationship to salivary co rtisol and IgA levels. Develop a precise measurement tool that accu rately captures the reason for the caregiver getting up at night. This measurement tool will distinguish between the caregiver getting up at night to assist the care recipient and the caregiver getting up at night for other reasons. Obtain IRB approval to collect and compare MMSE data on the care recipient during the physicians visit and at the home. The current pilot study explored the relations hips among stress, sleep, and cortisol and IgA levels among caregivers of persons with demen tia. Contrary to hypothe sis, perceived stress was not related to cortisol, IgA, and sleep when using weekly sleep variables. The findings from the secondary analysis suggest significant re lationships between per ceived stress, cortisol, IgA, and sleep when using nightly sleep variable s. This study provides preliminary data to support future research examining the relationship between psychosocia l factors, sleep, and cortisol and IgA levels among caregiv ers of persons with dementia. Future research is needed to further examine the predictors of cortisol, IgA, and sleep as well as to examine the relationships between cortisol, IgA, and sleep among caregivers of persons with dementia. 146

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APPENDIX A APPRAISAL OF CAREGIVING SCALE Subject_______________________ Date____________________ This group of questions represents feelings, beli efs, or attitudes that someone like you might have about providing care. Please think about your own situat ion in providing care for _________________________ in the future Circle the number that i ndicates how much you agree or disagree with each of the statements listed below. There ar e no right or wrong answers. Strongly Disagree Disagree Neither Agree or Disagree Agree Strongly Agree 1. This situation will make me feel more appreciated by others. 1 2 3 4 5 2. This situation will be stressful for me in the future. 1 2 3 4 5 3. I feel things are going to get worse for me. 1 2 3 4 5 4. I will not be doing very well with this situation in the future. 1 2 3 4 5 5. This situation will affect my independence. 1 2 3 4 5 6. I worry that I will not be able to meet all my responsibilities. 1 2 3 4 5 7. I worry that Ill have to give up a lot of things in the future. 1 2 3 4 5 8. My relationships with friends and family will be affected by this situation. 1 2 3 4 5 9. This situation will affect how I feel about myself. 1 2 3 4 5 10. I am afraid that in the future I will not have the energy and endurance I have now. 1 2 3 4 5 11. I will grow a lot as this situation continues. 1 2 3 4 5 12. There is nothing I can do that will make a difference in how the ______________ feels. 1 2 3 4 5 13. My responsibilities will continue to be what they have always been. 1 2 3 4 5 14. This situation will affect my lifestyle. 1 2 3 4 5 15. This situation will threaten to overwhelm me. 1 2 3 4 5 16. My relationships with others will become closer as this situation continues. 1 2 3 4 5 17. I am afraid my own physical health will begin to suffer. 1 2 3 4 5 147

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Strongly Disagree Disagree Neither Agree or Disagree Agree Strongly Agree 18. This situation will affect my relationship with _____________. 1 2 3 4 5 19. I believe good things will come my way because of how I am handling this situation. 1 2 3 4 5 20. I worry that I will not be able to help ___________ in the future. 1 2 3 4 5 21. I worry that my emotional health will begin to suffer. 1 2 3 4 5 22. Each day will become more meaningful as this situation continues. 1 2 3 4 5 23. I am concerned that this situation will cause financial hardship for me in the future. 1 2 3 4 5 24. I will discover resources I never knew I had. 1 2 3 4 5 25. I am not sure I can handle this situation in the future. 1 2 3 4 5 148

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APPENDIX B CENTER FOR EPIDEMIOLOGIC STUDIES DEPRESSION SCALE Subject______________ Date __________________ Instructions: R: Rarely or none of the time (< 1 day) S: Some or a little of the time (1-2 days) O: Occasionally or a moderate amount of the time (3-4 days) M: Most of the time (5-7 days) For the following 20 items, please select the ch oice that best descri bes how you have felt over the past week 1. I was bothered by things that usually dont bother me. R S O M 2. I did not feel like eating; my appetite was poor. R S O M 3. I felt that I could not shake off the blues even with the help from my family and friends. R S O M 4. I felt that I was not as good as other people. R S O M 5. I had trouble keeping my mind on what I was doing. R S O M 6. I felt depressed. R S O M 7. I felt that everything I did was an effort. R S O M 8. I felt hopeless about the future. R S O M 9. I thought my life had been a failure. R S O M 10. I felt fearful. R S O M 11. My sleep was restless. R S O M 12. I was unhappy. R S O M 13. I talked less than usual. R S O M 14. I felt lonely R S O M 15. People were unfriendly. R S O M 16. I did not enjoy life. R S O M 17. I had crying spells. R S O M 18. I felt sad. R S O M 19. I felt that people disliked me. R S O M 20. I could not get going. R S O M 149

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APPENDIX C EPWORTH SLEEP SCALE Subject # ______________ Date Completed ______________ How likely are you to doze off or fall asleep in the fo llowing situations, in c ontrast to feeling just tired? This refers to your usual way of life during the past 2 weeks Even if you have not done some of these things recently, imagine how th ey would have affected you. Use the following scale to choose the most appropriate number for each situation: 1 = would never doze 2 = slight chance of dozing 3 = moderate chance of dozing 4 = high chance of dozing 1. Sitting and reading _____ 2. Watching TV. _____ 3. Sitting, inactive in a public place (such as a theater or a meeting)... _____ 4. As a passenger in a car for an hour without a break.. _____ 5. Lying down to rest in the afternoon when circumstances permit.. _____ 6. Sitting and talking to someone.. _____ 7. Sitting quietly after lunch without alcohol _____ 8. In a car, while stopped for a few minutes in the traffic. _____ 150

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APPENDIX D MINI MENTAL STATUS EXAM Subject # ____________________ Researcher __________________________ Date __________ Time______________ Instructions: Check items answered correctl y. Write incorrect or unusual answers in space provided. If necessary, urge patien t to complete task. Introduction to patient: I would like to ask you a few questions. Some you will find very easy and others may be very hard. Just do your best. Task Instructions Scoring Max Score Obtained Score Date Orientation "Tell me the date?" Ask for omitted items. One point each for: year season date day of week month 5 Place Orientation "Where are you?" Ask for omitted items. One point each for: state county town building floor or room 5 Register 3 Objects clock, automobile, telephone Name three objects slowly and clearly. Ask the patient to repeat them. One point for each item correctly repeated. 3 Serial Sevens Ask the patient to count backwards from 100 by 7. Stop after five answers. (Or ask them to spell "world" backwards.) One point for each correct answer (or letter) 93-86-79-72-65-58 D-L-R-O-W 5 Recall 3 Objects Ask the patient to recall the objects mentioned above. One point for each item correctly remembered clock, automobile, telephone 3 Naming Point to your watch and ask the patient "what is this?" Repeat with a pencil. One point for each correct answer watch pencil 2 Repeating a Phrase Ask the patient to say "no ifs, ands, or buts." One point if successful on first try 1 Verbal Commands Give the patient a plain piece of paper and say "Take this paper in your right hand, fold it in half, and put it on the floor." One point for each correct paper in right hand, fold it in half, put it on the floor 3 Written Commands Show the patient a piece of paper with "CLOSE YOUR EYES" printed on it. One point if the patient's eyes close 1 151

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Task Instructions Scoring Max Score Obtained Score Writing Ask the patient to write a sentence. One point if sentence has a subject, a verb, and makes sense 1 Drawing Ask the patient to copy a pair of intersecting pentagons onto a piece of paper. One point if the figure has ten corners and two intersecting lines 1 TOTAL (Adapted from Folstein et al., 1975) 152

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APPENDIX E NEUROPSYCHIATRIC INVENTORY QUESTIONNAIRE Neuropsychiatric Inventory Questionnaire Subject _________________ Date ________________________ Please answer the following questions based on changes that have occurred since the patient first began to experience memory problems. Circle "yes" only if the symptom has been present in the PAST MONTH Otherwise, circle "no". For each item marked "yes", rate the severity and distress using the provided scale. Please answer each question honestly and carefully Ask for assistance if you are not sure how to answer any question. Delusions Does the patient believe that others are stealing from him or her, or planning to harm him or her in some way? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Hallucinations Does the patient act as if he or she hears voices? Does he or she talk to people who are not there? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Agitation or aggression Is the patient stubborn and resistive to help from others? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Depression or dysphoria Does the patient act as if he or she is sad or in low spirits? Does he or she cry? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Anxiety Does the patient become upset when separated from you? Does he or she have any other signs of nervousness, such as shortness of breath, sighing, being unable to relax, or feeling excessively tense? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Elation or euphoria Does the patient appear to feel too good or act excessively happy? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 153

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Apathy or indifference Does the patient seem less interested in his or her usual activities and in the activities and plans of others? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Disinhibition Does the patient seem to act impulsively? For example, does the patient talk to strangers as if he or she knows them, or does the patient say things that may hurt people's feelings? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Irritability or lability Is the patient impatient and cranky? Do es he or she have difficulty coping with delays or waiting for planned activities? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Motor disturbance Does the patient engage in repetitive activities, such as pacing around the house, handling buttons, wrapping string, or doing other things repeatedly? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Nighttime behaviors Does the patient awaken you during the night, rise too early in the morning, or take excessive naps during the day? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Appetite and eating Has the patient lost or gained weight, or had a change in the food he or she likes? Yes No Severity: 1 2 3 Distress: 0 1 2 3 4 5 Neuropsychiatric Inventory Questionnaire. Adapte d with permission from Kaufer DI, Cummings JL, Ketchel P, Smith V, MacMillan A, Shelley T, et al. Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory. J Neuropsychiatry Clin Neurosci 2000;12:233-9. Copyright J.L. Cummings, 1994. 154

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APPENDIX F PITTSBURGH SLEEP QUALITY INDEX Subject______________ Date __________________ INSTRUCTIONS: The following questions relate to your usual sleep habits during the past month ONLY. Your answers should indicate the most accurate reply for the majority of days and nights in the past month. Please answer all questions. 1. During the past month, when have you usually gone to bed at night? USUAL BED TIME___________________________ 2. During the past month, how long (in minutes) has it usually taken you to fall asleep each night? NUMBER OF MINUTES_________________________ 3 During the past month, when have you usually gotten up in the morning? USUAL GETTING UP TIME______________________ 4. During the past month, how many hours of actual sleep did you get at night? (This may be different than the number of hours you spend in bed.) HOURS OF SLEEP PER NIGHT___________________ Instructions: For each of the remaining questions, check the one best response. Please answer all questions. 5. During the past month, how often have you had trouble sleeping because you.. Not during the past month Less than once a week Once or twice a week Three or more times a week a. Cannot get to sleep within 30 minutes b. Wake up in the middle of the night or early morning c. Have to get up to use the bathroom d. Cannot breathe comfortably e. Cough or snore loudly f. Feel too cold g. Feel too hot h. Had bad dreams i. Have pain j. Other reason(s), please describe 155

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156 Not during the past month Less than once a week Once or twice a week Three or more times a week How often during the past month have you had trouble sleeping because of this? 6. During the past month, how often have you taken medicine (Prescribed or over the counter) to help you sleep? 7. During the past month, how often have you had trouble staying awake while driving, eating meals, or engaging in social activity? Very good Fairly good Fairly bad Very bad 8. During the past month, how would you rate your sleep quality overall? No problem at all Only a very slight problem Somewhat of a problem A very big problem 9. During the past month, how much of a problem has it been for you to keep up enough enthusiasm to get things done? No bed partner or do not share a room Partner/flat mate in other room Partner in same room, but not same bed Partner in same bed 10. Do you have a bed partner or share a room?

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APPENDIX G SLEEP DIARY Subject # ______________ Day of Diary __________________ Please answer the following questionnaire WHEN YOU AWAKEN IN THE MORNING. Definitions explaining each line of the questionnaire are provided on the front cover of the folder COMPLETE __________________________ MORNING EXAMPLE 1. NAP (yesterday) 70 minutes 2. BEDTIME (last night) 10:55 pm 3. TIME TO FALL ASLEEP 65 minutes 4. # of AWAKENINGS during night 4 5. MINUTES AWAKE during night 110 minutes 6. FINAL WAKE-UP 6:05 am 7. OUT OF BED 7:10 am 8. QUALITY RATING 2 1 = very poor, 2 = poor, 3 = fair, 4 = good, 5 = excellent 9. MEDICATIONS FOR SLEEP (include amount & time) Halcion 0.25 mg 10:40 pm PANA Scale Please indicate the extent to which you have experienced the following emotions by checking the appropriate box: EMOTION Not at all A little Moderately Quite a bit Very much Distressed Excited Strong Scared Irritable Alert Nervous Determined Jittery Active 157

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APPENDIX H CAREGIVER WORRY SCALE Subject # _________________ Date__________________________ Answer each question by placing a vertical mark across the answer line at a point which BEST REFLECTS YOUR OPINION. Example: How worried are you about it raining today? not at all _______________________________________________ my greatest worried worry 1. These questions are about your worry of _____ LEAVING THE HOME AT NIGHT a. How often do you worry about this? not at all _______________________________________________ constantly worry b. How much does worrying about this affect your lif e (distress you)? not at all _______________________________________________ very distressed 2. These questions are about your worry of _______ BE ING UP DURING THE NIGHT WITHOUT YOU KNOWING a How often do you worry about this? not at all _______________________________________________ constantly worry b. How much does worrying about this affect your lif e (distress you)? not at all _______________________________________________ very distressed 3. These questions are about how worried you are that ______ will be INJURED AT NIGHT a. How often do you worry about this? not at all _______________________________________________ constantly worry b. How much does worrying about this affect your lif e (distress you)? not at all _______________________________________________ very distressed 4. These questions are about your worry of ________ possibly GETTING UP LATE AT NIGHT a How often do you worry about this? not at all _______________________________________________ constantly worry b. How much does worrying about this affect your lif e (distress you)? not at all _______________________________________________ very distressed 5. How much does ________s ACTUAL GETTI NG UP AT NIGHT disrupt your sleep? not at all _______________________________________________ a great deal 158

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APPENDIX I PERCEIVED STRESS SCALE Subject_________________________ Date__________________________ INSTRUCTIONS: The questions in this scale ask you about your feelings and thoughts during THE LAST MONTH. In each case, you will be asked to indicate your response by placing an X over the circle representing HOW OFTEN you felt or thought a certain way. Although some of the questions are similar, there are differences between them and you should treat each one as a separate question. The best approach is to answer fairly quickly. That is, dont try to count up the number of times you felt a particular way, but rather indicate the alternative that seems like a reasonable estimate. Never Almost never Sometimes Fairly often Very often 1. In the last month, how often have you been upset because of something that happened unexpectedly? 2. In the last month, how2 often have you felt that you were unable to control the important things in your life? 3. In the last month, how often have you felt nervous and stressed? 4. In the last month, how often have you dealt successfully with day to day problems and annoyances? 5. In the last month, how often have you felt that you were effectively coping with important changes that were occurring in your life? 6. In the last month, how often have you felt confident about your ability to handle your personal problems? 7. In the last month, how often have you felt that things were going your way? 8. In the last month, how often have you found that you could not cope with all the things that you had to do? 9. In the last month, how often have you been able to control irritations in your life? 10. In the last month, how often have you felt that you were on top of things? 159

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160 Never Almost never Sometimes Fairly often Very often 11. In the last month, how often have you been angered because of things that happened that were outside of your control? 12. In the last month, how often have you found yourself thinking about things that you have to accomplish? 13. In the last month, how often have you been able to control the way you spend your time? 14. In the last month, how often have you felt difficulties were piling up so high that you could not overcome them?

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APPENDIX J DEMOGRAPHIC QUESTIONNAIRE Subject # ______________ Date Completed ______________ Caregiver Information Age_____ Gender_____ Race__________ Relationship to Care receiver ____________ Occupation______________________________ Currently working Y/N Education: What is the highe st level you went in school? 1. less than 7 years 2. junior high school (grades 7-9) 3. some high school (grades 10-11) 4. high school graduate 5. some college or technical school 6. college graduate 7. graduate school (masters degree or beyond) Marital status curren tly married_______ never marri ed________ previously married________ Estimate of # of times per night you generally awaken to provide care: 0. never 1. 1-2 x per night 2. 3-4 x per night 3. >4 x per night Estimate of # of nights per week you generally awaken to provide care 0. never 1. 1-2 night per week 2. 3-4 nights per week 3. 5-6 nights per week 4. every night How many minutes per night are you awake ____________ What is the hardest thing to mana ge in the care of your relative 1. manage nighttime problems ___ 2. other ________________________________________________________________ Others living in the home: 1. child 2. adult child 3. caregiver spouse 4. care receiver spouse 5. other relative 6. paid caregivers 7. friends 8. other Others providing care: 1. adult child 2. caregiver spouse 3. care receiver spouse 4. other relative 5. paid caregi vers 6. friends 7. other Other measures used to manage nighttime activity: 1. change locks 2. changed where caregiver sleeps 3. other monitors 4. respite care 5. other 161

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162 Caregiver meds: 1. ______________________________ 2. ______________________________ 3. ______________________________ 4. ______________________________ 5. ______________________________ In the last year how would you rate your general health? Excellent very good good fair poor Dementia Age __________ dementia Gender __________ dementia Race __________ Dementia Diagnosis: 1. dat 2. Lewybody 3. vascular 4. parkinsons 5. mixed 6. not specified 7. other Person with dementia meds: 1. _________________________________ 2. _________________________________ 3. _________________________________ 4. _________________________________ 5. __________________________________

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BIOGRAPHICAL SKETCH Brandy Lee Lehman was born on March 27, 1974 in Steubenville, Ohio. She graduated from Wintersville High School in Wintersville, Ohio in 1992. She earned her B.S. in nursing from Thiel College (1996) and her M.S. in nursing from University of Wisconsin-Milwaukee (2000). Upon graduating in 1996 with her B.S. in nursing, she served in the United States Navy as a commissioned officer in the Nursing Servic e Corps as a Lieutenant J.G. until September 2000. As a Naval Officer, Brandy s past experience ranged from psychiatry, medical-surgical, critical care and ope rating room nursing. After graduating with her M.S. in nursing, Brandy worked at University Community Hospital in Tampa, Florida as an Operating Room Clinical Nurse Specialist. Brandy educated staff, physicians, and patients in the field of operating room nursing. In 2002, Brandy had a burning passion to teach undergraduate nursing st udents. Brandy has been teaching since 2002 at the University of South Florida College of Nursing. In th e past 6 years she has taught medical-surgical nursing, nursing pharmacology, a nd fundamentals of nursing. She has also taught several medical-surgical and fundame ntals of nursing clin ical rotations. Upon completion of her Ph.D. program, Brandy will continue to work as an Assistant Professor at the USF College of Nursing. She pl ans to work with Maureen Groer in the College of Nursing Biobehavioral Laborat ory. Brandy has been married to Lorne Lehman for 8 years and they have four children: Nichol as, age 5; Jessica, age 7; Michael, age 9; and Benjamin, age 9. 195