Identity work in individuals with early Alzheimer's disease

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Identity work in individuals with early Alzheimer's disease
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Table of Contents
    Title Page
        Page i
        Page ii
    Acknowledgement
        Page iii
    Table of Contents
        Page iv
        Page v
    Abstract
        Page vi
        Page vii
    Chapter 1. Introduction
        Page 1
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    Chapter 2. Review of literature
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    Chapter 3. Methodology
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    Chapter 4. Identity work in early ad
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    Chapter 5. Disclosure
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    Chapter 6. Confirmation work
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    Chapter 7. Summary and implications
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    Appendix A. Subject interview guide
        Page 121
    Appendix B. Demographic form
        Page 122
    Appendix C. Functional activities questionnaire
        Page 123
    Appendix D. Physician interview guide
        Page 124
    Appendix E. Consent to participate in research (Patient)
        Page 125
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    Appendix F. Consent to participate in research (Physician)
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    References
        Page 131
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    Biographical sketch
        Page 141
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Full Text










IDENTITY WORK IN INDIVIDUALS WITH EARLY ALZHEIMER'S DISEASE


By

SUSAN LEGER-KRALL










A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA


2001














Copyright 2001


by

Susan Leger-Krall













ACKNOWLEDGMENTS

I owe thanks to many people for their assistance and encouragement in the

completion of this undertaking. First, I thank Bill, my husband and friend, who has

always given his quiet and undivided support to all of my endeavors. I also thank Lillian,

my nmother-in- law, who was the best teacher in how to live with Alzheimr's Disease. I

am also truly grateful to the individuals with EAD who opened up their very private lives

to me and shared their fears and hopes for their future.

I thank my committee members, Dr. Karolyn Godbey, Dr. Claydell Home and Dr.

Jaber Gubrium. I appreciate their continued guidance and input during this lengthy

process. I especially wish to thank Dr. Sally Hutchinson, whose encouragement and

support gave me the confidence to complete this project, and whose especially keen and

scholarly insight offered direction in an uncharted field of discovery.













TABLE OF CONTENTS


ACKNOW LEDGM ENTS .......................................................................... iii

ABSTRACT .............................................................................................. vi

CHAPTERS

INTRODUCTION ............................................................................... 1
Purpose of Study ................................................................................ 3
Significance of the Study for Nursing ................................................. 4

2 REVIEW OF LITERATURE ............................................................. 5
Theoretical Perspective ...................................................................... 5
Perspectives on early AD ................................................................. 7
Self ............................................................................................ 7
Biomedical Focus and AD ........................................................... 9
Sociogenic Focus and AD ........................................................... 11
Early AD Experience ............................................................... 14
Intervention Focus .................................................................... 25
Summary .......................................................................................... 25

3 METHODOLOGY ........................................................................... 27
Research Approach ....................................................................... 27
Setting ............................................................................................. 29
Sample ........................................................................................... 29
Theoretical Sampling ...................................................................... 31
Protection of Human Subjects .......................................................... 32
Data Collection ............................................................................... 35
Data Analysis ................................................................................. 36
Scientific Rigor ................................................................................ 39

4 IDENTITY WORK IN EARLY AD ................................................ 43
Open Awareness Context A Condition for Identity Work .............. 45
Stages of Identity W ork ................................................................... 49
Explanatory W ork .................................................................... 49
Recognition W ork ................................................................... 52
Conditions for Recognition work ...................................... 53
Diagnostic barriers to Recognition work .......................... 61
Social psychological consequences of Recognition work .... 66














Sum m ary .... ... . . ........................................ 68

5 DISCLO SURE ............................................................................ 69
Nondisclosure Maintaining Secrecy to Save Face ................... 71
Selective Disclosure Assistance From Others ......................... 79
Forced Disclosure Increased Disruption and Exposure ........... 83
Sum m ary ..................................................................................... 94

6 CONFIRMATION WORK ..................................................... 96
Accounts of Confirmation Work .............................................. 98
Outcomes of Acceptance and Confirmation ................................. 104
Confirmation Work and Open Awareness Context ...................... 107
Sum m ary ..................................................................................... 110

7 SUMMARY AND IMPLICATIONS .......................................... 111
Sum m ary .................................................................................... 111
Recommendations for Practice .................................................... 113
Recommendations for Research .................................................. 119

8 APPEN D IX ................................................................................. 121
A: SUBJECT INTERVIEW GUIDE .......................................... 121
B: DEMOGRAPHIC FORM ...................................................... 122
C: FUNCTIONAL ACTIVITIES QUESTIONNAIRE ............... 123
D: PHYSICIAN INTERVIEW GUIDE ...................................... 124
E: CONSENT TO PARTICIPATE IN RESEARCH (Patient) ....... 125
F: CONSENT TO PARTICIPATE IN RESEARCH (Physician) ..... 128

9 REFEREN CES ........................................................................... 131

10 BIOGRAPHICAL SKETCH ....................................................... 141













Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

IDENTITY WORK IN INDIVIDUALS WITH EARLY ALZHEIMER'S DISEASE

By

Susan Leger-Krall

December 2001

Chairman: Sally A. Hutchinson
Major Department: Nursing

Persons with early Alzheimer's Disease (EAD) are willing and able to share their

experience of early memory loss (EML) but are rarely asked to participate in the research

process. The focus of this qualitative grounded theory study was an attempt to capture the

experience of memory loss from the perspective of the person with EML. A purposive

convenience sample of 18 participants with early memory loss was interviewed, and data
were transcribed and coded according to Glaser's constant comparative method. The

grounded theory approach allowed for insight into participants' experience as their
awareness of their memory loss developed, and for the identification of the basic social

processes that participants used to deal with their changing self identity. Identity work

emerged as the core process that participants with EML experienced along an EAD
trajectory that included the stages of explanatory work, recognition work, disclosure
work and confirmation work. An Open awareness context, in which the EAD was

discussed, was essential to identity work. Recommendations for practice include

encouraging health professionals to dialogue with the person with EML early in their AD

course, in order to allow the process of identity work to occur. The offering of supportive









services such as EML participant groups for education and group support, and the

inclusion of family members and caregivers in these efforts, should assist people in

moving through the stages of identity work. The substantive theory of Identity work in

EAD should contribute to an improved awareness and sensitivity of nurses and other

health professionals towards persons with EML. Nursing interventions based on the

theory will assist in improving the quality of care to this population.













CHAPTER 1
INTRODUCTION

The pain of the mind is worse than
the pain of the body. Syrus

Dementia is the most common cause of mental impairment in older persons, with

Alzheimer's Disease (AD) accounting for most of the dementia diagnoses (Loreck, Bylsma

& Folstein, 1994; U.S. Department of Health and Human Services, 1996). Dementia is a

syndrome or group of symptoms caused by a specific problem, and Alzheimer's is just one

of the many types of dementia. The recognition of dementia as a major health and social

problem in this country can be traced back to the late 1970s, and is most directly

attributable to an increase in the growth of the elderly population (especially the over 80

age group), and changing family support patterns, particularly the increase in the

employment of the traditional female caregiver (Gilhooly & Birren, 1986; Bould, Sanborn

& Reif 1989; Corcoran, 1993). The perception of AD as a major health problem is due to

the progressive pattern of irreversible and degenerative brain loss seen in the disease,

resulting in loss of cognition, memory and eventually, loss of everyday living skills.

Alzheimer's dementia is the fourth leading cause of death in adults, after heart disease,

cancer and stroke (Alzheimer's Disease Association, 2001).

Burden, devastation, and fear of the future are common descriptors pervasive in

the AD literature, and connote loss and decline for the person and their caregiver

experiencing this problem. These descriptors are similar to those used for many years in

the gerontological literature to describe the aging experience. Gubrium (1986) stated that

1







those working with AD often function from a diagnostic frame of reference, and the

person with AD is viewed as a diseased person. Lyman (1993) shared these concerns,

stating that the major body of knowledge currently available about AD is framed from the

biomedical perspective, with many assumptions about the behavioral problems of people

with dementia. Because of this prevalent view, clinicians and caregivers may begin to

treat the person with AD as ill and incompetent once the diagnosis is made, unable to

focus on the strengths and abilities that can still remain throughout the long course of the

illness.

Jaffe and Miller (1994) lamented that although many AD studies focus on service

delivery systems and methods to improve memory and cognition, the voice of the

individual with the disease is conspicuously absent. Already marginalized in society

because they are elderly, persons with AD are further ignored because of preconceived

ideas about their inability to interact and share their world with the researcher. Thus, the

world view from the perspective of the person with AD is largely absent, and people with

AD are rarely given a voice through the AD literature or research. Cotrell and Schultz

(1993) alluded to the patient perspective being ignored in AD research and called for the

inclusion of people with EAD as research subjects, since at this stage they are able to

contribute to our understanding of the illness and its course. This study is an attempt to

fill this significant void. My own experience, and that of others ("Groups offer support",

1995; Cohen,1991) indicates that persons with early AD are willing and able to talk about

early memory loss and how it affects their lives. Dialoging with the person diagnosed

early in the AD process places them, as suggested by Zarit and Downs (1999), on "center

stage" and locates the "the person back into dementia care" (p.6).







For many experiencing their initial awareness of Alzheimer's dementia, the initial

symptoms are usually subtle, but often profound enough to make one aware of a

significant functional change (i.e. getting lost in a familiar area, forgetting something of

importance, or noting problems with language fluency). For purposes of this study,

persons were considered for inclusion if one of their current symptoms was early memory

loss (EML), with the memory loss due to probable AD or any related disorder (based on

the Alzheimer's Association criteria including dementias occurring from AD and other

related disorders such as vascular disorders or Parkinson's disease. The emphasis was on

self awareness of the early memory loss. The inclusion criteria were that the person with

the EML received an initial diagnosis of probable Early Alzheimer's Disease (EAD) from

their physician, and possessed a basic desire and ability to share the experience concerning

his/her change in memory functioning.

PuWose of Study

This qualitative study was an attempt to elicit the heretofore silent voices of

persons with EMI due to probable early AD, and to co-create the meaning of their world,

with the person as an active participant in the research process. The research focused on

how individuals experiencing EML lived with the changes occurring in their lives,

including how they interacted with others. The aim was the generation of a substantive

theory through the use of the grounded theory method. To meet the aim of the research,

individuals had to be willing and able to admit that they had EML, know that it was due to

probable EAD, and agree to dialogue with me regarding these changes. The goal was to

discover the basic social psychological process that persons with early memory loss

experienced as they become aware of losing their connection with the world.







The research questions were (1) what is the basic social psychological process

(BSPP) experienced by persons with early memory loss, (2) what contextual conditions

influence the experience of early memory loss, (3) what are the consequences of early

memory loss for the diagnosed person, and (4) what are the social structural problems that

early memory loss clients experience with this diagnosis.

Significance of the Study for Nursing

The goal of qualitative research is to understand life by taking into account

meaning, the interpretive processes of people, and the contexts in which these processes

occur (Jaffe & Miller, 1994). This emic approach, emphasizing the view of the

participant, is the hallmark of the qualitative researcher. By attempting to enter the world

of the people being investigated, we can gain a better understanding of their situation.

The naturalistic field work approach and qualitative data collection methods used in this

study allowed me, the nurse researcher, to enter the world of the person with EML, in

order to gain an authentic perspective from the client. By better understanding the

experience of persons with EML, nurses can appreciate their concerns, appropriately

identify their needs, and develop strategies to support them in the most appropriate

environment.













CHAPTER 2
REVIEW OF THE LITERATURE
This literature review presents an overview of symbolic imteractionism (SI), the

theoretical framework for the grounded theory method, and its relationship to this study.

The concept of the self as viewed from the SI tradition is discussed, especially the

changing self as experienced by the person with EML. The biomedical and sociogenic-

focused literature on AD is reviewed, as is the subject of EML from the perspective of an

early AD diagnosis, since it is in this stage of AD that a person becomes aware of the

primary symptom of memory loss.

Various texts, papers, ethnographies and narrative analyses were also reviewed for

their theoretical application to this subject area. As the grounded theory method suggests,

the secondary literature review was done at the time that the emergent core categories

presented themselves, and provided direction to an area of focus (Glaser, 1978). The

initial review served to sensitize me to applicable concepts, and also served as a basis for

identifying the significance of the knowledge gap in this substantive area.

Theoretical Perspective

This study aimed to develop a substantive grounded theory about the experience of

people with EML. Each research method is linked to a philosophical perspective, and

symbolic interactionism (SI) provides the philosophical foundation for grounded theory

and guides the research questions, interview questions, data collection strategies and data

analysis (Hutchinson, 1993). There are many variants of the SI perspective; the largest







and best known of these is from the (University of) Chicago school, and articulated by

Herbert Blumer (Reynolds, 1994).

Blumer's (1969) version of SI is based on three basic premises:

" "Human beings act toward things on the basis of the meanings that things have for
them" (p. 2). Things can be physical objects, other human beings, institutions, ideals,
activities, and any situation encountered in daily life. Traditional social-psychological
science discounts these meanings, and relates behaviors to outside fitctors (such as
stimuli, attitudes, motives or roles) rather than viewing the meaning of things as
central.

" "The meaning of such things arises out of the social interaction that one has with one's
fellows" (p. 2); meaning is not intrinsic to the object or a result of psychological
manipulation. Real meaning arises through the process of interaction between people.

"These meanings...are modified through an interpretive process used by the person in
dealing with things he encounters" (p. 2); the person communicates with the self in
order to modify or alter the meaning of objects.

Symbolic interactionism is a social-psychological theory of social action. The

central organizing concepts of the SI theory are "the self, the world, and social action"

(Bowers, 1989, p.36). Since the self and the world are socially constructed, and ever

changing through the process of social interaction, they can only be understood within the

context of social interaction (Hutchinson, 1993). Symbolic interaction suggests that

people order their world by interpreting and eliciting the meanings in situations, rather

than simply reacting (Morse, 1994).

By directly talking with the person with early memory loss about their experience

with this phenomena, the researcher can tap directly into the person with AD's "lived

experience" and attempt to find what is central to the early memory loss experience.

Coenen (1991) discovered that through the use of a qualitative method (phenomenology)

and a fieldwork approach with roots in the SI perspective, he was able to locate meaning

and logic within the world of the demented elderly, and discover "relevance for both







theory and everyday social relations and practice" (p.316). Mines (writing in the

forward to Gubrium's 1993 Speaking of Life) reminds us that..."people are creatures who

communicate through symbols, and are part of the very environments they create, and

their essence rests in a selved, ongoing and always partially formed intersubjectivity"

(p.xii).

Because qualitative researchers attempt to understand the world from the

perspective of the research subjects, this is best done by the use of a research method that

will allow them direct access to this perspective. The grounded theory method provides a

mode for eliciting these meanings and for describing the social and psychological

processes that people use to make sense of their world (Morse, 1992). Through the

process of interaction with persons with early memory loss, I gained access to how

individuals with early memory loss make sense of the life changes they were experiencing.

Perspectives on Early AD

Self

George Herbert Mead, from the Chicago school and a mentor to Blumer, is

considered by many to be the founding father of the S.I. tradition. He developed the

theory that human society is composed of persons with selves, and these selves can only

be developed within an interacting, communicating society. He conceptualized the self as

a social process involving two distinguishable phases known as the IT and the "me"

(Reynolds, 1990). The "me" acts as the object of self-reflection, the "I" acts as the

reflector. The "me" can be identified, talked about and defined to others, and each person

is composed of multiple "me's" (i.e. mother, student, nurse). The "I" interacts dynamically

to interpret the environmental cues and relate them to the "me's." This interpretive







process of the "I" shows the creation of the self to be a process (Bowers, 1988). Thus,

the self is shown to be socially constructed, is processual, and it is this social self that

becomes the object of research.

This social sense of self is integral to the process of SI, a self that can search and

test others' interpretations of their actions (Gubrium, Holstein & Buckholdt, 1994). This

understanding implies that one possesses the ability to engage in social discourse, interpret

the meaning of one's actions, and assess the response of others. Yet, with AD, the ability

to engage in meaningful dialogue progressively deteriorates. Some researchers believe it

is this cognitive deterioration that ultimately affects and prevents certain forms of

discourse, resulting in a loss of connection with others and the eventual loss of self.

Goffman (1959) used a variant of the SI approach, the dramaturgical genre, to

explain his theory of social interaction. His premise was that when people interact, they

use symbolic devices in an attempt to manage impressions. He used the symbolic

metaphor of"life as a performance upon a stage," with the goal of convincing others of

the authenticity of one's self by the use of fellow actors, props, and attention being paid to

front stage performance. The actor maintains his part (impression management) by careful

control of his lines, and avoidance of"unmeant gestures" and "inopportune intrusions"

(performance disruption). Goffinan's analogies are useful in trying to understand the

impact that memory loss has on social relationships, and the great effort that persons with

early AD must use in an attempt to preserve their sense of self. As so poignantly

expressed by McGowin (1993), a person with early AD who has written of her

experience, "life had become an improvisational theater, and I was left to ad lib my way

through it" (p. 64).







For a person with an EML, the process of social interaction has the potential to

alert both parties to the idea that something is different or wrong. Since meanings arise

and are modified through an interpretive process, both parties might respond to this

awareness by making a choice; to either deal with or avoid the meaning of the "realized"

or "sensed" difference.

Cromwell and Phillips (1995) presented data from a qualitative study on the

subjective experience of forgetting. They reviewed the social consequences of forgetting,

and suggested specific teaching strategies focused on helping the forgetful elder learn

"impression management" techniques (as in Goffinan, above). Successful coping was

demonstrated by the use of preventive strategies that allowed these elders to maintain their

social structures.

Biomedical Focus and AD

Starr (1982) traced the growth of the biomedical model of medicine and science

that became dominant through the late 19th and early 20th centuries. Many life processes

considered "normal" over the span of centuries became "medicalized" and controlled by

physicians, including aging and senility. Estes and Binney (1989) criticized this biomedical

model for its effect on our perception of aging in this society, specifically the social

construction of aging as a medical problem. This social construction of aging as a medical

problem emphasizes diseases of the elderly, while often discounting the social and

behavioral processes and problems of aging, and the positive and growth possibilities of

aging. Health/public policy and research for aging are all greatly influenced by the

biomedical model.







Lyman (1989) extends this critique of the biomedicalization of aging to apply to

dementia. She feels that the disease/cure mindset obliterates the focus to other areas of

dementia research need, such as an assessment of social settings and relationships that are

contextual to the patient's functioning. Lyman (1993) examined the social organization of

day care and its effect on caregivers and AD clients. She discussed the evolution of the

social construction of dementia and how caregivers in the health care system have come to

"medicalize" the "disease." In this context, caregivers view the behaviors that AD clients

exhibit as deviant, and their response is an attempt to control those behaviors.

Society's preoccupation with defining dementia as an illness was identified by

Gubrium in 1986. In his book Oldtimers and Alzheimer's, he argued that it was not

always possible to distinguish normal aging from AD. He contends that the effort is one

of caregivers (lay and professional) trying to make sense, or attempting to construct order,

out of the very disordered situation of AD. By medicalizing AD, caregivers can attempt

to bring meaning to their disordered reality. He suggests that the medicalization of AD

has given legitimacy and a framework to all efforts in the AD field, especially research and

practice.

One of the negative effects resulting from this medicalization construct has been a

stigmatization of persons with AD, resulting in limited social opportunities, increased

dependency, medical control, and the debasement of the self (Lyman, 1989; Herskovits,

1995). In early AD, one could use passing, covering, and impression management

(Goffian, 1963) but these tactics require "cooperation between the stigmatized and the

normals"; (p.139) an ability that is thought by some to disappear as the person with AD

experiences cognitive decline.







Rather than the typical biomedical approach to studying AD, the sociogenic

perspective views the person with EML as a social actor living with an impairment and

interacting with others in living situations. Most importantly, this perspective emphasizes

the importance of the caregiving environment (both place and personnel) as a place where

the early memory loss client acts and interacts versus seeing the illness itself as a modifier

of client behavior (Lyman, 1989; Jaffe & Miller, 1994).

Sociogenic Focus and AD

The sociogenic focus increasingly seen in the literature in the last two decades

developed as a reaction to the dominant biomedical focus of aging and AD. Even with

this shift in focus, many perspectives exist to describe the experience of self and AD.

Most of these viewpoints use an interactionist framework, but differ depending on where

they locate the "self." Some feel the self is connected with loss of cognitive skills (Cohen

& Eisdorfer, 1986); others see it hidden, unable to be articulated by the person with AD

(Gubrium, 1986), and others locate it within one's social interaction skills that maintain

(self) identity (Orona, 1990; Charmaz, 1983).

Cohen and Eisdorfer (1986) stated that with the AD diagnosis, clients and their

familis must come to terms with a disintegration that eventually leads to a total loss of self

for the person with AD. Yet, the gradual trajectory that usually occurs with AD implies

there still can be a "sense of self' for some time, and that persons with early AD are aware

of and can use this "self' in an attempt to cope with the confusing changes that are

happening to them. Cohen (1991) described the earlier research (hers and Eisdorfer's) on

the subjective experience of persons with AD. They reported six stages of change

experienced by patients with dementia, similar to the classic stages of death and dying.







Although organized in a linear fashion, the reactions do not always occur in a step

progression, but the framework acknowledged the "self' component. The stages included

recognition and concern ("something is wrong with me"); denial ("not me");

anger/guilt/sadness (why me"); coping (in order to go on, I must do"); maturation ("living

each day til I die"); and separation from self (p. 8). This sixth stage, the separation from

self, can occur much later, and the processual nature of these stages serves to emphasize

that insight and ability of persons with AD does persist through the early and middle

stages of AD. These authors inform us that with an AD diagnosis, there is an eventual

complete loss of self, and yet the essential humanity of the person remains, because
"people do not consist of memory alone," they can still touch us through their "feelings,

imaginations, desires, drives, will and moral being" (p. 22).

Cromwell's (1994) grounded theory study on the subjective experience of

forgetting perceived forgetting as a "personal response.. .between one's forgetting and

one's social world" (p. 445). This interactionist perspective enabled the author to focus on

how forgetting affects elders' social relationships, and how these altered relationships

affect elders view of the self The author described how forgetful elders engage in a

process of self-assessment, coping and reassessment, with the goal being maintenance of a

sense of self.

Kitwood and Bredin (1992) described a philosophy of dementia care that gave

centrality to both subjective and intersubjective personhood. Their view of the person

with dementia acknowledged the degenerative neurological changes of AD, but then

emphasized the importance of including the personal psychology of the person and the

social psychology of their environment. Considering each of these constructs as equally







important and interactive resulted in "good care" which was respectful of personhood;

while an emphasis on only the physiological decline resulted in a "malignant social

psychology" or care that was destructive to personhood. As the person with AD declined

neurologically, the increasing importance of supportive others was emphasized. Kitwood

(1993) further developed this theory of dementia care through an analysis of interaction

with persons with AD. He emphasizes the importance of facilitating communication in a

supportive manner, with an emphasis on emotion and feeling states, rather than cognition.

The result can be that the person with AD maintains a state of "relative well being."

Sabat and Harre (1992) supported this social interactionist framework, which emphasizes

the preservation of self through the agency of others. By analyzing the discourse of

persons with AD, they were able to show that "self' is maintained late into AD, and our

social "selves" can be maintained through the process of social construction with others.

Golander and Raz (1996) argued that because the "I" (social) and "me" (personal)

components of self become split in dementia, the conventional SI / SC approach of

viewing "self' as interactive is questioned. They found that as the personal aspects of

identity were lost, a social identity was often constructed for the patient by family and

staff. Gubrium (1986) also noted that families socially constructed a "mind/self' for AD

patients. Using Mead's theory of mind/self in his field work with AD patients and their

families, he found that as the internal (private) mind/self deteriorated from AD, the

caregivers became the agents responsible to preserve the mind/self, to externalize it

(socialize it), and to give it voice.







Herskovits' (1995) comprehensive review of the conflicting literature concerning

the self and AD yielded several models based on differing frameworks. These included:

the self as:

" An internal personal identity, separate from sociality
An intersubjective public / social project, which can be damaged by stigma / negative
social interaction
An ontological construct, (i.e. the disease defines the person)
" An ongoing linguistic process, understood via narrative processes
A dynamic interaction between social, individual and biological.

The author noted that none of these models relied on cognitive ability as a location for

self, perhaps an indication that we are progressing past the biomedical focus toward a

more humanistic perception of the person with AD.

The idea of maintaining a "sense of self' emerged as a predominant theme in

Kaufman's (1986) grounded theory study of aging persons and their accounts of the life

course. What surfaced was the idea of stressing "self' vs the aging body; or prioritizing

and privileging "self' over "body." Her informants did not perceive meaning in aging per

se, but in just being a continuation of themselves in old age. She found that when they

talked about themselves, they expressed a sense of self that was ageless; they maintained

a continuity of self despite physical and social changes in their lives. This sense of

continuity and meaning helped them cope with life's changes. This primacy of "sense of

self' is what we must be concerned with and emphasize in our approach toward persons

with early memory loss. It should be a moral imperative for those of us involved with

persons with AD.

Early AD Experience

The research literature on early AD from the perspective of the person with EML

is particularly sparse. One possible reason for this is the problem of accurate assessment.





15

Early symptoms are quite insidious, and easily hidden behind a veil of well retained social

skills. Only when the person with early AD begins to exhibit functional problems related

to cognitive and social skills, do others become aware of their deficits.

Keady and Nolan (1994, 1995a, 1995b, 1996) from the United Kingdom

developed a nursing research program focused on the early stage of dementia. Their initial

studies concentrated on the needs of the informal caregiver for the person with AD; they

subsequently interviewed 38 family caregivers, and used these data to develop a model of

the dementia experience. Compiling the data into an AD trajectory, they identified

separate stages of dementia progression, including slipping, suspecting, covering up,

revealing, confirming, surviving, disorganization, decline and death (1994). This caregiver

perspective of the early dementia experience was later shared with 10 EAD sufferers, and

the authors report that the "model proved robust" (1996), except for the surviving stage,

which was changed to a more positive maximizing stage. The authors then interviewed

the 10 EAD sufferers, using the grounded theory method, to assess their subjective

experience of coping with EAD (1995). The outcome was the development of the Index

for Managing Memory Loss (IMMEL) instrument, suggested by the authors to be a useful

tool in clinical practice to assess the EAD person's coping strategies. As these authors

emphasize, only when we educate health care professionals on the need for an early and

accurate diagnosis with AD, will it be possible to intervene to offer appropriate supportive

assistance through these treacherous early stages.

Early AD: clues to diagnosis

The AD literature has increasingly begun to focus on the experience of early

Alzheimer's Disease (EAD), also called mild dementia, as a separate and distinct phase of







the very long and arduous Alzheimer's Disease process. Advantages given for an EAD

diagnosis include the opportunity for individuals with AD to have input into their future

plans and decisions, and that a yet-to-be-developed curative or stabilizing therapy would

be most effective if applied in the early stages (Berg, 1990). Advantages for the family,

clinician and society should also be considered, and should include opportunities for

increased communication, sharing of correct information and consideration for inclusion in

research studies (Doraiswamy, Steffens, Pitchumoni & Tabrizi, 1998). Perhaps the best

reason for an early diagnosis is the opportunity for the person with the problem to share

their feelings, hopes, fears and desires for the future with their loved ones and their health

care practitioners, and perhaps to experience the opportunity to come to an understanding

about their changing sense of self.

A major problem with EAD concerns establishing the diagnosis. To further

confuse, terms such as age associated memory impairment (AAMI) and mild cognitive

impairment (MCI) are sometimes used interchangeably with EAD. There are no

universally agreed upon-criteria for early AD, and no standardized methods of detection.

Often, the only reported symptom is memory impairment, and this in itself does not allow

for a dementia diagnosis. A Mayo-affiliated study identified a group of patients who had

forgetfulness beyond that expected for their age, but who did not have AD (Petersen et

al. 1999). These patients experienced MCI, with memory being the primary complaint,

while other cognitive functions remained stable. These patients did continue to have

decline over time, but not as rapid as the patients diagnosed with AD, thus prompting

these authors to conclude that MCI is a different entity than either normal aging or AD.

Recently, the American Academy of Neurologists (AAN) clarified the dilemma by







updating their practice guidelines for the detection, diagnosis and management of AD.

They defined MCI as the clinical state of being memory impaired but otherwise able to

function well. While persons with MCI did show deficits beyond normal aging, the AAN

did not believe that they meet the criteria for dementia. However, they probably have a

higher risk of developing dementia (Alzheimer's Disease and Other Dementias, 2001).

According to the American Psychiatric Association, Diagnostic and Statistical

Manual of Mental Disorders, 4' ed. (1994), criteria for dementia include multiple

cognitive deficits manifested by both memory impairment (learning new information and

recalling previously learned information) and deficits in one or more of the following

cognitive areas: aphasia (language problems), apraxia (motor function difficulties), agnosia

(recognizing and identifying objects) and higher level functioning (planning, executing,

organizing, sequencing). In addition, the person exhibits social or occupational functional

problems, and experiences a gradual onset and continuing cognitive decline. Criteria of an

early work group of experts, the National Institute of Neurological and Communicative

Disorders and Strokes-Alzheimer's Disease and Related Disorders [now called the

Alzheimer's Association] (NINCDS-ADRDA) are similar to those of the DSM -IV,

including changes in memory and cognitive function, except that they did not include an

impairment in social or occupational functioning ( McKharm et al. 1984).

The Alzheimer's Association (1995b) stated that their major goal to improve the

diagnosis of AD can be assisted by "improving the ease and accuracy of testing for AD"

(p.1). Some authors have called for routine screening of the elderly population in order

to detect initial cognitive changes; they also stress the need for testing instruments that are

disease specific, reliable and valid, and sensitive and specific (Henderson & Huppert,







1984; Storandt & Hill, 1989). Ganguli (1997) advocated screening for dementia as an

important public health concern, stating that screening is critical for secondary prevention

(early diagnosis and treatment) and for community surveillance and planning for health

services. She stressed that objective cognitive testing is the most logical approach to

screening for EAD, but also acknowledged the importance of ancillary measures, such as

functional assessment scales, and self/ family/ significant other reports as useful

supplemental information. All authors emphasized that screening tests are only the first

step in a diagnostic workup and not diagnostic in themselves, especially since many of the

screening tests used for AD/ dementia have not proved sensitive enough to detect the

early stages of AD.

A panel of experts, convened by the Agency for Health Care Policy and Research

(AHCPR) developed the Guidelines for the Recognition and Initial Assessment of

Alzheimer's Disease and Related Disorders (U.S. Department of Health and Human

Services, 1996) in order to assist health care practitioners in recognizing early-stage

dementias. The AHCPR panel was initially convened to develop a guideline for screening

for AD and early dementias, but after exhaustive analysis of the literature on screening

tests, they decided the following:

No evidence existed to use one particular screening test over another
" None of the tests had a high sensitivity for early or mild dementia
" There was no efficacy in using a general screening test for AD given the lack of specific
treatment available and the problems with EAD recognition.

Thus, they stated that routine screening for dementia is not warranted. The panel did

advocate cognitive and functional assessments as part of the comprehensive diagnostic

work-up of persons suspected of having AD. The panel cautioned that brief mental status

tests are not diagnostic but that they are useful in developing a multidimensional clinical





19

picture. When used with other data, they provide a baseline to compare cognitive decline

over time, they can reassess patients that presented with delirium or depression on initial

evaluation, and they can document multiple areas of cognitive decline as required when

diagnosing dementia.

Diagnostic tools

Many tests exist to evaluate the cognitive, fictional and behavioral problems of

individuals with AD, and to assess their disease-specific stages. Clinicians, especially in

the busy managed care environment of today's office practice, are interested in a test that

can be used as a brief screening device but also one that accurately evaluates the difference

between "normal" aging losses and those that might truly be considered pathology (Issues

related to the social structural barriers with the use of routine screening are discussed in

Chapter 4).

Basic clinical assessment of a client for possible dementia must minimally include a

focused history, a focused physical exam, and assessments of functional and mental status

(AHCPR guidelines, 1996). The focused history and physical exam should concentrate on

the chronology of the mental status changes, including onset, progression and duration of

symptoms, as well as examining for any problems that could contribute to changes in

mental status, eg. medications, metabolic problems, and nutritional status. Many tools

have been developed that assess functional and cognitive status and are used for basic

screening in conjunction with the initial clinical assessment. Other measures include tools

for global staging of the disease, and also neuropsychological tests that are performed by

specialists and not included in this review due to their speciality focus and time demand for

completion and interpretation.







Cognitive assessment tools

Classic screening tools to assess cognitive decline include the Mini Mental State

Exam (MMSE) (Folstein, Folstein and McHugh, 1975), and the Short Portable Mental

Status Questionnaire (SPMSQ) (Pfeiffer, 1975). The most widely used is the MMSE,

developed as a tool for the cognitive assessment of people in clinical and research settings.

It tests orientation (time and place), registration, attention and calculation, immediate and

delayed memory, language abilities (aphasia, agnosia, apraxia) and visuospatial abilities

(copying a diagram). It is short (30 items), brief (easily completed in 5 minutes), and

easily administered by professionals or trained lay persons. It is meant to be informative

regarding the person's mental abilities, but not intended to be diagnostic

(Cummings,1993). Some researchers consider it reliable and valid (Anthony, LeResche,

Niaz, Von Korff, and Folstein, 1982), but note that it must be interpreted with

consideration of age and education (Crum, Anthony, Bassett, and Folstein, 1993).

Critiques of the MMSE include the negative influence of low educational achievement

levels (below 8th grade) and its lack of usefulness in assessing late stage AD clients

(Kluger and Ferris, 1991). Also, a flaw in the scoring method for the MMSE was

identified, but many still use the MMSE in the original form (Schulzer, Calne, Snow and

Mak, 1993).

The Short Portable Mental Status Questionnaire (SPMSQ) is a 10 item tool which

tests short and long term memory, orientation to person, place and time, and mental

calculation ability. It was developed to be used as an initial quick screening tool in any

setting (hence the terms short and portable). It was specifically designed to be used with

the elderly population and was standardized and validated with this population (Pfeiffer,

1975). It is considered a useful test for later stage AD clients (Baker, 1989), although a





21

deficiency is that it does not include all the components that must be measured according

to the DSM- IV criteria for dementia.

The Blessed Information Memory Concentration (BIMC) test (Katznan,

Brown, Fuld et al, 1983) has 29 items measuring short term memory and information

recall, and concentration ability. A shortened version of this test, the Blessed Orientation-

Memory Concentration (BOMC) test was developed by the same authors by selecting 6

of the 29 original BIMC items (based on a series of statistical analyses) and giving them

weighted scores. Some authors suggest combining instruments, for example the BIMC

and the MMSE, in order to assess a broader range of cognitive functioning (Weiler,

Chiriboga & Black, 1994). The Short Test of Mental Status (STMS), developed by a

group of Mayo physicians (Kokman, Naessens & Offord, 1987), tests eight areas of

cognitive functioning, including orientation, attention, immediate and short term recall,

calculation, abstraction, construction / copying (praxis), and information storage.

The AHCPR panel did a meta analysis of the most commonly used brief mental

status assessment instruments, and reported that four tests are largely equivalent in terms

of their ability to differentiate between persons with and without dementia. These tests

include the MMSE (Mini Mental Status Exam), the BIMC (Blessed Information Memory

Concentration test), the BOMC (Blessed Orientation Memory Concentration test), and the

STMS (the Short Test of Mental Status). The panel purports that any of these four

screening tests are largely equivalent. They acknowledged the MMSE as the most widely

used test, and also the most comprehensive. It is the one test that documents multiple

cognitive components, including all but two components (judgement and abstract

thinking) required in the DSM IV criteria for dementia diagnosis, as well as testing the







requirements of verbal response, reading, writing, mathematical ability, and vision and

motor control skills.

The Seven Minute Screen test was developed after the publication of the AHCPR

guidelines and thus was not included in their meta analysis. It uses words and pictures to

assess orientation, memory and language, and tests visuospatial ability by use of the clock

drawing (Soloman et a1.1998). The authors report a high sensitivity and specificity for

AD, and report the test is helpful in making initial distinctions between patients

experiencing cognitive changes related to the normal aging process and those relating to

dementia. It is also reliable and valid (Soloman & Pendlebury, 1998). The Alzheimer's

Association hailed this test as "extremely useful," especially in differentiating early changes

indicative of EAD (Alzheimer's Association, 1998).

The clock test has been available for many years as a quick and simple test that can

be used in any clinical setting. Multiple versions of this test are in publication, and the

problem becomes a lack of consistent directions or a consistent scoring method: it can be

administered either by drawing-to-command or copying, it can include correct placement

of numbers, correct placement of clock hands drawn to a specific time, or verbally having

the person indicate the correct time on a predrawn clock. In practice, many clinicians use

the clock test as a supplement to the MMSE or other tests of mental status. It is

considered useful as a screening tool in tracking rates of disease progression (Rouleau,

Salmon, & Butters, 1996), and identifying AD in later stages, but is not particularly

sensitive for early AD (Lee, Swanwick, Coen, & Lawlor, 1996).

Functional assessment tools

Tools have been available for many years to assess the functional ability of clients,

including the Katz Index (Katz, 1983) and the Barthel Index (Mahoney & Barthel,1965)







which assess activities of daily living (ADL's) such as bathing, dressing, toileting, and

mobility, and the Instrumental Activities of Daily Living Scale (Lawton & Brody, 1969)

which assess IADL's such as shopping for food, obtaining transportation and paying bills.

While some decline in ADL's is required to establish a diagnosis of AD (Kluger & Ferris,

1991), the tools currently available were developed for use with the physically impaired,

and are not sensitive to the difficulties experienced by the AD client (Tappen, 1994).

While the above tools are useful in their ability to standardize screening procedures, can be

administered rapidly and are able to communicate the range of the deficit (Baker, 1989),

they are not sensitive enough to assess AD in the early stages. They are useful in

assessing basic functional problems with ADL's and IADL's, but do not identify available

strengths, especially in the early stages. They also do not allow for insight into the

meaning of the emotional state of the person with memory deficits.

Impairment in functional ability is part of the DSM- IV criteria for AD, and an

adequate assessment tool is crucial. Often, the first signs of dementia that are noticed are

in the functional domain; they are usually reflective of a change in cognition. The AHCPR

panel did recommend early assessment of a person's functional ability by use of the

Functional Assessment Questionnaire (FAQ) (Pfeffer, Kurosaki, Harrah, Chance &

Filos,1982) because of it's ability to discriminate for early stage dementia. The FAQ is an

informant based test that evaluates complex, higher order functional activities such as the

IADL skills mentioned above. A reliable informant familiar with changes in the person

with EAD's abilities is necessary, although the panel did acknowledge that a person with

very mild dementia might be able to provide valid reports of their own functional ability.





24

Although not included in the AHCPR guidelines, another component of the clinical

assessment involves the staging of a person by use of a global staging tool. These tools

measure the overall symptom severity of AD and include the Clinical Dementia Rating

scale (CDR) (Berg,1990) and the Reisberg Global Deterioration Scale (GDS) (Reisberg,

Ferris & de Leon, 1988). Global scales are based on clinical signs, symptoms and

behaviors, with information elicited from both the client and the caregiver (Kluger &

Ferris,1991). Caregiver input is believed to allow for a more complete picture of the AD

client's total functioning. The CDR scale describes 5 stages of impairment along a Lickert

scale rating system. It consists of six categories of impairment, including memory,

orientation, judgement and problem solving, community affairs, home and hobbies, and

personal care. The GDS, the most widely used tool, uses a 7 point rating system with a

scale that indicates a predictable and ordinal progression of AD symptoms. Eiserdorfer et

al (1992) evaluated the use of the GDS and found that significant psychopathology

occurred at even earlier stages than predicted by the GDS. While acknowledging the

clinical usefulness of a rating scale type of tool that can focus attention on the level of

patient decline, these authors recommended that the most accurate way to describe AD

would be to use separate instruments to rate cognitive status, functional status and

psychiatric symptoms. Kluger and Ferris (1991) compared the GDS and the CDR scale,

finding they are similar in describing the middle stage dementias, but that the GDS scale

better differentiates at both the early stage and the most severe stage of impairment.

Diagnosing early AD remains a problem, even though diagnostic criteria have

existed to evaluate AD since the mid 1990's, including the DSM IV criteria and the tests

suggested for use in the AHCPR guidelines. The experts do not advocate routine







screening for EAD, but do suggest use of specific tools for cognitive and functional

assessment when warranted from findings of the clinical exam, most specifically the

MMSE for cognitive testing and the FAQ for functional assessment, as well as a sensitive

and careful discussion with clients, and their families if warranted, to evaluate cognitive

and functional changes.

Intervention Focus

Strategies designed to assist persons with early memory loss were suggested by

some authors. McDougalrs (1995) quantitative study reported that cognitively impaired

older adults tend to use memory strategies of an internal type (i.e. repetition) versus use of

external devices (i.e. notes or lists used by the cognitively intact). Arkin (1991) suggested

that the use of memory stimulation strategies from the field of cognitive rehabilitation

could be usefid with persons with early AD who still have many functional abilities intact.

The common theme of these authors was enhancement of functional ability, and they

expressed an infusion of hope and optimism for the person with early memory loss and

their caregivers.

Smmay

This chapter reviewed the literature for the theoretical perspective of Symbolic

Interactionism, the basis for the grounded theory research method used in the study.

Blumer's approach to SI was adopted, as it best articulates an approach that offers us

insight and understanding of the person with AD's lived experience, and allows us an

understand of the changing sense of the self experienced by person's with EAD.

Viewpoints to understanding the AD experience were reviewed, with a comprehensive

analysis of the sociogenic literature, including the literature on the EAD experience. An





26

extensive examination of the EAD diagnostic literature was also done, since it was

realized during data collection that early diagnosis remained an ambiguous and elusive

process.













CHAPTER 3
METHODOLOGY
Research Approach

The qualitative method used in this study was grounded theory (GT), first

described by Glaser and Strauss in 1967. The method was developed for the purpose of

studying social phenomena from the perspective of symbolic interactionism (Bowers,

1989). The SI tradition gave researchers the perspective of the actor's point of view, but

lacked an organized procedure for data analysis (Stern, Allen & Moxley, 1982). Glaser

and Strauss were convinced of the need to develop a research methodology that focused

on data gathered in the field, and based on a theory inclusive of the subject's perspective

(Glaser, 1992); they were also concerned with adding scientific rigor to the SI qualitative

methodology.

The development of the grounded theory methodology by Glaser and Strauss was

influenced by Strauss' research experience at the University of Chicago, which emphasized

the development of a methodology to fit the naturalistic focus of data collection from the

field, and to generate theory grounded in reality. Glaser's background was inductive

theory generation from both quantitative and qualitative research. Their combined

strengths allowed them to develop a field research method that revealed the perspectives

of the research subjects (Glaser, 1992).

The goal of grounded theory is to discover theory from data, systematically

obtained from social research. The emphasis is on the use of the inductive mode to

generate theory from empirical data vs. reliance on the deductive mode of verifying theory

27







through theory testing. Another goal of this type of research is to predict and explain

behavior, as well as develop a perspective on behavior (Bowers, 1988; Glaser & Strauss,

1967). Grounded theory is an especially useful methodology when one wishes to

investigate new or uncharted areas of concern where no theories exist to explain the

phenomenon (Stem, Allen & Moxley,1982), such as currently exists with persons with

early memory loss. Grounded theory is also a useful method which allows for change over

time, and the description of stages and phases within an experience (Morse, 1994) such as

that which occurs with the progression of AD and its concomitant interactional problems.

Qualitative researchers recognize that people construct meanings in relation to the

world in which they exist (Boyd, 1993). People sharing common circumstances

experience shared meanings and behaviors that constitute the substance of grounded

theory (Hutchinson, 1993). An assumption of grounded theory is that people will make

sense of their world, even if that world appears disordered or nonsensical to others.

Another important assumption is that each group of people share a basic social

psychological problem (BSP), not necessarily articulated, and this problem is resolved by

means of a social psychological process (Hutchinson, 1993). The goal of grounded theory

research is thus to discover the intrinsic problem(s), and the inherent processes used to

resolve them.

Unlike the quantitative researcher who desires objectivity, the role of the

researcher with grounded theory is to become immersed in the world of the research

participant, in an attempt to view the world from the participant's perspective. A

theoretically sensitive researcher is both "at one" with the data, while at the same time

entering the process with as few "a priori" hypotheses as possible (Glaser, 1978).







Data gathering for this study was done in the field, using field techniques that

generated data, and included interviews with persons with early AD, as well as analysis of

print and audio-visual media. A diversity of information sources, along with the

theoretical sensitivity of the researcher, should yield data that is dense and a theory that is

complete (Hutchinson, 1993).

Setting

The natural setting is the ideal place to interview and observe individuals. In this

study, all of the participants still lived in their own homes, and most chose to be

interviewed there (N=I 1); others chose places of mutual convenience or neutrality (i.e. a

church office, or my office) (N=5). The interview consisted of a semi-structured set of

interview questions (appendix A) focusing on the person's perspective of the meaning of

their memory loss. The client is considered the expert in describing what is happening,

with the researcher gently probing, if necessary, for more information or clarity, but

always maintaining the focus on the participant's perspective (Bowers,1989).

SaMple

The sampling was opportunistic (Germain, 1993), also called a volunteer or

convenience sample (Morse, 1986). Prospective study participants were initially recruited

through a university affiliated neurology clinic, an AD specific day care center, the

Alzheimer's Association, two primary care medical residency program clinics with known

geriatric components, two church affiliated congregate living facilities, a church affiliated

Meals on Wheels / case management program, a Parish Nurse program, a hospital

affiliated home care program, a hospital affiliated geriatric health assessment program, and







an ARNP practice council group, all in N.E. Florida. An attempted affiliation with a

Memory Disorder Clinic was not approved by that agency.

I visited each of the above named sites, meeting with each director and usually,

other staff members, explaining the nature of my research and the criteria for the subjects

(as described in Chapter I, pg. 5). This approach supported the idea that staff members

can act as key informants in the identification of potential participants, after careful

explanation of the inclusion criteria by the researcher (Rapp, Topps-Uriri & Beck, 1994).

Obtaining referrals for this study proved to be extremely difficult; in actuality, very

few referrals came from any of the above agencies (6 came from the neurology clinic,1

from the AD association, 1 from the geriatric outreach program). Continued

opportunities for sampling were obtained from a word of mouth network that I had

developed over many years in the geriatric nursing field (also known as "a snowballing or

nominated sample," Morse, 1986, p. 184); in fact, this method proved to be the most

effective for obtaining the research participants.

A sample size of 18 EAD participants was achieved, although data collection and

sampling were directed entirely toward the emergent model, seeking" indices of

saturation" (Morse, 1994, p. 230) rather than a specific number of cases. Participants

ranged in age from 70 89, with the exception of one person who was 47 years old and

shared his known familial trait for early onset AD. Six were male and 12 female, consistent

with aging demographics favoring female longevity. Six participants were married, eleven

were widowed, and one (the 47 year old) was divorced but living with a partner.

Four interviews with EAD clients were done when I was a research assistant for a

NINR grant study entitled "An Observational Study of Alzheiner's Disease Behavioral







Symptoms" (1994-1997, P. I. Sally Hutchinson, PhD. R.N., University of Florida,

College of Nursing, Health Science Center, Jacksonville), and this data provided

sensitization to the interviewing process with EAD clients. Due to the inherent nature of

AD, not all participants referred to me were the best informants; for example, some of the

persons admitted to having memory problems and agreed to an interview, but were past

the point in their AD progression where they could articulate with any depth their

thoughts and concerns. This led me to question how clinicians, especially physicians,

distinguished the early stage of AD; subsequently I interviewed five doctors (all

specializing in family medicine or internal medicine with a focus in geriatrics) for their

understanding of EAD and their approach to the diagnostic process (appendix D).

To obtain a fuler understanding of the EAD experience from the perspective of

the diagnosed person, an early stage AD support group for 4 participants living in a

retirement complex was developed, with the participants agreeing to be research

participants. This data was especially fiitful for insight gained into the EAD experience,

and it's subsequent problems and concerns. Data was also obtained experientially from

ongoing clinical experiences in my functional role as a geriatric nurse practitioner.

Theoretical Sampling

Theoretical sampling is the process of data collection for generating theory

whereby the analyst "jointly collects, codes, and analyzes his data and decides what data to

collect next and where to find them, in order to develop the theory as it emerges" (Glaser,

1978, p. 37). Theoretical sampling was a way of checking on the emerging conceptual

framework, as the researcher continually asked questions as to fit, relevance and

workability about the emerging catagories. Published narratives of the EAD experience





32

(both print and video) were used as data, as it was deemed that these peoples viewpoints

would be useful to elaborate and verify the emerging categories and codes. This source of

data served to validate that person's with EAD did in fact progress through a trajectory

that included the earlier stages of Identity work discussed by this study's participants. The

published narratives also offered a view of people as they progressed through the last

stage of EAD, data that I was not able to obtain from a one time interview with

participants, allowing for a fuller understanding of the last stage of Identity work.

Theoretical sampling is a more powerful type of sampling as it permitted me to select

information according to research needs (Morse, 1986). The researcher is being more

purposive in seeking specificity about the evolving categories. As redundancy occurs and

each category is saturated, theoretical sampling ceases (Glaser, 1978; 1992).

Protection of Human Subjects

IRB Process

Institutional Review Board (IRB) approval was sought and obtained through the

University of Florida, Jacksonville IRB office. When it was deemed necessary to collect

additional data, such as from physicians and from participants in an early stage support

group, an addendum was submitted and approved. I also applied and received approval

through the IRB office of St. Vincent's Medical Center, but this source proved unfruitful

for participants and I did not continue to maintain the protocol approval.

Procedure for data collection

In language which could be easily understood by the participant, I explained the

basic idea of the research (i.e. "I would like your permission to use a tape recorder to talk

with you about your experience with memory changes this is for the purpose of research

about people with early memory changes"). The informed consent was also verbally







explained in language that the participant could grasp. If the participant agreed to

participate in the research, an informed consent was then signed by the person with EML.

It was decided that for purposes of this research on EML, if the person could not

understand the discussion adequately in order to give consent, then they were already too

far progressed in their AD to participate. All persons that were asked agreed to

participate, and all family members contacted voiced agreement, as well as support and

enthusiasm. In subsequent contacts, ongoing process consent (Munhall, 1993) was

obtained, by asking the client if they continued to agree to participate in the research

project. If the research process appeared to be causing discomfort to the participant, data

gathering would have been terminated; this did not occur in the study, and, in fict, all

participants voiced relief in being able to discuss their EAD (further discussed in chapters

4 and 5).

If there was a family member living with the person, or a family member who

maintained close contact with the participant, he/she was verbally informed of the research

and the participant's agreement to participate. Some family members chose to be present

for the interview; this was always with the participant's permission, and in some cases,

their request. Demographic information was obtained from participants, and if necessary,

family members or other caretakers when available were also asked to share demographic

and contextual information (Appendix B). Obtaining some of this initial information, such

as birth date or place of diagnosis from a reliable caregiver eliminated the need to "put the

client on the spot" regarding information that their very condition of memory loss might

preclude them from sharing.







When a funily member was available who was knowledgeable about the person

with EAD's day to day functioning, the plan was to ask them to complete the Functional

Assessment Questionnaire (FAQ), (Appendix C), since this tool was suggested by the

AHCPR panel to be sensitive for assessing early stage AD. However, this data source

was completed by only 3 of the participants caregivers (out of the 7 who had families

members living with them) as it seemed to not provide a "true" score of functional ability,

since many couples had learned to compensate, both for the EML and the aging process,

by "sharing" the functional tasks of living. For example, Mr. M.'s score for the FAQ was

difficult to calculate because his wife, typical of many caregivers, assisted him in the

completion of the many IADL functions so that they were done as a shared activity, as a

couple. Together they payed the bills and kept the household accounts; also they shared

in the shopping and light cooking. They lived in a senior housing complex which provided

a supportive living environment for the more complicated meal preparation and

housekeeping. He still drove, although they both admitted to discussing directions if

driving in new or crowded areas. She admitted to keeping tract of important dates such as

family birthdays, and he kept up with appointments by keeping notes on calendars. Other

participants disclosed that they had already turned over to complex tasks, such as money

management, to their children; many admitted to voluntarily giving up driving.

Anonymity of the participants was protected at all times by the use of initials

instead of names. Even though precise information from transcripts was included in the

findings, the identity of the participants was never disclosed. Only faculty, research

seminar students and a transcriptionist shared access to the data, and confidentiality of the





35

participants was maintained at all times. Cassette tapes were transcribed and coded so as

not to disclose the identity of participants.

This research was physically noninvasive, and posed minimal participant risks. If a

participant had become upset by the interview process,as an Advanced Geriatric Nurse

Practitioner with many years of practice, I possessed skills to calm the client. Munhall

(1993) discussed how the sharing of one's fears and problems in the context of an

interview is construed by many to have a therapeutic effect. In fact, the participants in this

research continually told me how relieved they were to be able to dialogue with someone

about their fears and concerns.

Data Collection

Interviews

Data was collected via participant interviews in a setting convenient for the

participant (and caregiver, when involved). The informed consent was signed before the

interview began (Appendix E-1 for client, E-2 for physicians). Interview time for the

participant depended on their ability to continue to answer a set of semi structured

questions without being redundant or circuitous, but on average did not exceed 45

minutes (Appendix A-interview questions for EAD participants, appendix D for

physicians). All interviews were tape recorded, transcribed and coded/analyzed according

to the method of Glaser (1992).

Participant observation

Participant observation data was only obtained when the interview was done in the

home (N =11). Boyd (1993) stated that the researcher should strive to collect data which

best describes the person-environment relationship, and behavior is best understood in the





36

context in which it occurs. Also, it is important with elders to collect more than one type

of data, for example, observation and interview data, to create a more thorough picture of

the phenomena being studied (West, Bondy, & Hutchinson, 1991). This idea proved to be

applicable to this research, as I was able to identify more about the functional ability of the

person with EAD when I observed them in their own home environment. I was able to

observe the compensatory strategies used by persons to function at their optimum level;

for example, the complex system devised by Ms. H to safely take her daily medications,

the calendar system used by Ms. J with her day to day life reflected in items that were

recorded, and the detailed listing of tasks that assisted Mr. B. to be able to operate

independently in his home during the day when his girlfriend was at work.

Data Analysis

Constant Comparitive Method and Substantive Coding

With the grounded theory method, data are simultaneously collected and analyzed

according to the constant comparative method. After the interviews were transcribed, I

looked for codes within the data. The initial process, called substantive coding, began

with an open coding process, whereby each line of data was analyzed, thus fracturing the

data. These initial substantive codes were constantly compared, in order to yield

categories and properties which were indicative of the core variable or Basic Social

Process (Glaser, 1978). For example, initial level 1 codes such as covering, excusing,

hiding behaviors, and telling friends, became level 2 categories under disclosure work.

The researcher constantly attempts to elevate concepts to a theoretical level, and ask

questions about the relationship of codes to each other (Hutchinson, 1993). This method

is both inductive as well as deductive, in that the codes that are inductively developed are







constantly compared, then reduced into categories (clusters) in a manner reflective of

factor analysis (Stem, Allen & Moxley, 1982). As data were jointly collected, coded and

analyzed, the theory began to emerge; continued data collection was controlled by

theoretical, or purposive sampling according to the emerging theory; for example,

collecting further data from the published narratives.

Theoretical Coding

Substantive coding evolves into theoretical coding when relationships between

substantive codes are discovered and theoretical linkages are made to contain, describe,

and explain the data (Sandelowski, Davis & Harris, 1989). Just as the substantive codes

help to fracture the data, theoretical coding helps to weave the data back together.

Theoretical codes conceptualize how the substantive codes may relate to each other as

hypotheses which can be integrated into a theory (Glaser, 1978). There are a number of

basic sociological codes that can be used; Glaser calls them the basic coding families.

These codes include the six C's (causes, contexts, contingencies, consequences, conditions

and covariances), as well as codes relating to process, degree, dimension, type, stategy

and many others. The purpose of these coding families is to pull the researcher out of the

data and elevate the thinking to a theoretical level. In this research, these basic codes

proved useful in identifying the process of Identity work, and the conditions and

consequences for the various stages and phases.

Memoing

The relationships between codes are discovered through the process of memoing.

As the researcher sorts and integrates the memos, the theoretical ideas emerge and are

recorded. Memoing is a vital part of the research process, is used from the very







beginning with the open coding step, and continues through to the end of the research

process. "Memos are the theorizing write-up of ideas about codes and their relationships

as they strike the analyst while coding" (Glaser, 1978, p. 83). Memos serve to raise the

data to a conceptual level, develop the properties of each catagory and begin the process

of making connections between catagories and their properties. The coding process

constantly stimulates the researcher to develop ideas about the codes and their

relationships, and it is these ideas conceptualized into memos that result in the theoretical

codes that lead to a generated theory.

The process of memoing is simple but crucial. The researcher stops and writes a

memo whenever an idea or a thought about the research strikes him/her; it is a process of

recording ideas about the research as the ideas occur. Memos are written up as short

sentences, paragraphs or pages; they can be written as methodological notes, (MNs),

personal notes (PNs), or theoretical notes (TNs). They must be kept separate from the

data, and in a retrievable form, but referenced to the field notes from which they emerged

for later checking. The memoing process in this research was crucial in identifying ideas

about codes and categories, and which became the basis for theoretical thinking,

developing the codes into categories and then theoretical constructs. The memos

regarding method were especially crucial in this research, since interviewing people with

EAD is such an uncharted area; often leading to clinical judgement and even change in

procedure. In this research, memos regarding the difficulty in finding appropriate subjects

for the study led to the idea for interviewing the doctors concerning how they identified

and diagnosed people in the early stages of AD.







Memos can assist in the development of an audit trail to substantiate

trustworthiness in qualitative research (Rodgers & Cowles, 1993). Even as the memoing

process begins during the joint collection, coding and analyzing of data, and peaks as

coding saturates, it is truly never over; it can continue on to provide ideas for later

research (Glaser, 1978).

Basic Social Process

Codes become saturated when the researcher realizes that all data can be

subsumed as an indicator of some category. It is at this point that selective coding can

begin, delimiting coding to only those variables that relate to the core variable and can be

used in a parsimonious theory (Glaser, 1978). The technique of constant comparison is

used to discover the core catagory that accounts for most of the variation in data and that

integrates the data, codes and memos. (Sandelowski, Davis & Harris. 1989). Criteria for a

core category include it's centrality to the categories generated; it must account for much

of the variation in the patterns of behavior. A core category must also reoccur frequently

in the data, relate or be connected with the other categories, have relevance or explanatory

power, and be completely variable in all conditions (Glaser, 1978). The core process that

emerged in this study was the concept of Identity work; it was the basic social

psychological process necessary to experience the work of EAD. Identity work included

the stages of Explanatory work, Recognition work and Disclosure work, which led

towards Confirmation work and the eventual acceptance of themselves as a person with

EAD.

Scientific Rigor

The typical positivist criteria of validity and reliability are not particularly

applicable to qualitative research (Altheide & Johnson, 1994); yet academic rigor can be





40

assured via other methods that contribute to trustworthiness. Glaser (1978) emphasized

criteria that included the fit of the theory (the categories generated must fit the data), the

relevance of the theory (it must allow core problems and processes to emerge without

forcing), the theories ability to work (does it explain, predict or interpret) and the

modifiability of the theory (from the addition of more data). Other qualitative research

criteria for scientific rigor include a theory that is conceptually dense (Strauss & Corbin,

1994).

This study fits Glaser's criteria (above), since the codes and subsequent categories

were generated from the research data, and they seemed to naturally fit this practice area

of early dementia care. The theory is relevant; the core process of Identity work and the

stages of Identity work emerged from the data. The theory also was able to explain what

was happening to people as they progressed in their AD, meeting the criteria of

workability. As to the idea of modifiability, this substantive theory of stages, conditions

and consequences of identity work could be modified as new/ additional data becomes

available from additional persons with EAD.

The published narratives that were used as additional sources of data for the stage

of confirmation work were considered a source of validity for the earlier stages of

Explanatory work, Recognition work and Disclosure work. The accounts by the Rev.

Davis, Dr. Henderson and Attorney Baron gave specific examples of their individual

struggles, beginning with their early questions and concerns regarding diagnosis in the

explanatory stage, to their similarities in experiencing the conditions for Recognition

work, as well as the barriers and consequences of this stage. Each of them was able to do

the Identity work requiring passage through Disclosure work towards Confirmation work.





41

Their stories were an affirmation for Identity work being a core process for the problem of

living with EAD.

I did attempt to obtain new participants, to use as verification for content validity,

but the same barriers were present as for the initial sample. For example, I recently gave a

talk on EAD, and shared with the audience that I was interested in any new participant

contacts. A lady approached, readily shared with me information regarding her diagnosis,

and gave me her phone number. I made multiple attempts to contact her, but she did not

return my calls. This presented a quandary do I continue to call and leave messages;

perhaps she was having second thoughts and did not wish the exposure, and further

attempts might be considered harassment, or perhaps she had forgotten who I was!

Auditability (reliability) is an essential component of any rigorous qualitative study

and an audit trail should assist the researcher greatly in maintaining the criteria of

trustworthiness (Rodgers & Cowles, 1993). The audit trail is maintained by the

researcher's careful and consistent recording of all data, including notes regarding method,

analysis/theory and personal issues and responses. A careful audit or decision trail should

allow others to follow the ideas and logic of how the study progressed. A careful audit

trail was maintained in this study, including all tapes, notes, and transcribed data; much of

this data was reviewed by my chairperson.

Morse (1986) stressed the sample must be such that it provides data that is

adequate and aropriate. Adequacy refers to the amount of data collected; adequacy of

data can be presumed when the data are saturated and no new categories emerge. The

sample size in this research was considered adequate as the data became saturated and no

new categories were emerging in the interviews; thus interviewing was halted.







Appropriateness (or fit) refers to the degree in which the method of sampling fits the

purpose of the study as determined by the research question. An appropriate sample will

allow for the selection of information according to the theoretical needs of the study and

the emerging model; it should provide insight and understanding to the problem. The

question can be asked do the concepts reflect / explain the situation under study?

(Hutchinson, 1993). As mentioned earlier, the published narratives supported the

theoretical model grounded in this present research. The following chapters present the

findings of the grounded theory research, answering the research questions initially posed

in chapter one.













CHAPTER 4
IDENTITY WORK IN EARLY AD- EXPLANATORY WORK AND RECOGNITION
WORK


In this research, the concept of Identity work emerged as the core process during

data analysis. Identity work concerned individuals with EML viewpoints of their

transformation of their sense of identity, and the work required to deal with the changes.

Analysis involved discovering the various dimensions of Identity work that an individual

experienced while living with EAD, including the work of initially recognizing and dealing

with the changing self, adjusting to the changing self, and moving towards living with, and

for some, accepting the progressive changes of EAD. The theoretical perspective in this

dissertation research included acknowledging the importance of the substantive theory of

awareness context (Glaser & Strauss, 1965), as well as seeking to develop a theory that

further articulated the significance of EML for individuals as they struggled to find

meaning in their cognitive and affective changes. This chapter focuses on the concept of

Identity work, the condition necessary for Identity work (open awareness context), the

first two stages of Identity work (Explanatory work and Recognition work), the

conditions for Recognition work, the diagnostic barriers to Recognition work, and the

social psychological consequences of Recognition work. The stages that are discussed in

this chapter and throughout the study are not necessarily lock step, occurring in a set

sequence; they do occur over time, may occur simultaneously, or they may occur over and

over again before the person can progress to the next stage in their Identity work process.





44

The phenomenon of work surfaced early in the analytical process as an organizing

framework to explain what happens as a person diagnosed with EAD adjusts to living with

the disease. The concept of work suggests an active involvement in a process, with an end

towards accomplishing something or attaining a goal. Work can have many components,

such as body, mind, and spirit work, it can be done individually or in groups. It contains

the suggestion of energy, which can be physical, as in the connotation of "hard work," it

can also suggest the use of psychic energy, such as in the social psychological work of

living with EAD. Work also denotes a process occurring over time, thus containing a

temporal aspect. The time trajectory can be a long and arduous one, such as that which

occurs when AD develops over many years. Work is an iterative process in individuals

with EAD, who vacillate back and forth in their minds about the reality and meaning of

their symptoms.

A few qualitative researchers have focused on the concept of work. Strauss et al.

(1984) used the notion of work in their classic book on the social organization of caring

for the chronically ill. In privileging the social and psychological aspects of chronic

disease over the medical, they enumerated the multiple tasks of coping with chronic illness

that the patient, the family and the health care workers face, and organized them into work

types, for example, crisis work, symptom control work, comfort work and ward work, to

name a few. Pinnick (1984) further elaborated on types of work in her study of

chronically ill children on a pediatric ward, identifying food procurement work, comfort

work, composure work and body work, and cautioning that nurses need to evaluate how

their own work impedes or facilitates patient's work.





45

Vittoria (1998) discussed the concept of identity work in a qualitative study of the

environment of an Alzheimer's unit. She described identity work from the perspective of

the staff's interaction with AD residents and their efforts at preserving the resident's sense

of self through efforts at social construction of positive resident identities. Saunders

(1998) examined the social construction of identity by older patients with later stage

dementia being evaluated in a memory disorder clinic. Their use of various account types

illustrate how they construct and reconstruct their identities in social interaction, in an

attempt to manage and protect their self image. Mathieson and Stain (1995) discussed

identity work from the perspective of the patient with cancer, and the meaning of their

identity altering illness within the context of organized social relationships, including the

medical system.

Identity work emerged as the core process with the most overall explanatory

power for describing the experiences of people with EAD. These individuals struggled

through a long and difficult disease course, as they gradually came to realize their memory

changes had great meaning for them, that they had probable EAD. This study discusses

how people with EML came to view their memory changes within a framework of a

changing identity.

Open Awareness Context. a Condition for Identity Work

Open awareness context (OAG) emerged as an important condition for Identity

work. The importance of being able to dialogue with the person early in the experience of

their memory changes made knowledge of the person's awareness context of fundamental

relevance to this research. Interviewing was a process of discovery and assessment of the

individual's awareness context. Ideally, persons with EML were in an open awareness







context, so that I could initiate the dialogue that could offer me insight into the changes

they were experiencing. Although not all people interviewed were in an open awareness

context, it was clearly the ideal state for the sharing of information regarding EML.

The original research on Awareness Context Theory with dying patients and their

caregivers identified four awareness contexts: closed awareness, suspected awareness,

mutual pretense awareness and open awareness (Glaser & Strauss, 1965). Closed

awareness context refers to persons having knowledge about a situation but being careful

not to divulge it to anyone. Suspected awareness context refers to an interaction in which

both participants suspect a particular condition. Mutual pretense awareness context refers

to participants having knowledge about a condition, but feigning ignorance. In open

awareness context, participants openly discuss the condition. It is important to emphasize

that mere awareness of EML changes does not coincide with an open awareness context;

in fact the person may work to conceal or reveal their EMIL changes, dependant on their

social interaction with others. Even if revealed, it requires dialogue with someone else to

become an open awareness context.

Awareness Context Theory was found to have relevance to social interactional

issues in early AD when nurse researchers used the emergent fit mode to build on the

theoretical application of Glaser and Strauss's previous work of Awareness Contexts

(Hutchinson, Leger-Krall & Wilson, 1997). The authors noted the importance of

awareness contexts as "phenomena that shape the social interaction in the experience of

early AD" (p.1407). They emphasized that it was not so much the awareness of the AD

that was crucial, but the awareness context surrounding and influencing the interactions

between the person with EML changes and their social world.





47

The majority of people with EML in this study were in varied awareness contexts

at the time of interview. For example, all participants were initially in closed awareness

context with their physicians, but were able to move into different contexts with other

people. Both Mr. M. and Ms. B. were in mutual pretense context with their spouses,

meaning each spouse in the relationship knew of the EML condition but did not discuss it.

Ms. B. stated "We don't talk about it, but he knows;" in fact it was her husband who

initiated the diagnostic visit to the neurologist, and he was present for her interview with

me. Mr. M. related that "I have confided in my wife but we don't discuss it;" rather they

gave their numerous other medical problems center stage. He and his children were also

in a mutual pretense context. He stated, "They know, but to be truthful we have not

discussed it." At one time, his out of town daughter called and shared with me her

knowledge of her father's EML condition, but also agreed that "it isn't something we talk

about." He used the opportunity of driving a neighbor, Ms. W., to the pharmacy to

move into an open awareness context. When she shared with him "I can't go without

taking my memory pills," he responded "I sure need some of those, I'm having a terrible

time with my memory." She encouraged him to join my early memory loss support group;

he subsequently came to the office to speak with me, sharing his recent changes in

memory and functioning, and stated "I sure appreciate being able to talk to someone

about this problem I'm having." This statement indicates how social interaction can be an

opportunity to move people with EML towards a different awareness context, and give

them the opportunity to begin the process of identity work identified in this research. It

also is an important example of how professionals can help guide patients in their





48

awareness contexts, an idea discussed by Glaser and Strauss (1965) regarding the power

of other people to "change or maintain a particular awareness context" (p. 270).

Both Ms. A. and Ms. W. were in open awareness context with their doctors and

their children, but were in mutual pretense context with their friends. Ms. W. stated "How

could they [friends] not know, they see me everyday." In turn, her neighbors and dinner

companions would frequently share with me "H. is having such problems, it's a shame, but

we just try to help her as best we can." Some, like Mr. H. and Ms. J., remained in closed

awareness context with their physician, family members and friends, even while fully

admitting to me their problems with memory, and the various compensatory strategies

they used. For example, Mr. H. was able to discuss his initial EML changes with me,

including the tremendous impact they had on his law practice. "I was lost and frustrated

and I was glad when I had to eventually give it up." However, he discounted the idea that

he had anything more than normal memory loss, because "my doctor said it was normal

aging."

Since none of the individual's interviewed for this research could recall a direct

diagnosis of EAD by their physician, (many were given the euphemism of memory

problems or memory changes) the condition of non-disclosure of a diagnosis makes it

easier for the person to remain hopeful, and discount their memory changes, or simply to

deny their EML changes have meaning beyond that of normal aging. For some, it is not

until their suspicions are aroused by further testing and workups, or the prescribing of

specific prescription drugs for their memory changes, that they begin to wonder. After

being evaluated for EAD and started on Aricept, Ms. F. acknowledged that "I did not ask

any questions," although she did admit to "wondering" about the implications of her





49

memory changes. She readily admitted to the EML changes, but for her the meaning of

these changes was to remain hidden and nonexistent. EML was a sign of aging, but not

indicative of a specific disease. She and her husband stated they did not discuss the EML

changes, and denied any functional problems for Ms. F.

An open awareness context, or any context that could lead to an open awareness

context (i.e. suspected awareness or mutual pretense context) was critical if people with

EML were to begin the process of "self work" necessary to address the changes of EAD.

Self work involved an initial dialogue with self, or thinking about themselves and their

situation. It involved the self reflective process discussed by Blumer (1969) as "...an

internalized social process in that the actor is interacting with himself'(p.5). Wanting to

do the self work was the first step in an awareness context that had the potential to

progress from closed, mutual pretense, or suspected awareness context, towards an open

awareness context.

Stages of Identily Work

Explanatory Work

Identity work occurred in degrees, over time, starting with the person's initial

efforts at developing early explanatory models for their EML. Explanatory work, the first

phase of Identity work, assisted them to begin sorting through various ideas of causation

for memory loss. Models in research are symbolic representations of an idea (Wilson &

Hutchinson, 1996) that assist us in explaining a concept to another person. An

explanatory model offers a theory of causation or a descriptive explanation for a

phenomenon. McSweeney, Allan, and Mayo (1997), building on the work of Kleinman,





50

discussed using explanatory models in their nursing research and practice as a mechanism

to link beliefs and behaviors, in an effort for persons to make sense of their illness.

Most of the participants in this research had an explanatory model for their initial

changes of EML. Some expressed conflicting ideas about whether or not they really had

EAD, and discussion of their ambivalence seemed to assist them in sorting out their ideas

and making initial sense of their EML changes. Most of the people interviewed and

chosen for this study did not continue with their initial self protective ideas but were able

to move on to further dialogue and eventually come to some sense of acceptance of their

EML changes, a fact I believe due in large part to interactions occurring in this research.

Some individuals initially expressed the idea that their changes were "no more

than normal aging all our friends have this problem." Ms. J. admitted to having EML,

but also seemed to take comfort in the fact that "my neighbor told me that all old people

have this problem and not to worry about it." She also medicalized her memory changes

by relating them to "dizziness and headaches." Some readily made a genetic connection,

remembering that "actually my mother was like this" but they would also offer other

explanations, such as "maybe I'm just not trying hard enough," or "your brain is a muscle

that needs exercise and I'm working on that." These people initially appeared to be

holding out hope that hard work and effort could overcome the changes they were

experiencing.

One husband of a person with EML attributed his wife's changes to "her lack of

paying attention... we remember what we are interested in." He further shared "she is not

really caring, she could do better if she tried." Ms. W. divulged her son's comments to

her on a recent visit "they tell me I have to remember." At one point, she also saw her







initial changes simply as "something I need to overcome, like bad behavior." These

family members were enforcing their belief that with effort comes improvement in

memory. They were not prepared to view the memory impaired person as someone with

a changing identity.

Ms. A. shared her varied explanations for her EML, while at the same time readily

admitting to "memory problems caused by Alzheimer's;"... "I think by the time you get to

our age, your mind has too many memories and we have experienced too much stress,

what with having to give up so much and move to a smaller place." She further opined,
"some memory loss is really self protective, especially if it is something sad or miserable

from your past. I think the Lord helps you to forget these things, don't you?" This

person had been a nationally renowned plant specialist/ nursery owner and she poignantly

expressed, "I think my problem is I miss my garden, digging in the soil and making things

grow, and I miss my pets running around in the yard." Perhaps she is suggesting that the

cumulative stresses and losses of life are causative factors for her EML. At another time,

Ms. A. was able to ask many questions concerning "brain changes" and "what really

causes this disease." In contrast, Mr. M.. did not have any suggestions regarding

causative factors for his EAD. Prior to entering the EML group, he was able to dialogue

with me at length, interchanging the words "memory problems" and "Alzheimer's" to

explain his condition. When asked why he was using the word "Alzheimer's" he stated "It

seems like that's what it is, doesn't it?" Both of these persons with EML were

interviewed prior to a formal diagnosis, but already attached significance to their memory

changes. In fact, many study participants acknowledged that their changes were more

than just forgetfulness. They expressed a concern about the changes, at times vacillating





52

and using other explanatory models as reasons for the changes, but always returning to "is

it moreT

Recognition Work

That the person with EML possessed a willingness to admit to early changes in

memory and functioning was a key criterion of the study. During analysis I asked, "what

are the conditions that allow some people with EML to recognize their changesT The

critical behavior at this point was for the person to question their changes in memory and

functioning. Recognition work, the second phase of Identity work, centered on the person

with EML being cognizant of the fact that something within themselves was wrong and

admitting that the changes were more than just the memory loss of aging. It was a critical

step at this stage for the person with EML to imbue these changes with meaning and

render their changes problematic.

Creating meaning is social, it emerges in and through social interaction (Jaffe &

Miller, 1994). For many, a crucial factor in creating meaning from these EML changes

was the current level of functional status for the individual. Many of the clients who very

early recognized the changes and sought answers were in highly functional roles; their

EML changes affected their ability to continue performing and interacting in an effective

manner. If finding meaning in their EML changes did not occur, then the person could not

progress to the next step of EML work.

Once people became more focused towards recognition of their EML changes,

some were able to advance slowly towards creating an identity of self with EAD, while a

few circumvented the idea, readily discussing doctor visits and pharmaceutical

prescriptions for memory changes but never stating a diagnosis. Crucial at this stage were





53

the conditions for Recognition work, which included an initial heightened self awareness,

which led to a questioning and dialogue with the self, an ability to monitor one's changes,

and the diagnostic process itself.

Conditions for Recoganition work

Increasing self- awareness. For the initial self recognition and acceptance of the

meaning of the EML changes to occur, a condition of increasing self awareness was

found to be requisite. The individuals who could admit to their EML experienced an

increased sensitivity to changes in self functioning; and this self awareness allowed them to

question their changes. Mr. H. stated "I'm clinical, so I kinda asked, what's happening

here?" They could admit to themselves that they noticed the changes in memory. For

many, this step allowed them to graduate to admitting to others their experience with

EML, leading to a possible diagnosis of EAD, and over time, the identity of oneself as a

person with EAD.

People with EML discussed noticing the early functional changes; they recognized

and were willing to admit to themselves that something was different. Many spoke of the

typical changes often discussed in the literature, for example, lost name recognition or

inability to remember phone numbers. One person stated, "I can't remember names of

family members when calling them; I have to list their names on a card and use it as a

prompt." Another person, new to a congregate senior living site, recognized the

consequences of this early stage change when he asked, "How can I form friendships ifI

can't even recall their names!" Mr. M. expressed frustration with word finding problems

and loss of concentration, "I can't remember the punch lines for the joke and I get lost in

conversation with friends, it's just easier to forget it." These early changes were already

more bothersome than benign forgetfulness; they were causing the loss of ability for





54

positive social interaction. For some of these people, it was easier to not bother keeping

in touch, or to avoid interactions altogether. Social withdrawal became a byproduct of

EML.

Memory changes for some persons had more meaning because they were still

engaged in activities in the public eye. Rev. V., a Presbyterian minister, had noted

significant changes in his functional abilities, especially since he had retired but was

continuing in a high powered consultant position. He stated that he knew his changes

were more than just memory problems, and he knew they affected his higher functioning

abilities, "I have no trouble remembering the bible information, it's the process thinking,

the problem solving that I have trouble with now." He shared that he had tried validating

his memory changes with his wife and coworkers, "they said I was fine, but I knew

better." He was aware of their efforts to ignore the problem rather than validate his

concerns and engage in open discussion, an example of a closed awareness context. An

attorney, Mr. H, noted that "during the final two years of my law practice I really began to

notice it. I would get up out of my chair with something on my mind but by the time I got

the judge's attention, I'd have forgotten." When asked if he thought the judge and others

noticed this, he stated "I think they thought I was stupid... like that guy isn't much of a

lawyer." These feelings of decreased self worth and awareness of his decreasing

functional abilities eventually forced him to close his practice. "I didn't feel like the client

was getting his money's worth."

Many were able to discuss the typical spatial, temporal and sensory changes

consistent with EAD. For example, Ms. H. spoke of getting lost while driving in familiar

surroundings and the resultant "feelings of frustration and fright," even articulating the







high risk consequences of these safety issues. Upon realizing she had been lost while

driving to the mall for her early morning walk, she asked "can you imagine what could

have happened to me if I hadn't found my way back?" She eventually gave up driving

significant distances. Two gentlemen admitted to noticing significant memory changes as

many as 10 years previous, and giving up their golf game because of the changes. One

stated "I gave up my golf game long ago because I knew something was wrong and I

couldn't keep up, names of new golf partners, scores, it was too much." Some people

articulated their changes in relation to sensory responses. Ms. B. expressed, "I sensed

something wrong, but it was difficult to grasp ... I just felt funny, things were leaving me, I

had less energy." One man stated "I know I'm not as sharp, I seem to be going

backwards."

These clients could express the early awareness ot and the significance of their

EML changes for their daily lives. The challenge is to have people recognize and act upon

these signal events early in the change process, in order for correct evaluation, diagnosis

and appropriate treatment to begin. The difficulty in this particular research was finding

people in the EML state that had the heightened self awareness and an awareness context

that allowed for diagnosis and support to occur.

Monitoring p onal changes. A second condition for recognition work was that

persons with EML who could admit that they were experiencing EAD were able to

discuss ways that they could monitor changes in their progression. By the process of

using personal markers (comparing their functional ability against previous capacities) and

comparative appraisals (comparing self against actions of others) as the gold standard,

they were able to evaluate their functioning and indirectly, their sense of self identity.







The use of personal markers are evident in the following examples. Ms. V.

proudly claimed that she could still cook without looking at a recipe, especially her prized

apple cake that she had been baking for years. Another took pride in the fact that she was

still able to memorize piano music. She stated, "I play for my self enjoyment and besides,

I know my brain still works ifI can continue to memorize pieces; in fact I think

memorizing helps make my brain stronger; it's a muscle you know." Some of the ladies

involved in the EAD support group still played bridge weekly and more than one was

heard to remark, "I had a good game this week so I guess I'm doing ok." Another lady

interjected, "success with my bridge game sustains me," and in fact it was often the

"high" she needed to continue on during the week. These women were reassured by the

belief that success breeds success.

Comparative appraisals assisted some individuals to feel better about themselves.

Ms. B. took strength from knowing she was not the only person trying to function with

the problem of memory loss. She stated "if others can deal with this then I can too." One

lady compared her ability to play cards by evaluating herself against her friends

competence in card playing. "I have to be able to keep up with them and they are good."

In the same conversation she admitted to doing "foolish things" now, which reinforced her

understanding that she has a memory problem.

Comparative appraisals can also leave the person who does the comparison

wanting. One lady in the group compared herself to her neighbor who also has EAD. She

remarked, "you are doing so much better than I am," and complemented him on his

organizational skills. She explained her theory that he was making use of his past

organizational skills from his background in the business world and this assisted him now

in coping with his EAD changes. However, this particular lady had also been a business







professional and at one time probably had the same organizational skills. During the

group, another lady remarked to a neighbor, "I never would have known you had any

memory problems like me, you seem so fine." These comments further elaborate the

hidden quality of the signs and symptoms of EAD, allowing the person with EAD to

vacillate in their work stages, perhaps even reverting back to explanatory work, revealing

the fluid nature of these stages.

Seeking answers. A third condition necessary for recognition work evolved

around the diagnostic process itself. Individuals with EML changes must recognize that

their changes have significance in order for them to present their concerns to a health care

professional for investigation. They must be willing to seek answers for their troubling

behaviors. For many persons with EMIL, their families initiate the visit for diagnosis as the

changes become undeniable. Much focus in the literature has already been placed on the

family's perspective and role in the diagnostic process. For this study, however, the

patient's perspective was sought for people with EML very early in the change process of

probable EAD. Just as the patient must recognize the significance of their early changes in

memory and functioning, so also must the physician and other health care professionals be

cognizant of the significance of these reported functional changes. Crucial at this point is

the attitude of the diagnosticians towards listening to the person and giving credence to

their concerns. In fact, at this point the clinician can be a critical motivator in moving the

client towards a more open awareness context.

Varied avenues of diagnosis existed for the people with EML in this study. Some

actively sought input from their physicians, stating their EML changes were the trigger to

seek help. Rev. V., the minister, had noted changes many years previously but "back then





58

I figured then I was just getting older." As the EML changes became more persistent, he

mentioned this problem to the doctor, but was told to "wait and see." When he mentioned

the EML changes again on his next annual visit "my doctor said since this is the second

time you mentioned it, I guess we can do some testing." He acknowledged "my memory

changes are what drove me to the doctors that time."

Some were able to share their changes with a close friend who then encouraged

them to receive further evaluation and assistance. Mr. M., a retired salesman stated "It

wasn't a physical or a medical problem, so I saw no need to share it with the doctor ... I

had enough heart problems and things to worry him [the doctor] with." When questioned

further for the reason he did not share this change with his doctor, he stated "I didn't think

that this was the kind of thing that you bothered the doctor with." This particular

gentleman was able to share his EML with a neighbor who had the same problems, and it

was she who referred him to this study, and I in turn referred him to his primary physician.

Some people who possessed the initial recognition of symptoms needed further

prompting by health care professionals to assist them in realizing the significance of the

changes. Ms. A, a retired nurse, was aware of her problems with forgetfulness; she was

even able to use the term "early memory loss" as a self diagnostic label for her problems.

She was seen carrying around a copy of a recent Newsweek magazine with a cover story

on Alzheimer's, perhaps gleaning information and diagnostic terms from this. When she

spoke with me concerning her memory changes, she shared that "I wouldn't think of

discussing EML with my doctor." When it was suggested during our interview that she

might have a significant problem, she voiced her amazement, stating "Do you really think

this [memory changes] is a problem?" When her sons actually initiated taking her to the





59

physician for the assessment and workup, Ms. A. acknowledged that the confirmation of

her diagnosis "came as a blow." Perhaps it was the official validation that was so

devastating, because she had been telling me for months "there is something wrong with

me." When asked, she did not remember dialoging on that day with her doctor regarding

the EML changes, she just remembered that "my sons were with me in this meeting about

my life ... and she [doctor] gave me a new pill." These stories confirm the perception that

some people are not trying to deny their symptoms; they simply believe that only medical

problems are of interest to doctors, and they do not perceive memory changes as

"medicar' or a reportable symptom.

Some did not initiate the encounter for diagnosis, waiting for a family caregiver or

family doctor to initiate the conversation, but then readily participated in the dialogue.

Ms. F. admitted that it was her doctor who initially noticed her changes and then validated

these changes with her and her husband during an office visit. She was evaluated and

started on drug treatment (Aricept). In this case her physician knew her well enough to

notice slight changes in functioning, and was proactive in seeking a cause. Both of the F's

expressed great comfort that their physician "knew her well and knew what he was

doing."

Some individuals were "put on diagnostic hold" by their physicians, not receiving a

definitive diagnosis so they assumed other causes for their EML until it was too late in the

disease process for open interaction. Mr. H., the attorney, shared his experience of being

tested at a large research and diagnostic center. "I went through some tests, I think G

[wife] was concerned whether there was any disease factor involved or if it was just a

normal memory loss. As near as I can recall they said no 'disease'." His wife shared with







me, 'I was furious, as it left [husband] thinking nothing was wrong with him, and more

importantly he could have been put on Aricept much earlier in his disease process." A

number of people with EML and their families in this study shared the same process of

being told a "non diagnosis," and/or being asked to "wait and see" if symptoms

progressed. Families were often given the Alzheimer's diagnosis much later in the disease

process, when EMIL changes were quite obvious, but the person with EML's ability to

meaningfully interact was lost. Since the doctors never discussed the possibility of

Alzheimer's, the clients with the EMIL changes were left in a diagnostic limbo, unable to

benefit from dialogue and the work process described in this research.

Ms. W. was acutely aware of her EAD changes and had been in an open awareness

context with most people for some time; however her physician was not as open with her

as she wished. She expressed exasperation after one visit to her family practice doctor,

complaining that he focused on how well she was doing. "He said, H., you should be

proud of how well you are doing" but, she continued, "that doesn't give me a memory!"

Perhaps she was looking for support for her memory changes, and she felt that he focused

only on her physical status. Perhaps he was minimizing her memory problems, not to be

insensitive but to accentuate the positive. The end result, however, was her frustration

with his inability or unwillingness to dialogue with her about her memory changes.

Again, awareness context was an important condition for diagnosis. For some

persons, especially if they were in an open or suspected awareness context, the diagnostic

process confirmed their initial suspicions. For others, it was the signal event for their

recognition of the severity of the problem; still for others it was simply permission to

continue in a phase of closed awareness context. The consequences of continuing in a





61

closed or mutual pretense context is that the diagnosis is not pursued and the person with

EML remains uncertain about the cause of their EML.

Diagnostic barriers to Recognition work

What should the role of the physician or health care practitioner be in the

diagnostic process, the process that could possibly confirm EAD and assist the patient in

moving towards the process of recognition work? If diagnosed, when and how should the

person be told about probable EAD? The American Association for Geriatric Psychiatry,

the Alzheimer's Association, and the American Geriatrics Society compiled a consensus

statement, stressing the importance of early evaluation and accurate diagnosis (Smalls,

Rabins & Barry 1997). However, many barriers still exist to the diagnosis of memory

problems which are true dementias. Some studies suggest that the under diagnosis of

dementia might be as great as 50% (Callahan, Hendrie, & Tierney, 1995; Doraiswamy,

Steffens, Pitchumoni & Tabrizi, 1998). Barriers to correct identification of this group of

clients include failure of physicians to recognize and respond to dementia symptoms,

perceived lack of need to determine a specific diagnosis, limited time for evaluation, and

negative attitudes on the part of the diagnosticians towards the assessment and diagnosis

of EAD (Boise, Camicioli, Morgan, Rose & Congleton, 1999).

In an effort to better understand the reasons that primary care physicians do not

diagnose people early in the dementia process, 5 primary care physicians specializing in the

care of the elderly were interviewed as a subsample of this study. Each of these physicians

had a significant geriatric practice, and were well versed in the care of this population.

When comparing the diagnosis of AD to other medical diagnoses of aging, few of

these physicians felt that anyone gave the diagnosis of AD much attention or priority. One







doctor shared that "the disease is too elusive, too insidious and too unpredictable,"

emphasizing that the very nature of the disease itself interferes with an accurate diagnostic.

He compared AD with heart disease with its well known risk factors, symptomology, and

treatment protocols. He went on to say, "Alzheimer's is very negative, it's like a big

cloud out there that we still are not grasping."

All the physicians did the initial diagnostic workup for suspected AD in their

office, only referring to a neurologist if the patient presented as "something different, like

very rapid or progressive changes," "something I'm not sure of," or "if the family wants a

second opinion." One noted geriatrician discussed neurology referrals. "No, it's not cost

effective, it takes 3 4 hours, it's a very labor intensive exam and it's difficult for the

patient with dementia to tolerate this." This is an interesting comment because most

elders routinely receive referrals to specialists for many of their other chronic illnesses,

including cancer, coronary artery disease and urology problems. Perhaps the physicians

are attempting to "protect" the patient from an accurate diagnosis, suggesting that the

diagnostic process is too traumatic, related to the social stigma discussed below.

Consistent with the Boise et al. (1999) study, none of these physicians felt that a

real priority could be placed on AD diagnosis until more effective treatments options were

available to patients and their flnilies. As one long time practitioner stated, "When it

deals with the glory of medicine, the gratification of a cure, there is a lot of that. If there

isn't hope for a cure, then people tend to look at other things." These doctors were

expressing the social contextual values of medicine, which are centered on curative

factors. If cure is not a possibility, then many practitioners simply minimize the problem

of AD until behavioral symptoms emerge later in the disease process and require

management. By this time, the patient and their families are often in crisis. One doctor





63

succinctly voiced what appeared to be a common condition for diagnosis to occur when he

stated, "For us to have an interest to diagnose them early, we need to have something we

can do."

What makes the physician initially suspect a memory problem and what are the

signs they look for? When does a symptom (i.e. memory loss) become a sign of a disease

(i.e. EAD)? Some of the physicians stated they could pick up diagnostic clues during the

office visit, for example, a patient's hesitancy in answering questions. Dr. A. stated that

he watches for hints while taking the history and physical. "I ask them questions about a

scar, or what medicines they take, if they hesitate or look to their family for coaching, I

know there is a problem." Dr. M. stated, "rarely does a patient come in and self report, a

family member usually clues me in first ... and they tell me in secret, so I have to be careful

not to divulge to the patient what I know." He felt he was walking a careful line of trying

to diagnose the patient and have them discuss memory problems while not revealing the

source of his information.

All the physicians cited similar social structural barriers to the diagnostic process,

including temporal issues and concerns of stigma. The temporal barrier of "lack of

allotted diagnostic time" was especially pertinent if the person did not present with specific

memory loss complaints. As one doctor stated "Medicare pays [only] for the chief

complaint, so unless they come in stating they have that problem, and mostly they don't,

then the whole organization is focused on the chief complaint." These physicians were

commenting on the current social organization of medical care delivery, which emphasizes

the reimbursement system rather than the person with the problem. Another temporal

issue concerns the insidious nature of the disease itself. As Dr. M. stated, "It's not like





64

someone walking down the street experiences chest pain and boom, you go to the ER and

you know right then ... this other thing [EAD] kind of comes and goes, waxes and wanes

over time, you have good days and bad days..." The problem becomes one of knowing

when to pursue the symptom, for example, when does the memory change become

significant enough to require further diagnostic testing? Perhaps the patient experiences

symptoms that are not of significance to them at the time, and /or the symptoms are so

varied and hidden so as to not arouse suspicions, thus they are easily ignored. The

problem is compounded by the hidden nature of the symptoms, and the patients'

discounting of their changes discussed in the previous section.

All of the physicians spoke of the social stigma of the AD diagnosis as a barrier to

early AD diagnosis. There was a strong sense that no one, neither the physician nor the

patient, discusses this disease unless forced to. One doctor used the comparative analogy

of an AD diagnosis to "people coming out," paralleling the stigma of being gay to that of

dementia. He also discussed how famous people such as President Reagan admitting to

AD helped the cause of early detection and diagnosis, again much like famous people

acted as "cause celebs" early on in the gay movement. He further went on to discuss the

"triple jeopardy of aging, mental illness and a dementia," stating "there is no glory, and

lots of fear, with this diagnosis."

None of the interviewed physicians routinely screened for memory changes. Dr.

0. stated, "It's interesting, we screen for hypertension every time someone comes in, [by

taking blood pressures] but we don't routinely screen for dementia, so we don't pick up a

lot of people." Dr. Mc., a female family practitioner, was holding out hope for the

efficacy of Aricept before she began routine screenings for EML. "If there is nothing that





65

can be done for it, than no .... because the diagnosis is so devastating. But if Aricept does

what it is supposed to, then yes, screening is warranted." All the physicians mentioned

the issue of nonpayment for screenings. Dr. A. stated "... you have to deal with the simple

fact that Medicare and other payors don't reimburse for screening for dementia, ...so we

don't actively pursue it unless it's brought to us," meaning the patient or family member

must present with memory loss as a focused complaint. Of course, this lack of screening

in general medical practice is contrary to the consensus that early evaluation and accurate

diagnosis of AD are critical to improved outcomes in this population. One study that

looked at the issue of under diagnosis of dementia in general practice suggested that when

a physician has an established relationship with a patient, he/she needs only to take a few

minutes to use brief cognitive tests and ask a few questions of relatives regarding

functional abilities, which would "improve their diagnostic accuracy considerably"

(O'Connor, Pollitt, Hyde, Brook, Reiss, & Roth, 1988).

All the physicians mentioned the importance of the family and the need for social

support for the patient and the caregiver. Yet this focus on the need for social support did

not translate easily to the typical medical model of practice. The lack of social structural

supports, and the fact that diseases such as EAD require a biopsychosocial approach to

care was evident in many of their statements. Dr. M. spoke passionately about the need

for a supportive network to assist physicians working with EAD patients and their

families. "I can't tell you how many times that I had a hard time saying, ok, this is what

happens but I can't tell you where you can go ...I ended up calling [the hospital social

worker] and saying "what is out there?" Again he compared the lack of resources readily

available in the community for the AD population to what is available for the AIDS







population, citing that the HIV community has pulled together a cohesive network of

community support that other groups could emulate.

Another physician stated he was not even aware of what the Alzheimer's

Association could offer, or even that there was such an organization locally. Others knew

of the organization and had pamphlets to give to people but no real time to spend with

families and clients to explore the best care options. My own experience with a family

member with AD was to have a physician offer nursing home care as "the best option"

after the initial diagnostic visit! It was I who shared with him our preference for adult day

care and other in- home options until long term care was necessary. One physician, Dr.

B., seemed quite focused on the emotional needs of the caregiver, stating that he uses the

office visit time as an opportunity to teach and listen "because they get very caught in 24

hours a day care taking and before you know it they don't have a life. They're unhappy

and care needs to be given to the care giver." He allows them time to talk and ventilate,

acting as teacher and advocate. None of the physicians mentioned the emotional needs of

the EAD client, another important focus of this particular research.

Social pEscholocal conseqtuences of Recognition work

Many people could readily articulate the social psychological consequences of

recognition work regarding their EML. They spoke of being embarrassed, frustrated,

irritated with themselves, and self critical. For many of them, their response was to

withdraw, immobilize, and "feel frustrated," "helpless" and "not in control." Mr. M.

stated, "I have flashes of frustration, especially when I'm driving and I realize I don't

know where I am." He voiced concerns which indicated his awareness of the resultant

safety issue of continued driving.







Mr. B, who had early age onset AD, shared that his initial memory problems

caused frustration, especially in his relationship with his wife. This client was especially

apprehensive because his father had been diagnosed with early age onset dementia and had

died at a young age. He stated that because of this familial history he became more

fatalistic in outlook and depressed to the point of being suicidal. He expressed that his

diagnosis caused him "apprehension to the point of shear terror."

In contrast to those who responded to their EML changes, the issue of memory

change and loss seemed to be a nonevent/nonissue for one woman. She would vacillate

in her admission, and only occasionally in the context of a support group would she would

admit to changes. At one point she did acknowledge" it's the hardest thing to admit" and

shared "it sometimes makes me feel bad." In another group session she recalled a

conversation she had with another group participant, where she agreed she was "not as

capable as 2 years ago." Perhaps this opportunity to connect with someone and find a

commonality was enough to allow her open and honest expression. Her lapses into denial

could simply be attempts at self preservation, or, possibly, her disease progression was

able to ameliorate any frustrations.

Another client stated, "At first I just tried to ignore it and keep on" but after her

physician diagnosed her as probable EAD and gave her a prescription she stated, "I just

trust in the Lord's will and use plenty of prayer." She spoke of accepting the changes of

the disease but still expressed the hope that she could maintain some normalcy. She

adapted to her changes by choosing a lower level of involvement in her community

volunteering, and was able to express satisfaction that this was the correct decision for

her.







Smmary

This chapter identified the core concept of identity work for people with EML, and

the importance of the condition of an open awareness context. It included discussion of

Explanatory work and Recognition work, the first two stages of Identity work.

Conditions necessary for Recognition work included increasing self awareness, monitoring

personal changes, and seeking answers for their changes via the diagnostic process.

Diagnostic barriers to Identity work were identified, as well as consequences of

Recognition work. For most people, Recognition work required effort for them to come

to know they had a problem with EML and probable EAD. With an increasing self

awareness, monitoring the changes in self, and seeking reasons for the changes, they

worked to understand what was happening to them. The gradually developing awareness

initiated a changing identity and led to the need for Disclosure work, involving disclosing

the meaning of EML to others, discussed in the next chapter.













CHAPTER 5
DISCLOSURE WORK


The previous chapter explicated the core process of Identity work, and the initial

stages of Explanatory work and Recognition work, the latter involving the beginning of

acknowledgment of the meaning of EML to the self. Recognition work set the stage for

Disclosure work because it elicited concerns such as, "can I measure up," or "can I

function?" This next stage of Disclosure work involves revealing the meaning of EML to

others. The continuum of Disclosure work involves nondisclosure, selective disclosure,

and finally, open disclosure. Emotion work was required throughout this disclosure

continuum as participants dealt with their increasing vulnerability. Initially, participants

had as a goal nondisclosure, and aimed their efforts at masking, or saving face, because, as

they realized their EAD was intensifying, they expended increasing efforts to conceal the

progression. With time and disease continuance, some participants gradually confided

their changes to flanily and friends through a process of selective disclosure. Subsequent

open disclosure, either deliberate or inadvertent, resulted in revealing EAD, and, often,

losing face. Losing ftce frequently strained the relationships between family and friends,

unveiling the emotion work fundamental to this stage of Identity work.

MacRae (1998), building on the earlier work of Hochschild, discussed emotion

work from the perspective of the caregiver, showing the human costs of caregiving work.

The former author described emotion work as "...the type of work it takes to cope with

feeling rules" which in turn "guide emotion work" (p. 142) and how failure of emotion

69







management negatively affected the caregiver's sense of self. While these and other

studies focused on caregiving as emotion work, there were no studies found which

discussed the concept of emotion work from the perspective of the person with EAD.

Keady and Nolan (1995a) did interview 10 early dementia sufferer's, assessing their

strategies on coping and compiling their accounts into the Index for Managing Memory

Loss (IMMEL), a tool useful for gauging the coping responses used by persons with

EAD.

Emotion work in this study can be described as the intense psychological work

necessary to adjust to the changes of EAD, and subsequent living with the diagnosis.

Emotional pain surfaced as the participants attempted to come to grips with their losses.

It was emotionally stressful and challenging to keep the secret of EML, and tension

escalated as the ability to maintain their secret broke down and disclosure of their EML

loomed as an immediate threat. Awareness of the Emotion work involved in planning and

executing covering strategies surfaced through the participants' stories of compensatory

behavior. Early in Disclosure work, the participants described the emotional challenge of

keeping their EML secret, followed by the stress involved in selectively revealing their

secret, and finally the flood of emotions and upheaval associated with open disclosure,

especially forced disclosure. The element of Emotion work inherent in Disclosure work

assists in understanding the person with EAD's increasing need to manage their emotions

in response to their actions and interactions as they cope with their loss and decline in their

changing sense of self.







Nondisclosure Maintaining Secrecy to Save Face

The goal of secrecy became especially evident as covering increased, requiring

much psychic energy. Many people described the intense efforts required to cover and

hide their worsening disabilities by employing the use of secrecy. Bok (1989) discussed

secrecy as "a related set of tensions: between concealing and revealing..." (p.36). She

suggested secrecy functions as a "safety valve" between privacy and openness. At a later

point, some people were able to disclose their EML changes to others, but at this point in

their disclosure work, most admitted to embracing the goal of "concealment, or hiding ...

the defining trait of secrecy" (Bok, 1989, p. 6). Ms. J. admitted to the use of secretive

behavior when she expressed, "I don't discuss this with anyone ... there's not much they

can do anyhow." Ms. V. also admitted, during a discussion with the EML group, "you

do not talk about it." Acting in her usual mode of mutual pretense awareness context, she

also stated she would not consider sharing her changes of EML with others, since "I don't

know if they are trustworthy." At this point in their disease, these efforts at secrecy and

concealment act as a protective mantel, and are effective as long as the person can

maintain the techniques of impression management. Many were able to verbalize their

efforts at nondisclosure. Mr. H. stated, "I didn't choose to advertise it, I'm concealing my

disability ." Mr. T. admitted to the negative repercussions of exposure when he said,

"You can't tell others, it would be too costly in terms of my job." For some persons with

EAD, the fear of exposure affected their self image. Ms. V. admitted that her fear of not

doing something right often led to "not doing some things at all;" Ms. A. also admitted to

fear of ridicule with exposure of her EAD changes.







In another support group (Alzheimer's Association, 1995a), participants

consciously maintained secrecy, since, in EAD, one can often still deliberately choose

effective strategies to assure success. One women stated, "...to me, succeeding with this

disease was always keeping a smile on my face, [and seeing] how many people I could

keep this from, because the last thing I wanted was sympathy, and that's what I always

ended up getting." A gentleman, still engaged in sales, stated in response, "You ask

whether I tell business people [about EML]. I do a lot of advising, how to do this in

business, how to do that. And no, I don't tell them, then they would have no fidth in me."

A family member attending a support group that I offer for family caregivers, shared with

the others, "her [wife's] doctor told us not to tell people she has this dementia, since she

still can function quite well in social situations." The temporal nature of EAD, with it's

slow onset and progression, would appear to give direction to people as to the timing of

disclosure. Unlike a disease with a sudden onset, in the early stage there is time to think,

consider consequences and use compensatory strategies in an effort to maintain the goal of

secrecy for as long as possible.

Use of Covering Strategies to Maintain Non Disclosure

Before individuals with EML could begin sharing their EML changes with others,

their ability to function in the world had to begin changing and declining, and they had to

be willing to admit these changes to themselves. Even though changing functional

patterns were noted by people with EML in the explanatory and recognition stages

described in Chapter 4, the individuals now described intensifying efforts to deal with

their increasing decline. It was at this time that the social interactional strategy of

covering was increasingly used in an attempt to maintain their secret and deflect the





73

meaning of the changes to others. Many participants with EML freely discussed using this

strategy, which was compensatory in nature and helpful for persons as they tried to pass as

normal.

Goffinan (1959) wrote extensively about the scenarios which take place as

individuals with abnormalities interact, and the interpretation of these actions by others.

He elaborated on the person's need to control "performance disruptions" through

"impression management techniques"such as with the use of compensatory strategies. For

example, when the person with EAD can no longer sustain the expected interactional

norms, they often use increased efforts to "cover" in an attempt to "pass" as normal

(Goffman,1963). Aware of the stigma attached to their changes, and the subsequent

consequences from these changed interactions, the person becomes more guarded in

his/her interactions with others. As the following examples illustrate, people with EML in

this phase of their identity work were aware of their lapses, and made every attempt to

hide their problem.

For many, the resultant functional problems that developed from EML, and the

increased stress from the use of compensatory strategies was especially evident if the

person was still engaged with others while working in a professional capacity. Rev. V., a

retired minister, was still working as a consultant; Mr. H. related the problems he

experienced while trying to maintain his law practice; and Mr. T. shared his dilemma of

trying to continue working as a technical engineer. Each told how they developed

adaptive strategies by managing their environment differently, in order to survive. They

described how they knew their sense of self and their interaction with their world was

deteriorating. They were able to recognize their "changing self" and respond







appropriately, even if only for a brief period of time. The strategies were creative and

specific to the persons' perceived deficit, and there were as many types of covering

strategies as there were different situations:

Getting help from others

The minister consultant missed the previous "structure" that his office provided.

He recognized that "all the things that could keep me straight, like calendars and a

secretary to remind me, are all gone now and those things helped.... I try to cover it up

but inside I'm scrambling." He developed specific strategies to cope with these losses,

(i.e. delegating to others, telling others close to him, and asking for help). He was aware

of the loss of his abilities in the higher level cognitive functioning areas such as "problem

solving" or "putting things together," and he expressed that he knew that he must now

"plan in advance," and even faced the possibility of retiring.

Writing down, looking up

For some individuals, job performance was affected because of the work effort

involved in developing compensatory tactics. The attorney shared his difficulties of trying

to listen to comments from the opposing attorney or directions from the judge. "To the

extent that I could take notes, I could then refer to them but it was difficult because

people were talking fast and I couldn't take notes, then I couldn't remember what was

said. When I got up to cross examine, it wasn't there, I was lost." The technical engineer

admitted that he began to forget verbal instructions, especially the steps involved in the

sequencing of procedures. He noted that he was more inattentive and had to compensate

by an elaborate system of writing down the instructions, then transposing the information





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to audio tapes, then making notes from the tapes. The strategies became "exhausting" and

finally "unmanageable;" eventually he lost his job.

For those not actively employed, various strategies were still required for them to

continue to function independently. Ms. J. demonstrated how she wrote everything down

on multiple calendars. She also summarized her conversations in mini-notes to act as a

memory aide, "if you forget it, it doesn't come back ... writing it down allows me to

forget it and be at peace." She stated she was "aware that this is different than regular

memory loss" and consequently "I have enough sense to not get involved in anything

legal ... I know I would need the help of someone trustworthy." Ms. H. also admitted to

keeping multiple calendars, one with summary notes of daily activities on it, one for

appointments, and one for "anything extra." For these women, the multiple calendars

became a visible and symbolic replacement for their loss of memory.

Emotion work emerged as people shared the increased tension in this phase,

resulting from their cycle of ever increasing failures, and the continual need to cover by

producing creative responses to their deteriorating memory. Interactions with family and

friends were especially stressful as the person with EML could be easily "found out,"

particularly as they began to forget basic information like names for finily and friends.

Mr. M. kept these names and phone numbers in his wallet for "handy reference." He also

frequently found himself rushing back to his apartment to look up friends' names in his

housing directory, especially after immediately passing them in the hall and being unable to

remember their names. His voice tone conveyed his stress and frustration with these

necessary strategies, especially with their increasing occurrence; "every time I pass

someone in the hall I have to come home and look up their names, this is no way to live!"







Both Mr. H. and Mr. T. wrote the names of their grandchildren and family members in

their rolodex to use as hidden reminders as they were speaking to them, and several

people discussed the common strategy of writing "everything down in multiple places."

Two of the gentlemen discussed their increasing reliance on maps to continue

driving around a familiar city. Mr. T. stated, "I really feel in control when I know I can

stop and use my map as a backup, then I don't have to depend on anyone to take me

places. I still feel safe and so far it is working." Mr. H. was actually able to drive himself

to our first scheduled interview without any difficulties, stating he had "written directions,

and a map as a backup, which I didn't need to use." The use of familiar strategies, like

using a map as if they were in a strange city, gave these gentlemen a sense of continued

involvement and self reliance. Mr. M. also admitted to changes in his driving ability when

he stated "I don't feel in complete control." He voiced his need to "concentrate and be

more alert," a compensatory strategy that continues to work for him in his early stage of

EAD.

Bluffing

As functioning progressively worsened, developing complex strategies became

necessary to survive. Mr. T. used his previous verbal skills, "I bull my way through."

Mr. M. also used his verbal skills, with his approach of "telling jokes" to cover, while

stating "if I can remember the punch lines." Ms. F. shared with amusement that she

specifically allowed herself to memorize the responses to the "test questions" [MMSE]

asked by the neurologist and took great delight in giving the correct responses on the

follow up visit; her husband verified that she in fact did this. Ms. A. confided that she was

able to "fool her son" regarding taking her daily medicines. When he called her to ask if





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she had taken the medicines, she replied in the affirmative, and then used this cue to take

her pills. She admitted to this being "a little white lie;" she was strategizing to cover

herself. She also proudly related a clever strategy to cover her problem of forgetting

names in conversations; "I ask them, how do you spell your name?" She believed this

allowed her the ability for continued interaction while covering her forgetfulness.

Self correcting errors

Two of the respondents had been librarians and were quite aware of their early

efforts to compensate and "cover up mistakes" in an arena of work that required

perfection. Ms. H. said, "When it was quiet and I was able to think about it, I could fix

the problems and no one would see." The husband of Ms. E., the other librarian, shared

that "her coworkers told me later that they were finding lots of whiteout being used on the

cards and that just wasn't like her, she used to be perfect at that job."

Avoiding by using the sick role

Some participants chose to hide behind the sick role, since this role is socially

acceptable and can be useful in avoiding interactions. Mr. M. stated that he began to

avoid the early morning walks with the guys in his retirement complex by using the excuse

that he was the caregiver for his sick wife, even though he had a home health aide in to

perform the heavy "bed and body work" (Gubriun, 1975) each morning. Mr. H. used his

chronic bad back as a reason to give up his law practice, when in reality it was the excuse

he needed to close his practice. He shared, "the hospital stay, along with the recuperation

made it difficult to get back with any continuity to the practice so I closed it out and I've

always been glad that I did. I really shouldn't have been practicing law probably as long

as I was because of the memory thing." Ms. W. at one point related her new onset







problems with reading to "aging eye problems" but later admitted that the problem was

more; it was a difficulty with concentration. Mr. M. also admitted to the same problems

with reading and concentration, finally conceding his problem had more to do with

memory changes.

At this stage in their disease, it was evident that the recognition work done in the

earlier phase allowed people with probable EAD to make use of their increased awareness,

and this insight allowed them to use compensatory strategies to focus on important tasks,

such as driving. Since the typical story ones hears regarding AD and driving is that the

person just drives until he/she is "lost or out of gas," these stories show us how the

creative use of personal strategies allows individuals with EAD to facilitate their abilities

early in the disease process.

For each of these participants, preplanning ways to cover for their changes was an

important social interactional strategy necessary to continue functioning with EML. The

ability to compensate and self correct early in the disease and thus attempt to hide the

functional changes was evident, but the effort involved became more difficult with disease

progression. Exposure of their EML to others became a real threat of continued

interaction. As Goffinan (1959) expressed, performance disruptions have real

consequences at the level of interaction; such that "life may not be much of a gamble, but

interaction is" (pg. 243).

At this juncture in their disease process, some person's with EML were able to

begin the necessary step toward identifying themselves as persons with EAD. Again, an

open awareness context was central to persons being able to progress to this step. If

family members and/or physicians were in a closed awareness or mutual pretense







awareness context, then persons with EML were not encouraged to progress to the next

step of Identity work.

Selective Disclosure Assistance From Others

People desired to "name" their EAD changes; they also experienced increased

tension from attempts to prevent inadvertent self disclosure. This increase in Emotion

work, and the drive to search for a cause of their changing symptoms, eventually allowed

for selective disclosure to others. The process of disclosure can be considered a type of

social work, occurring in response to social interaction. Since the self is constructed

through social interaction, and people derive meaning from these interactions, many

persons with EML recognized the changes in themselves and reacted to them in response

to others. Timko and Moos (1991), in analyzing various dimensions of social climate,

found that increased self disclosure, in interaction with others, to be a construct of

personal growth. For many in this study, the concept of self disclosure through interaction

encouraged persons with EML in their work of admitting to the disease of EAD and to a

changing identity. Conditions that facilitated the self disclosure process included the

group process, the opportunity to talk with an interested professional, and interaction with

friends.

Group Process

In an effort to interact with people who were experiencing the early stages of

memory loss, I initiated a time limited, closed support group in a religiously affiliated

retirement complex. Four people with EML agreed to dialogue about their condition,

meeting bi-weekly for six sessions in a semistructured format focused on issues of concern

to all. The participants initially shared comments such as "I don't think we would have

ever known that the other people in the room were having the same problem as us."





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Their difficulties remained well hidden at this early stage and were simple to cover, thus it

was easy to maintain a closed or mutual pretense awareness context with others, until the

person felt safe to disclose their changes. It became apparent that the group process was

therapeutic for these participants, as some shared that they were talking for the first time

about the changes happening to them and the effects of their interactions with others. Ms.

W. stated, "I think it's (BAD] terrible and hard to admit to. But I think once you admit it,

you can say it out loud and you say it to somebody else, you don't feel as badly. This is

what I have done." Mr. M. admitted, "Well, frankly I didn't really pay too much attention

to it [memory problems] till H. was telling us [he and wife] about it and then I told H, well

you're not the only one that has memory problems I have them too".

Yale (1991), credited with starting the first early stage support groups for patients

with EAD, stated that support groups allow for "anticipatory grieving for the losses and

planning for changes which the disease will render" (p. 1) and have the effect of a "mental

health intervention" (p. 2). Keady and Nolan (1995b) found that "not all early sufferer's

wanted to continually share their experiences with family and friends, and would have

valued a confidante who was less intensively and personally involved" (p. 378). In this

study, the group process allowed and even facilitated some participants to progress to an

open awareness, and an admission of their EML problems. During the remaining sessions,

those able to continue on the path towards an open awareness context experienced the

benefits of interpersonal sharing, which translated into personal growth and acceptance.

Availability of a Professional

I ran an ad in the newsletter for the senior retirement facility where my office is

located, soliciting people for a support group who were in early stages of memory change,





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and also on medications for their memory, e.g. Aricept. Ms. W. responded, "That's what

made me answer, when I read your ad." "I thought about it for quite awhile, because it is

a kind of exposure." She continued, "and I had that [article] put away and I had a circle

around it. And it took me a long time." When asked the reason for her hesitancy she

shared "... it is easier to admit to a physical problem that everybody can see anyway than

something that is mental. I have always been bright. I was a good student ... and then all

of a sudden to find out that it was a mental disability of some kind was hard for me to

swallow." She went on to tell me that the article, and her decision to talk with me,

spurred her to confide in her friend, and also her son, "... and I told her about this

appointment I had with you. I hadn't told anybody. I'm a little ashamed of it for the

reason [EAD]." She continued, ... I had written on the article "tell M [son]. And I

didn't tell him for the longest time. And when I did he said "mom, good for you, I'm

proud of you."

Many residents of the retirement complex often stop by my office to chat and share

their problems. The "word of mouth" approach had spread the word that I was "studying

memory problems," and prompted people to seek me out. It was during these "drop in"

visits that some of the participants met and confided in me their initial memory loss story.

As previously stated in Chapter 4, in the section on awareness context, and also in the

section on seeking answers, the availability of a professional who can encourage an open

awareness context, as well as give credible information and feedback, is crucial for many

people to begin their efforts at sharing their problems with EML. Conversations with

some of the group participants continued after the group ended, since they had a habit of

frequently dropping by my office and sharing their changes and struggles. Ms. A. stated,







"IfI didn't have you to talk to around this place I think I'd go crazy." Ms. W. stated,

"You know what's going on with me so I can tell you..."

Friends

For many, the initial disclosure process involved selective sharing with friends.

Ms. W. admitted that she would not expose herself or her confusion to just anyone by

talking about EML. Rather, she selectively chose to get to know some people better

before allowing the exposure of her self Friends seemed able to facilitate the work of

disclosure because they appeared understanding of EML. Mr. M. stated, "They know it,

and accept us." One of the matriarchs of the group shared with me "I went through this

[dementia] with my husband, so I can understand her [friend]." Ms. C. stated that her

friends were aware of her memory problem and supportive of her, "I don't have any

friends who do not know that something is happening to me and they respect that." Her

strategy was to alert them, "I let them know ahead of time, I tell them I may not remember

what you did ... I let them know."

Interacting with friends involved the friend's efforts at normalizing and minimizing

problems with EML. If someone in the group had EML problems, it appeared easier to

interact if they had been long time friends, for they were able to draw on long term

familiarity to help with connections, as well as trust. Many of the people in the retirement

community were religiously and familialy connected as "lifelong friends and family" and

most had known each other since childhood. Ms. RK stated "I've known these people

since I was a girl, I can keep up with the conversation because I know who they are

talking about, it's all familiar to me."





83

Those able to do the disclosure work successfully, even with the deconpensation

from EAD, had improved interaction among friends, because friends were generally

supportive and accepting of the changes. Friends seemed able to facilitate the emotion

work required in this phase; they were able to realign the emotions of the participants and

help mitigate the emotional pain associated with the EML. Ms. W. admitted that she felt

friends were more understanding than family because "they are not as critical, and they can

also help us fill in the pieces we forget." Ms. W. also shared that she was able to admit to

friends when she was having good days versus bad days, and she conceded to feeling

comfortable doing this. Probably it was her open awareness context with her friends that

allowed for this comfort. In contrast, when Ms. V. expressed to the group that sharing

your EML with close friends can "put you right," she also felt she had no one with whom

to share her EML troubles. Ms. W. chided her for "being a loner" and told Ms. V. that

she was responsible for being alone. She encouraged her "to reach out," that "being open

is better," while admitting to Ms. V. that the hardest part is admitting to EML and asking

for help.

All of the efforts at this point were compensatory in nature and focused on the idea

of saving face in interaction with others. The next phase demonstrates the progression of

EAD, and people's realization that the power of interaction can lead to loss of face.

Emotion work now becomes palpable, as the fill effects of disclosure are felt.

Forced Disclosure Increased Disruption and Exposure

As the disease trajectory continued, people shared their frustrations of living with

the increased failings of EAD, and the implications of the decline. The EML support

groups provided a safe forum for the participants to share their fears and frustrations. Ms.

A. disclosed that in the past she had used association of ideas to assist her in remembering,







but this strategy no longer worked for her, as it was too difficult to remember the

associations. The plan of writing reminder notes did not help her now either, since she

either lost the notes or did not remember to check them. Rather, the reminder notes only

served to "make me think badly of myself ....that would be telling me I'm going down in

the hole fast." The meaning to her was clear, "ifI need these notes I must be declining."

She poignantly shared her feelings concerning her sense of the effects of her EAD

changes; "you lose your personality, you lose your get up and go, your will to do."

Many participants were aware of and able to discuss their experiences with what

Goffinan (1963) described as an episode of failed cover, or inability to sustain norms.

During her second group meeting, Ms. A. announced, "This is my first meeting." When

the group corrected her, she began to cry, realizing her exposure. She lamented ..."I have

sorta prided myself on my intelligence. I thought I was smart and now it is very degrading

to have something like this happen to you. You can't remember whether you have been to

the bathroom in the morning or not. That's bad!" Her sad and then facetious comments

reveal her feelings in response to a forced awareness of her limitations. Ms. W.

demonstrated that the problems of EAD were shared by the group when she conmiserated

with her and stated, "it's the pits."

Some families came to notice problems after an extended visit with their loved one;

others came to the realization that there were problems when a specific incident forced

them to take notice. These critical incidents or catastrophic events are often the cutting

points that can force the exposure of the person's EAD problems. Families then take

notice, often for the first time. When catastrophic acts become public, someone intervenes

and increases vigilance. Initially, Ms. A. experienced a mix up of medications that led to a







hospitalization; the family response was to monitor her more closely by bringing her

medications to her apartment every morning. The critical juncture came when she had

two dramatic episodes within a short time span, burning food and engulfing her apartment

in smoke, and flooding the apartment while watering her plants; their response then was to

turn off her stove for safety reasons. She interpreted this as "they don't trust me to do a

thing by myself anymore, ..." and "hurt feelings." She frequently related her troubling

incidents during the following group meetings; the incident clearly had made a dramatic

impression on her. She voiced an understanding of the causation and consequences of her

actions, "it's my memory that's gone," and "I did some crazy things that got me in trouble,

now they don't trust me."

Rather than one dramatic event, families and people with EAD often noticed a

series of small slips that could not be denied. Ms. W.'s exposure with her out-of-town

son occurred when she ran out of medications and admitted this to him on the telephone.

She reported that he became upset and berated her, "Don't you know you have to take

these medications for your blood pressure and your memory?" During his next visit, she

was "caught" taking her pills incorrectly, and this incident, plus others that the fianily had

been noticing, provided the opportunity for mother and son to discuss her worsening

memory changes. He increased his vigilance by enrolling his mother in a support program

that monitors her medication and day-to-day fuinctioning. Interestingly, she let me know

that she is grateful for this monitoring, because she is aware of her decline and

appreciative of the outside support.

Responses of Families

While friends were able to facilitate disclosure, families often hindered the process.

As the trajectory of EAD continued and decline became more evident, there was often a







period of discord, or increased strain during finily interaction. Tension management is

part of the emotion work that caregivers face in caring for people with AD

(MacRae,1998) and in this research, both the people with EAD, and their families

experienced the need for tension management. Much has been written about the strain

involved with being a caregiver, but this study highlights the strain felt by both the family

and the person with EAD. Transitioning with EAD led to changes in the role of family

members, and an increase in conflict. Some families became enmeshed, and the

consequence for persons with EAD was their fear of a loss of independence. Many

participants discussed incidents of family relationship problems, expressing anger at their

families for taking over, and frustration with knowing that now there was more

interdependence in their relationship.

Increased family criticism

Forced disclosure, which was evidence of the participant's filing compensatory

strategies, often caused increased strain in family relationships, and the support system of

some fiunily members was often found to be less than helpful. Ms. W. shared the strain

that occurred after a family visit. She came in late to one of the support group meetings

and expressed frustration that she had forgotten the meeting. She announced to a member

of the group, "You were supposed to remind me!" She chuckled, but shared with the

group how disruptive it was to have family visits. Her son had just left from a week long

visit; she was visibly shaken and exhausted, and he left distraught and frustrated, later

calling me to discuss the week's events. She mimicked his responses to her during the

visit, "how come you didn't remember?" and "why didn't you?" She continued, "I'm

beginning to feel with my son ... that I'm just down the drain." My observation has







shown that the increased pressure from these family visits can be very disruptive to the

daily equilibrium of the EAD participant. In the case of Ms. W., each time that her son or

her sister have come for an extended visit, she has experienced a period of

decompensation, displaying incidences of increased confusion that are not the norm for her

day to day functioning, even with EAD. For example, they were critical that she did not

take her medications correctly, that she had problems with the telephone and radio, and

she repeated herself more than usual, to the point that I suggested different arrangements

for them on their next visit, to include separate lodging and limited periods of exposure.

She was aware of her son's aggravation, "he meant it to be pleasant but instead stayed

frustrated." It is as if the person with EAD feels the pressure of being on stage and

having to perform correctly; they can only sustain their "up front performance"

(Goffman, 1959, p.22) for a limited period of time, experiencing a type of performance

anxiety and performing worse. When families leave, the person is exhausted, more

disoriented, and needs time to regain his/her previous level of functioning.

Enmeshed / changed roles

Forced disclosure caused further erosion in the relationships between families and

the person with EAD. During the support group process, participants freely discussed the

changes they were experiencing as their boundaries began to change and their families

became more involved in their changing lives. Their increased family discord mirrored the

changing family relationships, especially as the roles of parent and children began a

reversal. Many voiced the concern that their children had become their parents; in the

words of Ms. W., "my son has become my father," Ms. L., "my daughter acts like my

mother, you know" and Ms. A., "my son treats me like a child." The frustration of these







changed relationships came about when the participant felt that their child was

overstepping their bounds in acting as a caregiver. Ms. A. vented, "my kid shows up like

clock work every morning to give me a hand ful of pills, including my daily forgetfulness

pill; I'm a nurse [retired] for goodness sake, doesn't he know I know how to take pills? I

don't need him to do this." Her frustration and anger at this stage was related to her

family "taking over and making her decisions;" which is a typical reaction to enmeshed

behavior. She often has mentioned that she appreciates her son's efforts to care for her,

but resents the intrusion into her life. She interprets her sons efforts as being

overprotective of her, allowing for no privacy; "they even want to go the the doctor with

me!" Added to a loss of memory is now a loss of privacy. Her tactics to deal with her

children varied from deception, "I'm going to switch doctors and not tell them," to

resistence, one day she actually refused to go to a doctors appointment with her son, "he

made the appointment, let him go." Her efforts to set limits relates to her need to

maintain some semblance of control, at a time of loss and decline. She vacillated between

a realization that her sons want to help, versus anger at them taking over, emphasizing the

fine balance that family caregivers must walk when offering assistance to the memory

impaired person. It is interesting that many participants expressed little problem with

transferring the money management component of their lives over to their children; it

appears that some areas of life functioning such as financial management might be felt to

be less invasive than others such as personal and medical monitoring.

Responses of Participants

Participants responded to their exposure and perceived lack of familial support

with a noticeable change in their feelings of self worth. Their ultimate loss, losing face,







was taking place, and they reacted by withdrawing from activities that could cause them

further embarrassment. The theme for this phase of disclosure work focused on loss and

forced withdrawal; for example, Mr. H. and Rev. V. giving up their high profile jobs rather

than face further discomfort, Ms. B. and Ms. T. leaving their volunteer roles, Mr. T. and

Ms. J. losing their jobs because they could no longer hide their mistakes, and Mr. M.

withdrawing from social situations. For many people with EAD, performance fear caused

them to be self protective, and retreat from potentially humiliating situations. Participants

spoke of giving up various recreational activities that no longer offered success, such as

crossword puzzles, reading, and golf They shared their emotional responses to these

changes and losses, such as feelings of self deprecation, embarrassment, and frustration.

Changes in sense of self

Participants in the group were able to verbalize their increased feelings of self

deprecation in convincing terms. Ms. A. expressed that she "feels like an idiot" because

she was aware of "losing reasoning abilities;" she further opined that her problems with

memory disrupts her daily living routine, "I still have so much that I want to do" and

expresses disgust with herself for not accomplishing it. Ms. W. chimed in that she often

"feels like the idiot relative ...the one you shunned." and further noting "your own self

esteem gets lost with this." [EAD] Later, Ms. A. stated that she has the ability to be

accepting of her self, even with EML but believes if others knew of it, they would label

her "nuts." Mr. M.. vehemently disagreed with the "nut" label for EML, but all

commented on the negative connotation of the word senile. Another consequence of

forced disclosure of EAD for the participants was to express irritation with themselves,

and embarrassment in interaction with others. Ms. J. admitted that the most difficult part







of EML is that "you feel kinda desperate." Ms. A. cried as a reaction to the realization

that she had forgotten she had attended our first meeting, and her forced awareness of this

by others in the group. She also cried as she reacted to the fact that she had forgotten her

deceased husband's birthday; she voiced with frustration "I have never done that before,

what is wrong with me?" The emotional undertones that continually surfaced in these

people's stories reflected the continuing Emotion work necessary for Disclosure work.

The following is an example of a participant who remained mired in the painful

struggle of the disclosure process, and was never able to move on to an acceptance of his

AD. During our initial interview, the Rev. V.'s diagnostic status was in limbo, since he

had not been told definitively that he had AD. "My doctor didn't think my memory loss

was so bad, he wants to wait and see if it worsens." This contributed to vacillation in his

decision making, for example, should he retire from his consulting work or continue, and

conflictual statements concerning his decline in functioning, for example, "I'm not as

sharp," "I can't cope like I used to" vs "it doesn't overwhelm me," and "I'm pretty

positive." He still presented himself well, and was very upbeat and confident in his

manner. He admitted to an awareness of his memory changes and early functional

problems, could discuss the implications of his EML, and was realistic in admitting that he

should probably plan for a restricted future.

Rev. V. had agreed to a follow up interview on his next visit to Jacksonville, but

on his return one year later, he refused to honor that promise. He did consent to allowing

his daughter (a nurse in the PhD program) to dialogue with him and share the information

with me. He admitted that he was not willing to talk with me because he was "too

embarrassed, and not the same" as he used to be. His statements revealed a much





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changed individual, a man wracked with worry about the future, and frustration with the

present. The issues that he now disclosed reflected the consequences of his continuing

memory changes. He shared his "embarrassment with the inability to remember simple

things, like names of people in church," and his constant worry that he would appear "old

and stupid" to others, for example, not remembering how much money he gave someone,

thus unsure of how much change to expect. He also expressed frustration with his decline

in problem solving and functional abilities. Many of the experiences that he now shared

reflected the loss of face that was occurring with continual forced disclosure, and few

opportunities for positive reinforcement. He spent much time sharing with his daughter

how he felt he was losing himself that he is not what he used to be, and that since so

much of him was about relating to others, he felt part of that was now gone. This

statement is significant for him recognizing that his losses due to AD impact and diminish

his international opportunities. He had made the decision to retire, and he poignantly gave

his daughter copies of his sermons and books, seeming to symbolically give up the piece

of himself that was most precious to him and that he sensed he was losing.

He acknowledged his memory was now worse, and because of this certainty, he

was refusing further evaluation or retesting, stating "why spend the time and money when

there is nothing that can be done." He stated that he was not anxious to do something

that was really for someone else, of no benefit to him, and would only make him feel

worse. His comments reflected his sense of despondency, and also an acute realization of

his changes. She asked him if he was worried that God would forget him; he smiled and

said no, but he was afraid that he would forget God, and he only hoped God would

understand. His daughter reported that he was now "self isolating, and irritating to be







around." He was able to discuss that his EML was getting worse; his reaction was

negative and fatalistic. The effects of the disease progression reflected a very different

person than the man I had met just one year earlier.

Interactional problems

Forced disclosure, the last phase of Disclosure work, can be high risk for

interactional problems, leading to feelings of devastation and alienation, and furthering

feelings of decreased self worth in the person with EAD. Both Ms. A. and Ms. W.

reached the stage of EAD where they intermittently experienced symptoms of paranoia.

Ms. A. misplaced personal items, and then accused the housekeeping staff of theft; Ms. W.

accused her son of saying "hurtful things" to her. Resultant interactional problems

occurred with staff, family, and neighbors; as one neighbor stated "we are tired of hearing

about it." Ms. W. described in vivid detail her situational event, "I took offense to

something that my son said and I worked myself up to a terrible pitch and I had a

completely sleepless night over it and when I woke up in the morning, I didn't expect to

see the same face in the mirror because I had been up all night long ...I realized I was

being completely irrational. And that scared the hell out of me. I looked up the word

paranoid. And I think that was a paranoid event because my son, if he did say something,

certainly never intended to wound me, because he is a very good man." Ms. A often gave

her account of how "someone comes into my apartment when I am not there and takes my

hose, my sweater, and things out of my refrigerator. This place is not safe." Staff

responded by either ignoring or disputing her claims; she then would storm around the

front desk and proclaim "I'm moving out of this place, nothing is safe." The poignant

part was that both of these women would later realize their miscalculations, and then





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express profuse apologies. One day Ms. A. admitted to me "I found my things you know,

and I apologized to the girls, but I'm tired of eating crow."

Exclusion

With the transitioning of EAD, strategies such as covering and hiding began to fal

forcing disclosures and even creating a strain in the support system of friends. People

were "outed" by their failures in memory and behavior if they no longer could cover and

perform. A social leader of the retirement community came to me one day "with a

dilemma to discuss." She elaborated that although she was a friend of Ms. G.'s, she was

concerned about an incident that had occurred when Ms. G. had recently appeared at a

canasta card game and stated to the group, "What is this all about, I have never played this

before." The group members were "shocked, because she had played well for years."

Some in the group were becoming quite intolerant of her inability to play, since it

disrupted their weekly card game. The dilemma was whether to choose to protect their

friend and attempt to still include her in the card games, or to find a way to exclude her

from the group. The leader eventually opted to ask Ms. G. to leave the group, "to protect

her from hurt feelings from others" but assured her she was welcome back into the group

"when she was feeling better, which of course I know will not happen because of her

memory problem." EAD led to exclusion in other ways also. Ms. A. shared with the

group her feelings when she was left out of a meeting between administration and her

family concerning her "recent fiascos" of leaving the water running in the sink and a pot to

boil dry on the stove. Although she understood the need for the meeting, she was angry at

being excluded and niarginalized. "She [administrator] called all three of my boys in for a

meeting after I burned things up. I wouldn't have been so mad ifI had been included. I