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Visual Cues for Activities of Daily Living: Opinions of Dementia Caregivers

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Visual Cues for Activities of Daily Living: Opinions of Dementia Caregivers
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Killingsworth, Jessica L.
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Due to the aging population, especially the generation of baby boomers, dementia should be a public health concern. There is a lack of research on visual cues, especially in regards to which type of visual cues (written, organizational, or environmental) caregivers find to be the most useful. The aim of this study was to identify the opinions of caregivers of persons with dementia on the usefulness of the different types of visual cues for completing activities of daily living (ADLs) in the home environment. A focus group of seven caregivers of persons with dementia was conducted. The following major themes were identified: organizational cues are more useful for caregivers than for care recipients, environmental cues are the most useful type of visual cue for care recipients, and written cues are less useful for more advanced stages of dementia. The following secondary themes were identified: care recipients maintaining a sense of independence, care recipients becoming lost in the home environment, language loss, and dressing challenges. The findings of this study, which included a limited amount of data, suggest that future research on caregivers' opinions of visual cues could be beneficial. Keywords: dementia, visual cues, activities of daily living, aging in place ( en )
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Awarded Bachelor of Health Science, summa cum laude, on May 8, 2018. Major: Health Science. Emphasis/Concentration: General Health Sciences
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College or School: College of Public Health & Health Professions
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Advisor: Linda Struckmeyer. Advisor Department or School: Department of Occupational Therapy

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University of Florida
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Copyright Jessica L. Killingsworth. Permission granted to the University of Florida to digitize, archive and distribute this item for non-profit research and educational purposes. Any reuse of this item in excess of fair use or other copyright exemptions requires permission of the copyright holder.

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Running head: VISUAL CUES FOR ADLS 1 Visual Cues for Activities of Daily Living: Opinions of Dementia Caregivers Jessica Killingsworth Dr. Linda Struckmeyer Department of Occupational Therapy College of Public Health and Health Professions University of Florida

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VISUAL CUES FOR ADLS 2 Abstract Due to the aging population, especially the generation of baby boomers, dementia should be a public health concern. T here is a lack of research on visual cues, especially in regards to which type of visual cues (written, organizational, or environmental) caregivers find to be the most usef ul The aim of this study w a s to identify the opinions of caregivers of persons with dementia on the use fulness of the different types of visual cues f or completing a ctivities of daily l iving (ADLs) in the home environment A focus group of seven caregivers of persons with dementia was conducted The following major themes were identifi ed: organizational cues are more useful for caregivers than for care recipients, environm ental cues are the most useful type of v isual cue for care recipients, and written cues are less useful for m ore advanced stages of dementia The following secondary themes were identified : care recipients maintaining a sense of i ndepen dence care recipients becomin g lost in the home environment, language loss and dressing challenges. The findings of this study, which included a limited amount of data, suggest could be beneficial Keywords: dementia, visual cues, activities of daily living, aging in place

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VISUAL CUES FOR ADLS 3 Visual Cues for Activities of Daily Living: Opinions of Dementia Caregivers Introduction Due to the aging population, especially the generation of baby boomers, d em entia should be a public health concern. More individuals with dementia are electing to age in place Aging in place can be facilitated through the use of home modifications, such as visual cues ( Wherton & Monk, 2008 ) Specifically, v isual cues can be used to facilitate a ctivities of daily living (ADLs) ( Wherton & Monk, 2008 ). Examples of ADLs include dressing, remembering events and being able to follow medicine regimens There are three different types of visual cues: written cues, organizational cues, and environmental cues ( Bourgeois, 2007) Written Cues Written cues include labels, notes, and lists. Arntzen, Holthe, and Jentoft (2014) identified that interviewed care recipients considered white boards to be helpful for carrying out ADLs. and Bucks (2007) identified that interviewed care recipients found notes to be helpful for ADLs Keller, Edward, & Cook ( 2007 ) found that notes and whiteboards were found to be helpf ul for reminding care recipie nts when the next meal occurred. Similarly, Boger, Quraishi, Turcotte, & Dunal, ( 2014 ) identifie d that care recipients found notes, w hiteboards, and bulletin boards useful An intervention that included the use of labels and li sts was found to be usefu l ( Judge, Yarry, & Orsulic Jeras, 2009 ). Another intervention that included the use of ingredient labels and to do lists was ( Nomura et al., 2009 ). Therefore, the results of the studies imply that written cues aid persons with dementia i n carrying out ADLs in the home environment.

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VISUAL CUES FOR ADLS 4 Organizational Cues Organizational cues include planners, pill organizers, and calendars. In one study, the interviewees found calendars to be helpful ( Arntzen et al. 201 4). Another study identified that the use of medicine organizers to be helpful for remembering to take medications ( Boger et al. 2014 ) Four interventions included the use of calendars for either scheduling or rememberin g to take medications ( Cahill, Begley, Faulkner, & Hagen, 2007; Judge et al. 2009; Kurz et al., 2012; Topo et al., 2007 ) One intervention which included the use of planners and notebook s, statistically improved ADLs and memory ( Kurz, Pohl, Ramsenthaler & Sorg, 2009 ). Another intervention included the successful implementation of a memory notebook ( Schmitter Edgecombe, Howard, Pavawalla, Howell, & Rueda, 2008 ) In sum, the results of the studies imply that organizational cues aid persons with dementia i n carrying out ADLs in the home environment. Environmental Cues Environmental cues include color coding and placement of item s in view for task completion In one study the interviewed caregivers and care recipients valued the use o f environmental cues in the home, such as the placement of medicine bottles in view for use and the placement of personal hygiene items in view for use ( Wherton & Monk, 2008 ). In another study interviewed caregivers shared that cues, such as placing a measuring cup or water glass in view, are useful f or promoting cooking ( Keller, Edward, & Cook, 2007 ). An intervention, which included placing kitchen utensils in view, w as the kitchen ( Nomura et al., 2009 ). In another interventi on part of the intervention included placement of items in view for task completion such as the task of making a salad ( Gitlin et al.,

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VISUAL CUES FOR ADLS 5 2008 ). To summarize, the results of the studies imply that environmental cues aid persons with dementia in carrying out ADLs in the home environment Therefore the current literature although limited, suggest s that different types of visual cues can aid persons with dementia in carrying out ADLs in the home environment There is a lack of research on visual cues especially in regards to type of visual cue s aids care recipients the most in completing ADLs Aim s and Hypothesis The primary aim of this study wa s identify the opinions of caregivers of persons with dementia on the use fulness of the different types of visual cues for completing a ctivities of d aily l iving (ADLs) in the home environment. The secondary aim was to identify which type of visual cues caregivers deem to be the most useful type of visual cue for completing ADLs Based on the experience of working with caregivers and care recipients i t was hypothes ized that caregivers may indicate that environmental cues aid care recipients the most in completing ADLs. Methods Participants Inclusion criteria included that all of the participants must be between the ages of 18 and 89 and serve as a caregiver of a person with dementia who lives at home. The p articipants were recruited from a clinic that offers day care service s to persons with dementia. Researchers d istribute d flyers (Appendix A ) at a caregiver support group meeting. Also, flyers were left at the facility. Interested participants contacted the primary investigator via telephone (Appendix B). Seven participants were included in the study. Six of the participants were females, while one participant was a male. Six of the participant s were the primary caregivers, while one was a co

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VISUAL CUES FOR ADLS 6 caregiver. One p articipant was a caregiver of a care recipient with mild dementia. Two participant s were caregiver s of a care recipient with moderate dementia. The other f our participants were caregivers of care recipients with more advanced dementia. Data Collection A fo cus group was held O n the day of the focus group, all of the participants first completed an informed consent form During the focus group, the participants filled out a demographics information form before discussing five questions concerning the different typ es of visual cues (Appendix C ). Detailed notes were taken during the focus group and were later de identified by referring to each parti cipant by a participant number. The group discussion was recorded using a portable digital audio recorder. Data Analysis The audio recording of the focus group was transcribed by one member of the research team The transcript was checked by the other members of the research team, and corrections were made. Then, the audio recording was destroyed. The demographic data was analyzed using descriptive analysis. Based on the focus group transcript, a thematic coding approach was implemented in order to code the data and to identify any possible themes. The analysis was first performed by two members of the research team, who independently used the transcript to code the data and to identify any possible themes. The research team members read over codes and themes and discussed any differences. Then, they agreed up on a finalized version of the codes and themes. The finalized version was presented to the research mentor f or review and feedback. T he finalized themes were later presented to a qualitative research group for additional feedback Based on the feedback, two of the proposed major themes wer e combined into one major theme.

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VISUAL CUES FOR ADLS 7 Results Major Themes Three major themes as illustrated by Figure 1, were identified: 1. Organizational Cues More Useful for Caregivers than for Persons with Dementia Four of the caregivers discussed that organizational cues are more useful for caregivers than for care recipients. For inst ance, according to Participant One The pill container is 2. Environmental Cues Overall Most Useful for Persons with Dementia This theme concurs with the hypothesis that caregivers may deem environmental cues to be the most useful type of visual cue for completing ADLs. Six of the participants had already implemented the use of environmental visual cues in the home environment. And, towards the end of the focus group, when asked, five of the participants indica ted that they felt that environmental were overall the most important type of visual cue. Unexpectedly, the participants mentioned placing items out of view, in addition to the placement of items in vi ew. For instance, according to Participant Six sure there was nothing toxic on the counter because she would go in and just you know mix all 3. Written Cues Less Useful for More Advanced Stages Four of the participants discussed written cues being less useful for more advanced stages due to language loss associated with dementia For inst ance, according to Participant Four : letter or wo had the names of her

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VISUAL CUES FOR ADLS 8 ot Figure 1. Major t hemes This figure illustrates the major themes. Secondary Themes Four secondary themes were identified: 1. Maintaining Sense of Independence Three of the participants disc ussed how their care recipients value maintaining a sense of independence. For exa mple, according to Participant Five She knows where the 2. Becoming Lost in Home Environment Four of the participants discussed their care recipients becoming l ost in the home environment. For example, according to Participant Six Sometimes, she can find the Organizational More Useful for Caregiver Written Less Useful for Advanced Placement In View Placement Out of Vie w Environmental Most Useful for Care Recipient Completion of ADLs

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VISUAL CUES FOR ADLS 9 3. Language Loss Five of the participants discussed loss of language. For example, according to Participant Six mothe r has lost a lot of her language. I mean some of her words, a lot of her 4. Dressing Challenges Four of the p articipant s discussed dressing challenges. For example, accordi ng to Participant Three She has like a uni I pull out a blue shirt and a pair of jeans In sum, three major themes and four secondary themes were identified. Disc u s sion This study was the first study to the research team seek the opinions of caregivers of pe rsons with dementia on the use fulness of the three types of visual cues for completing ADLs in the home environment. Specifically what set this study apart is that one of the questions in the interview guide sought to identify which type of visual cues caregivers believe aid care recipients the most in completing ADLs. Th ree major themes and four secondary themes were identified. One of the themes concur red with the hypothesis that caregivers may deem environmental cues to be the most useful type of visual cue for completing ADLs T he study was limited in that it only included one focus group of seven participan ts. Yet, the result s of the study are useful as there was consensus among the p articipants on the usefulness of the different types of visual cues. For instance, five of the seven participants agreed

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VISUAL CUES FOR ADLS 10 that in regards to completing ADLs in the home environmental, environmental cues are the most usefu l type of visual cue for care recipients The findings of the study suggest that future research n the use of visual cues in the home environment could be bene ficial. In this study, the caregive rs expressed that written cues are less useful for care recipients with more advanced stages of dementia Therefore, future research could focus on identifying whether the usefulness of each type of visual cue is dependent upon the stage of dementia.

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VISUAL CUES FOR ADLS 11 Ref erences Arntzen, C., Holthe, T., & Jentoft, R. (201 4 ). Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers. Dementia 15 (4), 646 662. doi: 10.1177/1471301214532263 Boger, J., Q uraishi, M., Turcotte, N., & Dunal, L. (2014). The identification of assistive technologies being used to support the daily occupations of community dwelling older adults with dementia: A cross sectional pilot study. Disability and Rehabilitation: Assistiv e Technology 9 (1), 17 30. Bourgeois, M. S. (2007). Memory books and other graphic cuing systems: practical communication and memory aids for adults with dementia Baltimore: Health Professions Press Cahill, S. Begley, E., Faulkn er, J. P., & Hagen, I. (2007). It gives me a sense of ind Findings from Ireland on the use and usefulness of assistive technology for people with dementia. Technology and Disability 19 (2, 3), 133 142. Gitlin, L. N., Winter, L., Burke, J., Chernett, N., De nnis, M. P., & Hauck, W. W. (2008). Tailored activities to manage neuropsychiatric behaviors in persons with dementi a and reduce caregiver burden: A randomized pilot study. The American Journal of Geriatric Psychiatry 16 (3), 229 239. doi: 10.1097/01.JGP.0 000300629.35408.94 Judge, K. S., Yarry, S. J., & Orsulic Jeras, S. (2009). Acceptability and feasibility results of a strength based skills training program for dementia caregiving dyads. The Gerontologist 50 (3), 408 417. doi: 10.1093/geront/gnp138

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VISUAL CUES FOR ADLS 12 Kelle r, H. H., Edward, H. G., & Cook, C. (2007). Mealtime experiences of families with dementia. American Journal of Alzheimer's Disease & Other Dementias 21 (6), 431 438. doi: 10.1177/1533317506294601 Kurz, A., Pohl, C., Ramsenthaler, M., & Sorg, C. (2009). Co gnitive rehabilitation in patients with mild cognitive impairment. International Journal of Geriatric Psychiatry 24 (2), 163 168. doi: 10.1002/gps.2086 Kurz, A., Thne Otto, A., Cramer, B., Egert, S., Frlich, L., Gertz, H. J., ... & Werheid, K. (2012). CO RDIAL: cognitive rehabilitation and cognitive behavioral treatment for early dementia in Alzheimer disease: A multicenter, randomized, controlled trial. Alzheimer Disease & Associated Disorders 26 (3), 246 253. doi: 10.1097/WAD.0b013e318231e46e Nomura, M., Makimoto, K., Kato, M., Shiba, T., Matsuura, C., Shigenobu, K., ... & Ikeda, M. (2009). Empowering older people with early dementia and family caregivers: A participatory action research study. International journal of nursing studies 46 (4), 4 31 441. doi: 10.1016/j.ijnurstu.2007.09.009 Phinney, A., C onnor, D. L. (2007). Doing as much as I can do: The meaning of activity for people with dementia. Aging and Mental Health 11 (4), 384 393. doi: 10.1080/13607860601086470 Preston, L., Marshall, A., & Bucks, R. S. (2007). Investigating the ways that older people cope with dementia: A qualitative study. Aging & mental health 11 (2), 131 143. doi: 10.1080/13607860600844572 Schmitter Edgecombe, M., Howard, J., Pavawalla, S., Howell, L. & Rueda, A. (2008). Multidyad memory notebook intervention for very mild dementia: A pilot study

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VISUAL CUES FOR ADLS 13 23 (5), 477 487. doi: 10.1177/1533317508320794 Topo, P., Saarikalle, K., Begley, E., Cahill, S., Ho lthe, T. don't know about the past or the future, but today it's Friday Evaluation of a time aid for people with dementia. Technology and Disability 19 (2, 3), 121 131. Wherton, J. P., & Monk, A. F. (2008). Technological opportunities for supporting people with dementia who are living at home. International Journal of Human Computer Studies 66 (8), 571 586. doi: 10.1016/j.ijhcs.2008.03.001

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VISUAL CUES FOR ADLS 14 Appendix A Flyer We are looking for caregivers of persons with dementia who would be willing to share their opinion on the use of visual cues in the home for completing activities of daily living (i.e. household tasks and activities) for our research study. The focus group will last no more than 1 hour. We will discuss the three types of visual cues: Written Visual Cues : lists, labels, and notes Organizational Visual Cues : calendars, schedules, and pill organizers Environmental Visual Cues: objects or placement of items in view for task completion If you are interested in participating, please contact the study supervisor Linda Struckmeyer Study IRB:201701807

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VISUAL CUES FOR ADLS 15 Appendix B Phone Script Hello, this is Linda Struckmeyer Would you like to hear more about our focus group? activities of daily living, such as completing household tasks. We will be holding a focus group that should last no more than one hour on [date and time] at [location]. On the day of the focus group, after consenting to participate, you will be given a packet that will include a short demographics information form that we will request you to fill out. The packet will also include examples of the visual cues that we will be discussing; thus, no outside knowledge of visual cues will be required. Participation in this study is entirely voluntary, and you may leave the focus group at any time. Additionally, please no te that the focus group will be recorded using an audio recorder and notes will be taken. All data collected will be deidentified. But, all data and study records will be kept on a secure computer and in a locked office and locked drawer. Would you like to participate in our study? Thank you for your time.

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VISUAL CUES FOR ADLS 16 WELCOME Appendix C Caregiver Handout

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VISUAL CUES FOR ADLS 17 Background Information What are Activities of Daily Living? Examples include the following: Completing household tasks, such as cooking Following medicine regimens Remembering important dates and events What are Visual Cues? Visual cues are prompts or clues in the home. There are three types: Written Visual Cues : lists, labels, and notes Organizational Visual Cues : calendars schedules, and pill organizers Environmental Visual Cues: objects or placement of items in view for task completion (e.g. setting out ingredients for making a sandwich)

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VISUAL CUES FOR ADLS 18 o o o o o o o o o o o o o o o o o Participant Number: _____

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VISUAL CUES FOR ADLS 19 We will discuss the following questions: 1. Have you ever used a written visual cue to help your family member perform activities of daily living? If so, what kind? 2. Have you ever used an organizational visual cue to help your family member perform activities of daily living? If so, what kind? 3. Have you ever used an environmental visual cue to help your family member perform activities of daily living? If so, what kind? 4. Of the three types (written, visual, and environmental), which type or types do you find to be the most helpful for activiti es of daily living? Why? 5. Are there any visual cues that we discussed today that you would use in the future?