Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study
Abstract Introduction More persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these a...
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| Format: | Article |
| Language: | English |
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Wiley
2021-01-01
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| Series: | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/trc2.12193 |
| _version_ | 1817975396154474496 |
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| author | Joost D. Wammes Nanon H. M. Labrie George O. Agogo Joan K. Monin Esther W. deBekker‐Grob Janet L. MacNeil Vroomen |
| author_facet | Joost D. Wammes Nanon H. M. Labrie George O. Agogo Joan K. Monin Esther W. deBekker‐Grob Janet L. MacNeil Vroomen |
| author_sort | Joost D. Wammes |
| collection | DOAJ |
| description | Abstract Introduction More persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these are valued by community‐dwelling persons with dementia and their informal caregivers. Understanding perspectives of persons with dementia and informal caregivers on care characteristics is a vital step in valuing care services. This study aims to prioritize care characteristics for community‐dwelling persons with dementia and informal caregivers with the use of an innovative mixed‐methods approach. Methods Six mixed focus groups were conducted in The Netherlands with persons with dementia (n = 23) and informal caregivers (n = 20), including a quantitative ranking exercise that prioritized seven care and support characteristics from "most important" to "least important," followed by a group discussion about the prioritization. Audio recordings were transcribed and analyzed using thematic analysis. Results The ranking exercise and discussion showed that persons with dementia favored in‐home care, help with daily activities, and social activities, whereas informal caregivers favored social activities, information about dementia, navigating the health care system, and emotional support. Discussion Persons with dementia prioritized day‐to‐day activities, whereas informal caregivers preferred assistance with organizing care and coping with caregiving. This study created a method to capture the care preferences of persons with dementia and informal caregivers. |
| first_indexed | 2024-04-13T21:48:27Z |
| format | Article |
| id | doaj.art-d2114be2c886497e9c900bc364e8231b |
| institution | Directory Open Access Journal |
| issn | 2352-8737 |
| language | English |
| last_indexed | 2024-04-13T21:48:27Z |
| publishDate | 2021-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| spelling | doaj.art-d2114be2c886497e9c900bc364e8231b2022-12-22T02:28:29ZengWileyAlzheimer’s & Dementia: Translational Research & Clinical Interventions2352-87372021-01-0171n/an/a10.1002/trc2.12193Persons with dementia and informal caregivers prioritizing care: A mixed‐methods studyJoost D. Wammes0Nanon H. M. Labrie1George O. Agogo2Joan K. Monin3Esther W. deBekker‐Grob4Janet L. MacNeil Vroomen5Department of Internal Medicine, Section of Geriatric Medicine, Amsterdam Public Health Research Institute Amsterdam UMC, University of Amsterdam Amsterdam The NetherlandsAthena Institute Vrije Universiteit Amsterdam Amsterdam The NetherlandsCenter for Disease Control and Prevention (CDC) Village Market Nairobi KenyaDepartment of Social and Behavioral Sciences Yale School of Public Health New Haven Connecticut USAErasmus School of Health Policy & Management Erasmus University Rotterdam Rotterdam The NetherlandsDepartment of Internal Medicine, Section of Geriatric Medicine, Amsterdam Public Health Research Institute Amsterdam UMC, University of Amsterdam Amsterdam The NetherlandsAbstract Introduction More persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these are valued by community‐dwelling persons with dementia and their informal caregivers. Understanding perspectives of persons with dementia and informal caregivers on care characteristics is a vital step in valuing care services. This study aims to prioritize care characteristics for community‐dwelling persons with dementia and informal caregivers with the use of an innovative mixed‐methods approach. Methods Six mixed focus groups were conducted in The Netherlands with persons with dementia (n = 23) and informal caregivers (n = 20), including a quantitative ranking exercise that prioritized seven care and support characteristics from "most important" to "least important," followed by a group discussion about the prioritization. Audio recordings were transcribed and analyzed using thematic analysis. Results The ranking exercise and discussion showed that persons with dementia favored in‐home care, help with daily activities, and social activities, whereas informal caregivers favored social activities, information about dementia, navigating the health care system, and emotional support. Discussion Persons with dementia prioritized day‐to‐day activities, whereas informal caregivers preferred assistance with organizing care and coping with caregiving. This study created a method to capture the care preferences of persons with dementia and informal caregivers.https://doi.org/10.1002/trc2.12193care preferencesdementiahealth servicesinformal caregiversmixed‐methods study |
| spellingShingle | Joost D. Wammes Nanon H. M. Labrie George O. Agogo Joan K. Monin Esther W. deBekker‐Grob Janet L. MacNeil Vroomen Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study Alzheimer’s & Dementia: Translational Research & Clinical Interventions care preferences dementia health services informal caregivers mixed‐methods study |
| title | Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study |
| title_full | Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study |
| title_fullStr | Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study |
| title_full_unstemmed | Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study |
| title_short | Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study |
| title_sort | persons with dementia and informal caregivers prioritizing care a mixed methods study |
| topic | care preferences dementia health services informal caregivers mixed‐methods study |
| url | https://doi.org/10.1002/trc2.12193 |
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