Persons with dementia and informal caregivers prioritizing care: A mixed-methods study

Joost D. Wammes*, Nanon H.M. Labrie, George O. Agogo, Joan K. Monin, EW (Esther) de Bekker - Grob, Janet L. MacNeil-Vroomen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

7 Citations (Scopus)
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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.

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.

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.

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.
Original languageEnglish
Article numbere12193
JournalAlzheimer's and Dementia: Translational Research and Clinical Interventions
Issue number1
Early online date16 Jun 2021
Publication statusPublished - 6 Aug 2021

Bibliographical note

This work was supported by the Netherlands Organization for Health Research and Development (NWO-ZonMw Veni, 091.619.060), and the Ben Sajet Centrum (Ministry of Health, Welfare and Sport, Grant: 330428). The authors would like to thank all participants who invested their time. Furthermore, we would like to thank the health care professionals and the informal caregiver that we consulted in the design phase of the focus group.


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