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

Alzheimer’s & Dementia: Translational Research & Clinical Interventions

Nanon H. M. Labrie¹  George O. Agogo²  Joost D. Wammes³  Janet L. MacNeil Vroomen³  Joan K. Monin⁴  Esther W. deBekker‐Grob⁵ 

[1] Athena Institute Vrije Universiteit Amsterdam Amsterdam The Netherlands;Center for Disease Control and Prevention (CDC) Village Market Nairobi Kenya;Department of Internal Medicine, Section of Geriatric Medicine, Amsterdam Public Health Research Institute Amsterdam UMC, University of Amsterdam Amsterdam The Netherlands;Department of Social and Behavioral Sciences Yale School of Public Health New Haven Connecticut USA;Erasmus School of Health Policy & Management Erasmus University Rotterdam Rotterdam The Netherlands;

关键词: care preferences;    dementia;    health services;    informal caregivers;    mixed‐methods study;   

DOI  :  10.1002/trc2.12193

来源: DOAJ

【 摘 要 】

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.

【 授权许可】

Unknown