Isabelle Vullings1,2, Nanon Labrie2, Joost D Wammes1,2, Esther W de Bekker-Grob3,4, Janet MacNeil-Vroomen1. 1. Section Geriatrics, Department of Internal Medicine, Location Academic Medical Center, Amsterdam University Medical Center, The Netherlands. 2. Faculty of Sciences, Athena Institute, Vrije Universiteit, Amsterdam, The Netherlands. 3. Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The Netherlands. 4. Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.
Abstract
BACKGROUND: Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. OBJECTIVE: To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. DESIGN: Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. SETTING AND PARTICIPANTS: Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. RESULTS: Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. CONCLUSION: This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.
BACKGROUND:Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. OBJECTIVE: To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. DESIGN: Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. SETTING AND PARTICIPANTS: Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. RESULTS: Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. CONCLUSION: This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.
Keywords:
accessibility of health services; dementia; health-care economics and organizations; home-care service; informal care; patient preference; qualitative research
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