TY - JOUR
T1 - Important components for Dutch in-home care based on qualitative interviews with persons with dementia and informal caregivers
AU - Vullings, Isabelle
AU - Labrie, Nanon
AU - Wammes, Joost D.
AU - de Bekker-Grob, Esther W.
AU - MacNeil-Vroomen, Janet
PY - 2020/12
Y1 - 2020/12
N2 - 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.
AB - 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.
KW - accessibility of health services
KW - dementia
KW - health-care economics and organizations
KW - home-care service
KW - informal care
KW - patient preference
KW - qualitative research
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U2 - 10.1111/hex.13118
DO - 10.1111/hex.13118
M3 - Article
AN - SCOPUS:85092158456
SN - 1369-6513
VL - 23
SP - 1412
EP - 1419
JO - Health Expectations
JF - Health Expectations
IS - 6
ER -