'I do things that I don't really want to do …': Understanding the everyday lives of family carers of people with dementia
Huizenga,Jacoba Bolt,Sascha Wilken,Jean Pierre Bleijenberg,Nienke Keady,John Van Regenmortel,Tine
Huizenga,Jacoba
Bolt,Sascha
Wilken,Jean Pierre
Bleijenberg,Nienke
Keady,John
Van Regenmortel,Tine
Abstract
In the Netherlands, where this study was conducted, there are around 800,000 family carers of people with dementia. Research into the needs and priorities of people with dementia and their family carers is crucial for developing tailored care and meaningful support. However, current research lacks attention to the everyday life experiences of caring for someone with dementia at home. Therefore, the research question this study aimed to address was: how do family carers of people with dementia living at home approach and experience their everyday life in a caring context? The study used a qualitative design, underpinned by a phenomenological approach. 15 family carers (10 partners and five adult children) participated in open interviews. Thematic analysis was used to document and structure the data. A member check was performed on the emergent findings through a focus group with six family carers (all care partners). This process resulted in four discrete but interlinked themes that reflected how family carers approach and experience caring at home for a person with dementia, namely: (1) Finding and keeping routines that work; (2) Focussing on small moments; (3) Rebalancing connections; and (4) Thinking ahead. These themes also emphasise the unfolding nature of everyday life that is constantly changing for family carers.
Description
Date
2025-08
Journal Title
Journal ISSN
Volume Title
Publisher
Research Projects
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Journal Issue
Keywords
Citizenship, Dementia, Everyday life, Family carers, Neighbourhood, Psychosocial
Citation
Huizenga, J, Bolt, S, Wilken, J P, Bleijenberg, N, Keady, J & Van Regenmortel, T 2025, ''I do things that I don't really want to do …': Understanding the everyday lives of family carers of people with dementia', Dementia. The International Journal of Social Research and Practice. https://doi.org/10.1177/14713012251368682