Affiliation:
1. Institute of Social Work HU University of Applied Sciences Utrecht The Netherlands
2. Research Center Social Innovation HU University of Applied Sciences Utrecht The Netherlands
3. Department of Tranzo School of Social and Behavioral Sciences Tilburg University Tilburg The Netherlands
4. Research Center Healthy & Sustainable Living HU University of Applied Sciences Utrecht The Netherlands
5. Department Julius Center for Health Sciences and Primary Care University Medical Center Utrecht Utrecht The Netherlands
6. Division of Nursing Midwifery and Social Work/Greater Manchester Mental Health NHS Foundation Trust The University of Manchester Manchester UK
7. HIVA—Research Institute for Work and Society Faculty of Social Sciences University of Leuven Leuven Belgium
Abstract
AbstractObjectivesResearch on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home.MethodsInspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co‐researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings.FindingsSix dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society.ConclusionsFor people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person‐centred support.
Subject
Psychiatry and Mental health,Geriatrics and Gerontology
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