"I want everything to be discussed honestly" – home-dwelling people living with dementia negotiating their psychosocial needs

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Front cover: Advance Access
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Published: Jun 8, 2026
DOI: https://doi.org/10.3384/ijal.1652-8670.5984
Keywords:
dementia, home-dwelling, psychosocial needs, qualitative study, quality of life

Main Article Content

Mari Heitto
Faculty of Social Sciences (Health Sciences) and Gerontology Research Center Tampere University, Finland
https://orcid.org/0000-0002-9853-5198
Jari Pirhonen
Faculty of Social Sciences (Health Sciences) and Gerontology Research Center Tampere University, Finland
https://orcid.org/0000-0002-8889-6432
Jenni Kulmala
Faculty of Social Sciences (Health Sciences) and Gerontology Research Center Tampere University, Finland
https://orcid.org/0000-0003-0194-5551
Mari Aaltonen
Older People Services, Finnish Institute for Health and Welfare, Finland and Gerontology Research Center Tampere University, Finland

Abstract

Dementia presents significant challenges for individuals’ well-being, mak­ing it crucial for others to understand their psychosocial needs to provide holistic care and support. This qualitative study examined the psychoso­cial needs of home-dwelling people living with dementia, as described by people with dementia and their partners. The data consist of 20 in-depth interviews with 33 home-dwelling participants, including 14 people with dementia and 19 partners aged 62–88. A data-driven thematic analysis was conducted, followed by a theory-driven analysis in three phases. As a result, seven main themes of psychosocial needs were identified. These themes complemented existing models and highlighted the intertwined nature of psychosocial needs. People with dementia are not only aware of their psychosocial needs, but also assertively express them and advocate for their acknowledgement. These findings highlight the importance of addressing psychosocial needs to improve care and enhance the quality of life for people living with dementia.

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Author Biographies

Mari Heitto, Faculty of Social Sciences (Health Sciences) and Gerontology Research Center Tampere University, Finland

Mari Heitto is PhD student at the Faculty of Social Sciences at the University of Tampere. Her research interests focus particularly on the experiences of people living with dementia and the factors related to their quality of life.

Jari Pirhonen, Faculty of Social Sciences (Health Sciences) and Gerontology Research Center Tampere University, Finland

Jari Pirhonen is a Senior Research Fellow at the Faculty of Social Sciences (Health Sciences) and Gerontology Research Center at Tampere University and at the Faculty of Social Sciences at the University of Helsinki. He is interested in well-being in old age and long-term care for older adults. His current research topics include social death in nursing homes and dementia both as a personal situation and as a societal phenomenon.

Jenni Kulmala, Faculty of Social Sciences (Health Sciences) and Gerontology Research Center Tampere University, Finland

Jenni Kulmala is Professor of Gerontology at the Faculty of Social Sciences (Health Sciences) and Gerontology Research Center at Tampere University. Her research interests include aging ang life-course, physical and cognitive health of older people and dementia.

Mari Aaltonen, Older People Services, Finnish Institute for Health and Welfare, Finland and Gerontology Research Center Tampere University, Finland

Mari Aaltonen is a Chief Researcher at the Finnish Institute for Health and Welfare and a Visiting Senior Researcher at the Faculty of Social Sciences (Health Sciences) and Gerontology Research Center Tampere University, Finland. She has the title of Docent in Social Policy. Her research interests include ageing, health and social care policy, long-term care, home care, dementia, care needs, and unmet needs of older people.

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