Socially sustainable care: participation and care poverty of persons with dementia and their informal carers
Main funder
Funds granted by main funder (€)
- 233 800,00
Project timetable
Project start date: 01/07/2023
Project end date: 30/06/2026
Summary
This project is about daily life and experiences of participation and care poverty of community-dwelling older persons with dementia and their carers. The data consists of diaries, interviews and register data.
We want to question the prevailing understanding of dementia as an individual’s illness and bring forth the voice and personal views of those living with dementia and their close ones. Persons with dementia and their informal carers are surprisingly invisible, considered that in Finland already 200 000 persons have dementia, and the number is foreseen to double or even triple by 2050 (WHO 2019; Viramo & Sulkava 2015). In addition, it is estimated that some 700 000 Finns of working age help their close one because of age, illness, or disability (Kauppinen & Silfver-Kuhalammi 2015).
This research project has both scientific and societal aims. We develop novel theoretical understanding by building a socio-relational model of dementia. This model takes into account the experiences of persons with dementia and how social rights and participation are fulfilled in terms of, for example, receiving adequate services. This is combined with the focus on social wellbeing and social relations. Ultimately, we aim to provide new understanding on how the daily lives, care and services can be organized in socially sustainable ways.
Another scientific aim of this project is to develop further the concept of care poverty (Kröger 2010; 2022; Kröger ym. 2019) to encompass also the unmet needs of informal carers. It has been shown that older persons with memory problems have more often unmet needs than others (Aaltonen & Van Aerschot 2021), but we lack qualitative research on risks and nature of care poverty.
We want to question the prevailing understanding of dementia as an individual’s illness and bring forth the voice and personal views of those living with dementia and their close ones. Persons with dementia and their informal carers are surprisingly invisible, considered that in Finland already 200 000 persons have dementia, and the number is foreseen to double or even triple by 2050 (WHO 2019; Viramo & Sulkava 2015). In addition, it is estimated that some 700 000 Finns of working age help their close one because of age, illness, or disability (Kauppinen & Silfver-Kuhalammi 2015).
This research project has both scientific and societal aims. We develop novel theoretical understanding by building a socio-relational model of dementia. This model takes into account the experiences of persons with dementia and how social rights and participation are fulfilled in terms of, for example, receiving adequate services. This is combined with the focus on social wellbeing and social relations. Ultimately, we aim to provide new understanding on how the daily lives, care and services can be organized in socially sustainable ways.
Another scientific aim of this project is to develop further the concept of care poverty (Kröger 2010; 2022; Kröger ym. 2019) to encompass also the unmet needs of informal carers. It has been shown that older persons with memory problems have more often unmet needs than others (Aaltonen & Van Aerschot 2021), but we lack qualitative research on risks and nature of care poverty.
Principal Investigator
Other persons related to this project (JYU)
Primary responsible unit
Web page
https://www.muistisairaatyhteiskunnassa.fi
Follow-up groups
- Active ageing and care (University of Jyväskylä JYU) AAC
- Centre of Excellence in Research on Ageing and Care (Department of Social Sciences and Philosophy YFI) ; 2018-2025
- School of Wellbeing (University of Jyväskylä JYU) JYU.Well
- Social and Public Policy (Department of Social Sciences and Philosophy YFI) YKP
Free keywords
Dementia, informal care, care poverty, participation, socially sustainable care
