Lack of support for younger people with dementia
Being diagnosed with dementia in the middle of working life is life-changing. New research from Jönköping University (JU) shows that younger people with dementia and their partners often receive insufficient support, which can lead to financial problems, poorer quality of life and increased strain on the relationship.
Genrebild. Foto: Hanna Balan / Unsplash
Around 10 000 people in Sweden under the age of 65 are living with dementia. The onset of the disease at working age often coincides with a life of work, family responsibilities and social relationships. This makes the situation particularly challenging - not only for the person with dementia, but also for their partner and their everyday life together.
In a forthcoming dissertation, Fanny Kårelind, PhD student at the School of Health and Welfare, Jönköping University, has investigated how support for younger people with dementia and their partners is organized, offered and experienced over time.
The thesis comprises four studies and is based on both register data from SveDem, the national quality register for dementia diseases, and on interviews. A total of ten cohabiting couples were interviewed where one partner was diagnosed with dementia before the age of 65. The couples were followed regularly over a period of eighteen months.
"When one partner in a couple is diagnosed with dementia, both are affected and daily life together is fundamentally changed. Despite increasing research in the field, there is limited knowledge about how support is organized, received and experienced by couples living with dementia at a younger age," says Fanny Kårelind.
A consistent finding is that dementia at a younger age often has clear financial consequences. When one partner develops cognitive difficulties, the other often takes on more responsibility in the home, which can make it difficult to work full-time. At the same time, financial support for the partner who is not ill is limited, leading to increased financial vulnerability for the household.
Support designed for older people
The thesis further shows that many support interventions are designed around the needs of older people. Day care and group activities are often perceived as poorly adapted to younger people's interests, physical conditions and life situation. In the absence of meaningful activities, relatively young people with dementia risk becoming isolated or completely dependent on their partner.
It also emerges that couples continuously negotiate the balance between receiving support and maintaining independence. Support is perceived as most meaningful when it fits into the couple's everyday life and is adapted to their current needs.
A recurring problem identified is a lack of coordination between regional memory clinics and municipal support services. Many couples find it difficult to know where to turn and who is responsible for what. The lack of a clear contact person means that couples often have to coordinate efforts and drive the process forward themselves, which is described as energy-consuming.
At the same time, the results indicate that memory clinics often function well as a stable and coherent care contact, which contrasts with the experience of the municipal support system.
Need for more coordinated support
Overall, the research shows that younger couples with a partner living with dementia find themselves in a gap in the current support system. When support is mainly designed around the needs of older people, there is a risk that both the couple's joint situation and the long-term consequences for finances and health are overlooked.
"The results point to the need for more proactive, coordinated and individually tailored support that recognizes the couple as a common unit and that better meets the special challenges of dementia at a younger age," says Fanny Kårelind.
Fanny Kårelind will defend her dissertation on June 5 with the thesis Care and support for couples when one partner has young-onset dementia.
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