Care and support for couples when one partner has young-onset dementia
Year: 2026
Type: dissertation
Study design: Observational Study
Abstract: Background: Young-onset dementia refers to dementia with symptom onset before the age of 65, affecting persons during a life phase typically characterised by employment, family responsibilities, and active social participation. When one partner in a couple has young-onset dementia, both partners are affected, and daily life is reorganised around the condition. Knowledge of how support is accessed and experienced in young-onset dementia remains limited. As a result, it is unclear whether available services meet the specific needs of those affected. Aim: The overall aim of this thesis is to explore and describe support for persons living with young-onset dementia and their partners, and to examine how this support is experienced and adapted over time. Methods: This thesis comprises four studies employing quantitative and qualitative designs. Studies I and II drew on data from SveDem, the Swedish national quality dementia registry, and included persons diagnosed with young-onset dementia (Study I, n=284; Study II, n=2,592). Study I examined post-diagnostic support offered at the time of diagnosis, and Study II analysed factors influencing the time to formal support. Studies III and IV used dyadic semi-structured interviews with couples in which one partner had received a dementia diagnosis before the age of 65 (Study III, n=11 couples; Study IV,n=10 couples). Study III addressed couples' experiences of support in daily life, and Study IV examined how their interactions with formal support systems developed over time. Findings: At diagnosis, most persons were offered information and educational support, while about half were offered contact with a dementia nurse, counsellor, or needs assessor. Over time, living with another adult and having higher cognitive functioning were associated with later access to home help, day care, and care facilities. Qualitative results showed that couples living with young-onset dementia negotiated independence and support in daily life while navigating fragmented support systems with unclear responsibilities and limited coordination. Support was most meaningful when aligned with the couple's daily life and current needs. Three distinct patterns of interaction with formal support were identified: keeping formal support at a distance, initially seeking but gradually stepping back, and persisting in seeking support despite obstacles. These patterns were influenced by service responses to early contact attempts and whether support matched the couple's circumstances. Conclusion: This thesis provides both empirical and theoretical insights into support for couples living with young-onset dementia in Sweden. As partners take on increasing responsibilities, couples might seem to be coping, even when their needs are significant, risking that those needs go unrecognised. Structural fragmentation, both between memory clinics and municipal services and within them, forces couples to navigate the system on their own, often without clear guidance. The findings point to a need for more accessible, proactive, coordinated, and individually tailored support that recognises the couple as a shared unit.
Author: Kårelind, Fanny
Language: English
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W7161206873