User participation among people with dementia living at home

ABSTRACT

The study explored the experiences and attitudes to user participation among people with dementia, who are living at home. User participation was understood as participation in decision-making. Seven Norwegian persons with dementia and living at home were interviewed once about their experiences of participating in decision-making at home and at the day care centre. The interview data were thematically analysed. The results showed that most participants were more prominently excluded from decision-making at the day care centre than at home. At the day care centre, the participants found few opportunities for participation in decision-making offered by the professional caregivers, and they felt compelled to adjust to the group’s needs. At home the participants had difficulties in coping with the role switch between the couple and there was a mismatch between the expectations of the spouses and the capabilities of the persons with dementia. The participants felt that they were a burden on their spouses, which prevented them from expressing their wishes. This study shows that to understand user participation among people with dementia living at home, both the context of the decisions and the social relations of the person with dementia must be considered.

KEYWORDS:

• Dementia
• user participation
• decision-making
• living at home

Additional information

Funding

This work was supported by the EkstraStiftelsen Helse og Rehabilitering;