”Det bästa som kunde hänt oss var om de hade sett far” : En studie om vad anhöriga till personer med demenssjukdom önskar av anhörigstödet

The aim of this study was to examine what kind of support the relatives to persons with dementia experience they need. The study also aimed to examine what factors affect the relatives’ decision to receive support. Semi-structured interviews were conducted with six relatives to persons with dementia. The empirical data collected from the interviews were analyzed through the concept of role theory and Habermas theory of lifeworld and system. The results showed that the relatives want the support to involve the needs and interests of the individuals. It is important for the relatives to learn about dementia, meet other relatives in support groups and have access to counselling. In order for the relatives to be confident with the support, they wish a clear structure of the organization, professional knowledge of dementia, density of staff, continuity and that the person with dementia are given good care. Factors that affect the relatives’ decision to receive support is the health and ability of the person with dementia, their right to self-determination, and the relatives’ available time