["I can live with it, if it doesn't get worse"-Caregivers of people with dementia in Austria talk about their needs and experiences]

Abstract

Background: Family members undertake a large proportion of the care of people living with dementia. The purpose of this study was to explore the needs and caring experiences of family caregivers of people with dementia in Austria, who were organized in a self-help group.

Methods: Using an explorative, qualitative research design, data were collected through 1 focus group and 3 in-depth interviews with a total of 10 family caregivers of people with dementia from a self-help group. An inductive qualitative analysis was applied and resulted in four themes: frightening images of dementia in society, continuity and conflicts in the relationship to the person with dementia, caring for one's own health and lack of support and community.

Results: Continuity in the relationship to and joint activities with the person with dementia were positively described but simultaneously the frequently occurring conflicts were described as burdensome. Also described were bureaucratic, structural and financial hurdles for the utilization of support services. The existing support systems offered were mostly judged to be inadequate, inaccessible or unaffordable. The participating caregivers described the communication of the diagnosis of dementia in the environment as a prerequisite for support in the community.

Discussion: Destigmatization and the further development of dementia-specific support offers and self-help groups for caring relatives and people living with dementia could represent further steps forward. Communicating the dementia diagnosis in the social environment and community seems to be an important but difficult step for caregivers organized in a self-help group.

Keywords: Activities; Care; Cognitive disorder; Health; Qualitative methods.