The master's thesis titled »Dementia in the Family - Experiences and the Needs of Relatives« explores the impact of dementia on family life and highlights the experiences and needs of relatives caring for a person with dementia in their home environment. I try to give a voice to those people who live with and care for a person with dementia on a daily basis. The stories of relatives of people with dementia should not be seen as »interesting« life experiences, but as a space for reflection, for examining existing forms of support and for designing new forms of support.
In the theoretical part of the thesis, I first summarise the basic information about dementia, then I list the open themes in understanding dementia as a social phenomenon. In doing so, I interweave different discourses and look for intersections between them, while also making the social pedagogical perspective visible. I deepen the themes with the findings of some national and international research, which illustrate the characteristics of coping and the role of relatives of people with dementia. In the theoretical part, I particularly present how dementia can affect family life, the vulnerability of the family and, on the other hand, also strengthen the resilience of the family. I devote a special chapter to coping with the first signs of dementia, the difficulties and needs of relatives and present the rights of people with dementia and their loved ones.
In the empirical part, I give space to the relatives of people with dementia, analysing their needs, feelings and challenges and encouraging them to think about the forms of support they might need in their life situations. In my master thesis I used a qualitative research approach. I engaged in the research with the understanding that the experiences of relatives of people with dementia are varied and stressful. I obtained data through semi-structured interviews and analysed them using a content analysis method. The sample includes eight people who directly live with and care for a person with dementia.
The results show that the experience of living with a person with dementia is very varied and challenging for the family, requiring constant adaptation. The relatives are overwhelmed and exhausted and express the need for relief and respite. The interviewees gave personal insights into their experiences of living with a person with dementia over the years, and made suggestions that included education and awareness-raising about dementia and different forms of support that can give them opportunities to improve their quality of daily life. The proposals also aim at upgrading the existing systemically accessible services.
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