My master's thesis focuses on the challenges of family caretakers who provide care in the home environment for people dealing with dementia. I conceived the notion for this study during my studies at postgraduate level, when I was researching long-term care in the community. I have become aware of a new social risk called dependency on the care of another, which is a double social risk, as it can push both the person who needs help and the person who provides it into distress. I was particularly dismayed that this problem is on the rise in modern society and that community-based formal care is not in line with the needs of people with dementia and their caretakers. The thesis is divided into two parts - a theoretical part and a research part. In the first part, I have written about the demographic changes that are increasingly being felt in different areas of life and which point to the need for changes in social security systems and policies. I have also defined dementia, the different epistemologies of understanding the phenomenon and the participation of the social work profession in the relationship with all stakeholders. A strong emphasis has been placed on presenting an integrated (holistic) approach, including the concept of empowerment, skills for action and respectful communication.
I have also identified who informal caretakers are as well as the challenges they face in the day-to-day care of an older person with dementia. At the same time, I have presented the care network in Slovenia and the challenges of long-term care, especially in the field of community care. In the second, exploratory part, I have researched the challenges of family caretakers of people with dementia through qualitative research. The aim of the research was to gather data that would highlight the challenges faced by family caretakers who may be overwhelmed and burnt out due to inadequate formal support in providing care. I believe that the challenges of caretakers of people with dementia are already known, but concrete changes that people in the community would feel have not yet taken place, especially in the municipality of Brežice. I think that it is important to draw attention to the issue, to refresh it with fresh data that can be a source for planning change.
Through interviews, I have explored the perspective of family caretakers. I was particularly interested in what their daily lives are like, how care is provided, what are the factors in care, which make them happy, and what are the stresses.
I have also asked them how they balance work and private life and who in their formal and informal network helps them to do so. I have also wanted to know how they take care of their own needs and what concrete suggestions they have for improvements in terms of community support to facilitate and improve the quality of care for an older person with dementia. From the qualitative data, I have learned that the daily care of a person with dementia strongly influences the lifestyle of the family caretaker and the whole family. It showed that family caretakers are overwhelmed (physically, mentally, and financially) and find themselves looking for their own sources of support, but are often overlooked. There is a lack of organized support from the community regarding the support family caretakers in their caring role. Family takers participate in all phases of care (planning, action and evaluation), thus ensuring a better quality of life for families where care for an older person with dementia is established.
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