In this master’s thesis, I provide a theoretical framework through the presentation of various
models for understanding dementia, its risk factors, stages of progression, and different types.
I continue with the topic of social dimensions of dementia, where I focus on the rights and needs
of people with dementia and their relatives. I present dementia as an experience that affects not
only the people with dementia but also their close ones. I present the role of family members in
providing care and support for the person with dementia, as well as the existing forms of
assistance available in this field. In continuation, I address long-term care, the current national
strategy for managing dementia in Slovenia up to 2030, and the role of social work in supporting
people with dementia. The research part is based on a qualitative study conducted with ten
family members who are currently, or were recently, involved in caring for a relative with
dementia. I also included three professionals working in the field of dementia-related care and
support. Their insights provide a broader understanding of caregiving and the needs of informal
caregivers. I primarily explored how informal caregivers experience dementia and the
caregiving period, as well as the changes dementia brings to their everyday lives. I wanted to
know, how support for the person with dementia is organized within the family and what
sources of support caregivers rely on in both their immediate and wider social environments. I
paid particular attention to their awareness of existing support services and rights under long-
term care provisions. Depending on whether the relative with dementia currently resides at
home or in institutional care, I also explored the caregivers’ attitudes toward institutional care.
Most importantly, I wanted to know what changes informal caregivers of people with dementia
hope to see in the future. The findings reveal that caring for a person with dementia is both
emotionally and physically demanding. Informal caregivers report a lack of personal time and
shifts in life priorities. In most cases, caregiving responsibilities fall on a single family member,
which increases the burden and limits opportunities for respite. Respite is mainly found through
day-care centres, home help, and informal companionship, although caregivers often note that
these services are not sufficiently accessible in terms of time and cost. Some caregivers assume
their role with limited knowledge about their rights under long-term care or about available
community services. Based on the findings, I propose several recommendations, including:
improved information at the initial point of contact with health and social services; the
strengthening of interinstitutional collaboration and the systematic inclusion of social work in
the process of planning support for people with dementia; expanded access to psychosocial
support and home-based assistance; strengthened networks of day-care centres and practical
training programmes for family caregivers; developing a model of personal assistance for
people with dementia; and broader public awareness initiatives on dementia.
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