Living well with dementia: a qualitative interview study on family caregivers’ call for more person- and family-centered dementia support

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Abstract
Background: Family members are often the primary caregivers for individuals with dementia, but they face significant challenges in navigating health care and social services, especially as the disease progresses. Many caregivers experience loneliness, social isolation, and stress from sacrificing their own well-being. This study aimed to describe the daily experiences of family caregivers of individuals with dementia, with the objective of better understanding and addressing their specific needs. Methods: Qualitative interviews with 11 family caregivers in Sweden. Data were analyzed by inductive thematic analysis. Results: Three themes were identified: (1) Struggling with conflicting emotions and social challenges - caregivers reported experiencing stress, physical exhaustion, and emotional strain due to constant availability and the challenges of managing behavioral changes, further intensified by isolation and shrinking social networks. (2) Balancing autonomy in care decisions - caregivers described the paradox of bearing full responsibility for care decisions despite having limited access to information, and, (3) Dependence on home care and nursing homes that are not adapted to needs - caregivers expressed a reliance on home care and nursing homes, yet noted that these services are often ill-equipped to address the specific demands of dementia care. Conclusion: Caring for a family member with dementia reshapes family roles and creates ongoing challenges in balancing safety, well-being, and limited support. This study highlights the need for person- and family-centered care, grounded in the home context and developed in partnership with family caregivers. Improved coordination, trained staff, and supportive policies are essential, alongside continued conceptual development to define best practices in dementia care.
Funding Information
  • Karolinska Institute

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