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Community-based dementia care re-defined: Lessons from Iceland.
Margrét Gudnadottir1, Christine Ceci2, Marit Kirkevold3
1Faculty of Nursing, University of Iceland, Reykjavik, Iceland.
Health & Social Care in the Community
|September 5, 2020
Summary
Family caregivers of people with dementia often feel unsupported by formal services. Professionals focus on specialized dementia care, neglecting practical daily needs, highlighting a gap in community support.
Area of Science:
- Gerontology
- Public Health
- Social Work
Background:
- Families caring for individuals with dementia at home frequently report feeling neglected by authorities.
- There is a growing need to understand how formal services can better support these family caregivers.
- This study examines healthcare and social care professionals' perspectives on the needs of community-dwelling dementia caregivers.
Purpose of the Study:
- To analyze how health and social care professionals perceive the needs of families caring for persons with dementia in the community.
- To describe the current contributions of the formal care system to these families.
- To identify gaps and potential improvements in formal support systems for dementia caregivers.
Main Methods:
- Qualitative study design.
- Involved interviews with 20 healthcare and social care professionals.
- Utilized field observations and analysis of public documents, with data analyzed using the framework method.
Main Results:
- Professionals primarily viewed services as specialized, focusing on dementia diagnosis and treatment, deeming daily life support a private family matter.
- Primary care, community-based healthcare, and home care services were perceived as inadequately equipped to support these families.
- While acknowledging caregiver stress and the need for earlier support, professionals felt powerless, though service redesigns began emphasizing primary care.
Conclusions:
- Current formal services often fail to meet the holistic needs of families caring for people with dementia at home.
- Professionals' specialized focus overlooks crucial practical support, leaving families feeling abandoned.
- Primary care, with its potential for a holistic and family-centered approach, is well-positioned to integrate relational understanding and specialized dementia care.
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