Needs of carers participating in support groups and caring for a person with dementia: A focused ethnographic study

Abstract

Aims The aim is to explore and understand how support group participation meets carers’ perceived needs for information and social and emotional support when caring for a person with dementia who lives at home. Design Focused ethnographic design. Methods Participant observations and semi-structured interviews with 25 carers were conducted. An inductive content analysis of the data was performed. Findings Two themes were identified: “Strengthening the sense of self” and “Managing uncertain benefits.” Conclusion Carers’ level of information about dementia was partly met, thereby strengthening their sense of self and joy. Maintaining shared decision-making in financial matters was viewed as an expression of respect and reciprocity. Getting acquainted with peers and dementia coordinators was viewed as emotional and social support but was also used strategically to gain easier access to health care services. By fulfilling their needs, support group meetings became meaningful, which motivated carers to continue providing care.