Health-Promoting Self-Care in Family Caregivers of People With Dementia: The Views of Multiple Stakeholders

• Published in: The Gerontologist 2019-09, Vol.59 (5), p.e501-e511
• Main Authors: Oliveira, Deborah, Zarit, Steven H, Orrell, Martin
• Format: Article
• Language: English
• Subjects: Activities of daily living; Caregivers; Consciousness; Continuity of care; Dementia; Families & family life; Focus groups; Health behavior; Health care policy; Health promotion; Health services; Interest groups; Needs; Older people; Qualitative research; Research design; Stakeholders
• ISSN: 0016-9013; 1758-5341
• DOI: 10.1093/geront/gnz029

Abstract Background and Objectives Family carers often experience difficulties managing their own needs, which can lead to ill health. This study aimed to explore the views of carers and other stakeholders about the factors related to health-promoting self-care behavior in family carers of people with dementia. Research Design and Methods This multimethod qualitative study involved three consultation events with multiple stakeholders (n = 46) and four focus groups with carers (n = 27). Anonymous notes were collected from the consultation events. Focus group discussions were tape recorded and transcribed verbatim. Inductive thematic analysis was used to analyze the data. Results Two overarching themes were identified and labeled “Services” and “Individual factors.” Poor service organization and coordination, lack of respite breaks, lack of continuity of care, poor staff attitudes, as well as difficulty to prioritize own needs, health impact, financial impact, and relationships and feelings were related poorer carer health-promoting self-care behavior. Limited health-promoting self-care often led to situations of crisis, which were related to carers’ health issues, need for emergency services, and unanticipated care home placement. Carers require high-quality respite to have more time to themselves, support from better coordinated and compassionate services, and more education and awareness about their own needs. Discussion and Implications There are several factors that may limit carers’ involvement with health-promoting self-care activities, which may affect their own health, on the care provided to their relatives and on service use. Future research and policy need to consider how to better support cares to manage their own health issues.