Abstract

Background Family carers of people with dementia often neglect their own health needs in order to provide care. This has significant impact on their quality of life, use of health care services and ability to provide good care. This study aimed to better understand family carers’ unmet health needs, why these needs are unmet and what can be done to help carers look after their own health better. Methods This study involved a series of qualitative investigations. First, a scoping review of the literature was conducted in July 2017 and eight research experts from many countries were consulted about their current knowledge on this subject. Second, three consultation events with multiple stakeholders (n=50) and four focus groups with carers (n=21) were carried out in Nottinghamshire, UK. The data collected was transcribed verbatim and analysed thematically, following an inductive approach. Results There is a limited number of interventions aimed at promoting health-promoting self-care in carers (n=6). The selected studies were mostly carried out in the USA, used small samples and were focused solely on female carers. Research experts believe that this an under-explored area and provided useful information for future research. Qualitative data suggests that family carers are not receiving the support they need, are they receiving enough opportunities for respite breaks, and feel unable to follow a healthier lifestyle or to focus on their own health needs. Family carers need: 1) more opportunities for peer support among carers; 2) faster/earlier dementia diagnosis and support; 3) more frequent respite breaks, appropriate for carers’ needs; 4) specialized dementia care; 5) dementia awareness and training for health and social care professionals; 6) continuity of care; and 7) more transparent and easier care pathways and legal systems. Conclusions This study identified a limited number of interventions focused on improving health-promoting self-care in carers of people with dementia. Useful information was collected from research experts, carers and other stakeholders to inform for future research and support for carers. This presentation will show further study findings, will discuss these in relation to current policies and will provide recommendations for care and future research.