How do Carers of People With an Intellectual Disability With Dementia Experience Their Role and the Support They Receive Through Services?
Bromley, Leslie Andrew
Thesis or dissertation
University of Exeter
Reason for embargo
A request for a standard period of 18 months to enable any papers to be published.
Abstract Background People with an intellectual disability often require carers to provide assistance in their basic living needs and to help them achieve the best quality of life possible. The increased prevalence of dementia in people with an intellectual disability over recent years has prioritised the importance of research into the impact this has had on people with an intellectual disability with dementia, their carers, and their support services. There has been a lack of qualitative studies investigating the experiences of carers for people with an intellectual disability and dementia and their perceptions of services that support them to carry out their role. These carers fulfil an important need within the community and this study explored family and paid carers’ experiences of caring for people who have an intellectual disability with dementia. Method This paper describes a qualitative study that used semistructured interviews to investigate both paid and family carer’s experiences of caring for people with an intellectual disability with dementia. Face-to-face interviews were conducted with 12 carers and the resulting data were analysed using thematic analysis. Results The analysis generated 9 meta-themes including a carer’s identity, transitions in the carer experience, self-care, difficulties in caring, changes to services, recommendations for change, barriers to accessing carer support, sources of support and resources, and sharing carers’ best practice. Conclusions The implications of the results are discussed and recommendations for future research are provided.