Capabilities and care : a qualitative exploration of the lives of carers of people living with dementia in Northumberland

Abstract

In the UK, the number of people living with dementia is predicted to double to two million by 2040. As a result, more families will be caring for a relative with dementia for longer and seeking to meet their increasingly complex support and care needs. Counties like Northumberland, with ageing populations characterised by outward migration of younger people and inward migration of older people, are challenged to provide the necessary care and support to a growing population of older people living with dementia. The challenges are especially pronounced when a high proportion of the population resides in rural communities marked by limited local amenities, inadequate public transport and often considerable distances from hospitals and other health services. Using a standpoint theory approach, this qualitative study assesses the injustices and well being of family carers of people living with dementia in Northumberland. Drawing on a relational ethics of care and a theoretical framework guided by the capability approach, the study explores carer capabilities by examining the health and social, spatial, and personal experiences of family carers and the impacts on their well-being. Based on in-depth interviews with 27 family carers, the study examines how key injustices intersect. The focus is on the complexities of care and caring relationships that are shaped by both personal and contextual factors. Within the context of limitations and deficits of the health and social care system and the local built environment, personal characteristics, including the type and stage of dementia, feelings of duty and obligation, expectations of care, and emotional drivers are shown to impact family carer well-being by diminishing their ability to convert capabilities into functionings or outcomes.