Right at home: living with dementia and multi-morbidities

Abstract

Abstract Dementia is recognised as the biggest health crisis of our time in terms of high personal and social costs and wider impact on health and social care systems. Increases in people living with dementia and multi-morbidities presents critical challenges for home care worldwide. Health-care systems struggle to provide adequate home-care services, delivering limited care restricted to a single-condition focus. This study explored the experiences and expectations of home care from the multiple perspectives of people living with dementia and multi-morbidities and home-care workers providing support. Findings draw from qualititative semi-structured interviews with people with dementia (N = 2), their partners (N = 2), other partners or family carers (N = 6) and home-care workers (N = 26). Three themes are identified: (a) the preference for and value of home; (b) inadequate home-care provision and enhanced care burden; and (c) limited training and education. Despite continued calls for home-care investment, the focus on reduction in costs hides key questions and further dialogue is required exploring how people with dementia can be supported to live independently and flourish at home. This study considers these complex experiences and care requirements through the prism of disability and human rights frameworks. This paper concludes with consideration of more recent human social rights debate. We discuss critically what this may mean for people living with dementia and consider the implications for co-requisite policy development to optimise available home-care support.