Right At Home: Living with Dementia and Multi-morbidities

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 multimorbidities presents critical challenges for homecare worldwide. Healthcare 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 homecare from the multiple perspectives of people living with dementia and multimorbidities and homecare workers providing support. Findings draw from qualitative semi-structured interviews with people with dementia (n=2), their partners (n=2), other partners or family carers (n=6) and homecare workers (n=26). Three themes are identified: (a) the preference for and value of home; (b) inadequate homecare provision and enhanced care-burden; (c) limited training and education. Despite continued calls for homecare investment, the focus on reduction in costs hides key questions and further dialogue 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 critically discuss what this may mean for people living with dementia and consider the implications for corequisite policy development to optimise available homecare support. Keywords: dementia, multimorbidities, homecare, independent-living, social rights