Living Alone with Mild-To-Moderate Dementia: Findings from the IDEAL Cohort

Article type: Research Article

Authors: Clare, Linda^{a; *} | Martyr, Anthony^a | Henderson, Catherine^b | Gamble, Laura^c | Matthews, Fiona E.^c | Quinn, Catherine^d | Nelis, Sharon M.^a | Rusted, Jennifer^e | Thom, Jeanette^f | Knapp, Martin^b | Hart, Nicola^g | Victor, Christina^h

Affiliations: [a] REACH: The Centre for Research in Ageing and Cognitive Health, College of Medicine and Health, University of Exeter, St Luke’s Campus, Exeter, UK | [b] Personal Social Services Research Unit>, London School of Economics and Political Science, London, UK | [c] Institute for Health and Society, Newcastle University, Newcastle, UK | [d] Centre for Applied Dementia Studies, University of Bradford, Bradford, UK | [e] School of Psychology, University of Sussex, Brighton, UK | [f] School of Medical Sciences, University of New South Wales, Sydney, Australia | [g] Research Development and Evaluation, Alzheimer’s Society, London, UK | [h] College of Health and Life Sciences, Brunel University London, London, UK

Correspondence: [*] Correspondence to: Professor Linda Clare, Centre for Research in Ageing and Cognitive Health, College of Medicine and Health, University of Exeter, Exeter EX1 2LU, UK. Tel.: +44 0 1392 726229; E-mail: l.clare@exeter.ac.uk.

Abstract: Background:A significant proportion of people with dementia live alone, but little is known about their specific needs. Objective:To understand the profile of people living alone with mild-to-moderate dementia in the UK and identify any systematic differences associated with living situation. Methods:We analyzed cross-sectional data from 1,541 people with mild-to-moderate dementia and 1,277 caregivers participating in the IDEAL cohort at the first wave of assessment. Results:There were 1,256 (81.5%) people with dementia living with others and 285 (18.5%) living alone, of whom 51 (3% of whole sample) reported little or no informal support. There were relatively few differences associated with living situation and odds ratios were generally small. People living alone were older on average, and more likely to be female, than those living with others. Those living alone were more likely to have higher cognitive ability and self-reported functional ability, and more social contact with those from other households. They were also lonelier, expressed less satisfaction with life, and used home care services and equipment more. There were no differences in symptoms, mood, quality of life, or well-being. Conclusion:The findings support the view that it is possible to ‘live well’ with mild-to-moderate dementia while living alone, given appropriate support, including home care and equipment. Nevertheless, it is important to consider how those living alone may be supported to have a more satisfactory experience, and how health and social care services can best respond to their needs.

Keywords: Aids and adaptations, Alzheimer’s disease, service use, social capitals, assets and resources, vascular dementia

DOI: 10.3233/JAD-200638

Journal: Journal of Alzheimer's Disease, vol. 78, no. 3, pp. 1207-1216, 2020