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. 2024 Nov;32(11):1309-1321.
doi: 10.1016/j.jagp.2024.05.012. Epub 2024 Jun 6.

Living Alone With Mild-to-Moderate Dementia Over a Two-Year Period: Longitudinal Findings From the IDEAL Cohort

Linda Clare  1 , Laura D Gamble  2 , Anthony Martyr  3 , Catherine Henderson  4 , Martin Knapp  4 , Fiona E Matthews  5 ; IDEAL study team
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Free article

Living Alone With Mild-to-Moderate Dementia Over a Two-Year Period: Longitudinal Findings From the IDEAL Cohort

Linda Clare et al. Am J Geriatr Psychiatry. 2024 Nov.
Free article

Abstract

Objectives: To compare the experiences of people with dementia living alone or with others and how these may change over two years.

Design: We analysed longitudinal data from three assessment waves, one year apart, in the British IDEAL cohort.

Setting: Participants with mild-to-moderate dementia were recruited through National Health Service providers, where possible with a family caregiver, and interviewed at home.

Participants: The current analyses include 281 people with dementia living alone and 1,244 living with others at baseline; follow-up data were available for 200 and 965 respectively at time 2 and 144 and 696 respectively at time 3. For those living alone, 140 nonresident caregivers contributed at baseline, 102 at time 2 and 81 at time 3. For those living with others, 1,127 family caregivers contributed at baseline, 876 at time 2 and 670 at time 3.

Measurements: Assessments covered: cognitive and functional ability; self-reported perceptions of health, mood, social engagement, quality of life, satisfaction with life and well-being; use of in-home and community care; and transitions into residential care.

Results: People living alone tended to have better cognitive and functional ability and were more frequent users of in-home care. However, they experienced poorer physical, social, and psychological health and reduced quality of life, satisfaction with life, and well-being. These differences persisted over time and rates of transition into residential care were higher.

Conclusions: To facilitate continuing in place for people with dementia living alone, a dual focus on supporting functional ability and add ressing psychosocial needs is essential in the context of an enabling policy framework.

Keywords: Alzheimer's disease; aids and adaptations; assets and resources; service use; social capitals; vascular dementia.

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Conflict of interest statement

DISCLOSURES The authors declare no conflicts of interest. ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by theEconomic and Social Research Council (ESRC)and theNational Institute for Health and Care Research (NIHR)through grantES/L001853/2. Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J.A. Pickett, C. Quinn, J. Rusted, J. Thom. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer's Society, grant number 348, AS-PR2-16-001. Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, J. Rusted. This report is independent research supported by the National Institute for Health and Care Research Applied Research Collaboration South-West Peninsula. The views expressed in this publication are those of the authors and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service, or Alzheimer's Society. The support of ESRC, NIHR and Alzheimer's Society is gratefully acknowledged.

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