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Future outlook of people living alone with early-stage dementia and their non-resident relatives and friends who support them

Published online by Cambridge University Press:  27 April 2020

Janet Heaton Open the ORCID record for Janet Heaton [Opens in a new window] ,
Anthony Martyr ,
Sharon M. Nelis ,
Ivana S. Marková ,
Robin G. Morris ,
Ilona Roth ,
Robert T. Woods  and
Linda Clare
Janet Heaton*
Affiliation:
Rural Health and Wellbeing, Institute of Health Research and Innovation, Centre for Health Science, University of the Highlands and Islands, Inverness, UK
Anthony Martyr
Affiliation:
Centre for Research in Ageing and Cognitive Health (REACH), University of Exeter, Exeter, UK
Sharon M. Nelis
Affiliation:
Centre for Research in Ageing and Cognitive Health (REACH), University of Exeter, Exeter, UK
Ivana S. Marková
Affiliation:
Hull York Medical School, University of Hull, Hull, UK
Robin G. Morris
Affiliation:
King's College London, Institute of Psychiatry, Psychology and Neuroscience, London, UK
Ilona Roth
Affiliation:
School of Life, Health and Chemical Sciences, STEM Faculty, The Open University, Milton Keynes, UK
Robert T. Woods
Affiliation:
Dementia Services Development Centre, Bangor University, Bangor, UK
Linda Clare
Affiliation:
Centre for Research in Ageing and Cognitive Health (REACH), University of Exeter, Exeter, UK
*
*Corresponding author. Email: janet.heaton@uhi.ac.uk
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Abstract

Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for ‘as long as possible’. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion.

Keywords

advance care planningAlzheimer's diseaseexperienceshopes and fearsinformal carersqualitative secondary analysistemporal orientationtime
Type
Article
Information
Ageing & Society , Volume 41 , Issue 11 , November 2021 , pp. 2660 - 2680
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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