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Title: Positive experiences in dementia care-giving: findings from the IDEAL programme
Authors: Quinn, C
Toms, G
Rippon, I
Nelis, SM
Henderson, C
Morris, RG
Rusted, JM
Thom, JM
van den Heuvel, E
Victor, C
Clare, L
Keywords: benefit-finding;gains;meaning;qualitative;satisfaction;uplifts
Issue Date: 29-Jun-2022
Publisher: Cambridge University Press
Citation: Quinn, C., Toms, G., Rippon, I., Nelis, S.M., Henderson, C., Morris, R.G., Rusted, J.M., Thom, J.M., van den Heuvel, E., Victor, C. and Clare, L. (2022) 'Positive experiences in dementia care-giving: findings from the IDEAL programme', Ageing and Society, 0 (in press), pp. 1 - 21. doi: 10.1017/s0144686x22000526.
Abstract: Copyright © The Author(s), 2022. There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences.
Description: Data: IDEAL data were deposited with the UK Data Archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found at
Ethical standards: IDEAL was approved by the Wales Research Ethics Committee 5 (reference 13/WA/0405), the Scotland A Research Ethics Committee (reference 14/SS/0010) and the Ethics Committee of the School of Psychology, Bangor University (reference 2014-11684).
ISSN: 0144-686X
Appears in Collections:Dept of Health Sciences Research Papers

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