Positive experiences in dementia care-giving: findings from the IDEAL programme

Research output: Contribution to journalArticlepeer-review

Electronic versions

Documents

DOI

  • Catherine Quinn
  • Gill Toms
  • Isla Rippon
    Brunel University
  • Sharon M. Nelis
    University of Exeter
  • Catherine Henderson
    London School of Economics
  • Robin G. Morris
    King's College London
  • Jennifer M. Rusted
    University of Sussex
  • Jeanette M. Thom
    University of New South Wales
  • Eleanor van den Heuvel
    Brunel University
  • Christina Victor
    Brunel University
  • Linda Clare
    University of Exeter
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.

Keywords

  • benefit-finding, gains, meaning, qualitative, satisfaction, uplifts
Original languageEnglish
Pages (from-to)1010-1030
Number of pages21
JournalAgeing and Society
Volume44
Issue number5
Early online date29 Jun 2022
DOIs
Publication statusPublished - May 2024

Total downloads

No data available
View graph of relations