Reflections on a personalized cognitive rehabilitation intervention: Experiences of people living with dementia and their carers participating in the GREAT trial

ABSTRACT

Cognitive rehabilitation for people living with early-stage dementia improves functional ability in areas targeted in the therapy, but little is known about how participants experience this intervention. This qualitative paper investigates participants’ views about a cognitive rehabilitation intervention in a randomized controlled trial (the GREAT trial) and aims to help explain and interpret the findings and to inform further intervention development. Using in-depth thematic analysis, 43 semi-structured interviews (35 individual and 8 dyadic) were conducted with 25 people living with dementia and 26 family carers from three sites. The person-centred, individualized approach was valued. Some participants’ views about dementia were questioned as a consequence of taking part in the therapy; they considered the effectiveness of the intervention in the context of the progressive nature of the condition. Certain participants continued to be doubtful, focussing on the inevitability of decline, rather than the possibility of reablement. Such views may have influenced engagement. The therapeutic relationship played a vital role as it was how personalized care was provided and participants’ views had changed positively. Therapists engendered greater confidence and reduced anxiety and social isolation. Positive responses support personalized rehabilitative care to address the specific needs of people living with dementia.

KEYWORDS:

• Reablement
• Person-centred care
• Alzheimer’s disease
• Ageing
• Rehabilitation

Acknowledgements

The authors would like to thank all the participants living with dementia and their family supporters who generously contributed their time to be interviewed. The authors thank Ho Yin Chan, Matthew Lewis and Julie Nixon for conducting the interviews and collecting the data. The authors are grateful to the sites where the interviews were conducted: Betsi Cadwaladr University Health Board, Cardiff and Vale University Health Board, and Manchester Mental Health and Social Care Trust.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The GREAT trial was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme (11/15/04). The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.