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  • Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial

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Neurodegeneration
Research paper
Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial
  1. Georgina Charlesworth1,
  2. Karen Burnell2,
  3. Nadia Crellin3,
  4. Zoe Hoare4,
  5. Juanita Hoe5,
  6. Martin Knapp6,
  7. Ian Russell7,
  8. Jennifer Wenborn8,
  9. Bob Woods9,
  10. Martin Orrell10
    1. 1UCL Research Department of Clinical, Educational and Health Psychology, London, UK
    2. 2School of Health Sciences and Social Work, University of Portsmouth, Portsmouth, UK
    3. 3North East London NHS Foundation Trust, Ilford, UK
    4. 4NWORTH Clinical Trials Unit, Bangor University, Bangor, UK
    5. 5Division of Psychiatry, University College London, London, UK
    6. 6London School of Economics, London, UK
    7. 7Swansea University Medical School, Swansea, UK
    8. 8Division of Psychiatry, University College London, London, UK
    9. 9DSDC Wales, Bangor University, Bangor, UK
    10. 10Institute of Mental Health, University of Nottingham, Nottingham, UK
    1. Correspondence to Dr Georgina Charlesworth, UCL Research Department of Clinical, Educational and Health Psychology, 1-19 Torrington Place, London WC1E 7HB, UK; g.charlesworth{at}ucl.ac.uk

    Abstract

    Objective The objective of this study was to evaluate peer support and reminiscence therapy, separately and together, in comparison with usual care for people with dementia and their family carers.

    Design Factorial pragmatic randomised trial, analysed by treatment allocated, was used for this study.

    Setting The trial ran in Community settings in England.

    Participants People with dementia and their family carers were the participants.

    Interventions Treatment as usual (TAU) plus one of the following: one-to-one peer support to family carers from experienced carers (Carer Supporter Programme; CSP), group reminiscence therapy (Remembering Yesterday, Caring Today; RYCT) for people with dementia and carers, both or neither.

    Main outcome measures Primary outcomes included health-related quality of life (SF-12) for carers and quality of life (QoL-AD) for people with dementia; secondary outcomes included quality of relationship for carers and people with dementia; both were collected by blinded assessors at baseline, 5 and 12 months (primary end point).

    Results Of 291 pairs recruited, we randomised 145 (50%) to CSP (71% uptake) and 194 (67%) to RYCT (61% uptake). CSP and RYCT, separately or together, were not effective in improving primary outcomes or most secondary outcomes. For CSP versus ‘no CSP’, adjusted difference in means was 0.52 points on the SF-12 (95% CI −1.28 to 2.32) and −0.08 points on the QoL-AD (95% CI −1.70 to 1.56). For RYCT versus ‘no RYCT’, the difference was 0.10 points on the SF-12 (95% CI −1.72 to 1.93) and 0.51 points on the QoL-AD (95% CI −1.17 to 2.08). However, carers reported better relationships with the people with dementia (difference 1.11, 95% CI 0.00 to 2.21, p=0.05). Comparison of combined intervention with TAU, and of intervention received, suggested differential impacts for carers and persons with dementia.

    Conclusions There is no evidence from the trial that either peer support or reminiscence is effective in improving the quality of life.

    Trial registration number ISRCTN37956201; Results.

    This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

    https://doi.org/10.1136/jnnp-2016-313736

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      Footnotes

      • Collaborators Fiona Poland is the PPI lead for this study.

      • Contributors GC, BW, IR and MO participated in the design and conduct of all stages of the research. JH was programme coordinator, ZH was trial statistician, MK was health economics adviser and IR was methodological adviser. JW, NC and KB were trial managers at different states of the research. RYCT Consultant and trainer was Pam Schweitzer. JW oversaw provision of the RYCT intervention throughout the study, with groups led locally by Yvette Kusel, Janet Jones, Caroline O'Haire, Jackie Illes, Barbara Parkinson, Dianne Collins, Gurjinder Loyal and Rebecca Whitaker. Shaheen Ahmed gathered data on CSP intervention provision from local CS Coordinators Anne Loxham, Mary Woodford, Maggie Playle, Liz Sturgess, Doreen Harrison and Lumbini Vithana. Researchers Nadia Crellin, Elizabeth Harte, Alexandra Feast, Nina Melunsky, Emma Patten, Teresa Sullivan, James Sinclair and Deepak Sankhla collected and entered data from participating carers and people with dementia. GC, KB, NC, ZH, JH, MK, IR, JW, BW and MO participated in all stages of manuscript preparation and approved the final version. GC is the guarantor.

      • Funding The SHIELD research programme was sponsored by the North East London NHS Foundation Trust and funded by the National Institute for Health Research (NIHR) programme grant number RP-PG-0606-1083. Additional sources of funding for each site: North East London; Central and East London CLRN (CEL1042): Northampton; Leicestershire, Northamptonshire, and Rutland CLRN and Thames Valley DeNDRoN: Norwich; Norfolk & Suffolk Health Innovation and Education Cluster (HIEC) and East Anglia DeNDRoN: Berkshire; and Thames Valley CLRN and Thames Valley DeNDRoN. The views expressed are those of the authors and do not necessarily reflect those of the NHS, NIHR or the Department of Health.

      • Competing interests None declared.

      • Patient consent Consent was obtained from patients.

      • Ethics approval Outer North East London Research Ethics Committee approved this study.

      • Provenance and peer review Not commissioned; externally peer reviewed.