“If you want to know the road ahead ask those coming back.”: Reflections on PPI input into the CareCoach Study and open call for carers with lived experience of dementia care to join the PPI team

Fenwick, Geoffrey, Scheibl, Fiona, Harrison Dening, Karen, Poland, Fiona ORCID: https://orcid.org/0000-0003-0003-6911, Rauf, Mohammed Akhlak, Eley, Ruth, Man, Mei-See ORCID: https://orcid.org/0000-0003-4948-5670 and Cross, Jane ORCID: https://orcid.org/0000-0002-7003-1916 (2022) “If you want to know the road ahead ask those coming back.”: Reflections on PPI input into the CareCoach Study and open call for carers with lived experience of dementia care to join the PPI team. Journal of Dementia Care. ISSN 1351-8372

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Abstract

Around 700,000 family carers support 900,000 people with dementia in the UK. These carers are at risk of becoming overwhelmed as their loved one’s dementia progresses, but interventions aimed at developing personal resilience can help carers to cope better. One intervention that has had a positive impact is an online “coach” which combines self-directed learning (videos and text) with remote input from a support worker. Key benefits include a reduced sense of burden and increased coping with the challenges of caring. Robust measures of the impact are limited due to methodological inconsistencies. The UK-based CareCoach Programme, funded by the National Institute for Health and Care Research (NIHR), is working in partnership with Join Dementia Research, tide (Together in Dementia Everyday), Dementia UK, and Alzheimer’s Society, to address this evidence gap by testing the online coach in a clinical trial. To ensure the intervention realises its full potential the CareCoach team invites applications for public and patient involvement members.

Item Type: Article
Additional Information: Acknowledgements: This programme is funded by the NIHR under its Programme Grants for Applied Research Programme (grant reference number NIHR201076). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
Faculty of Medicine and Health Sciences > Norwich Medical School
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging
Faculty of Medicine and Health Sciences > Research Centres > Institute for Volunteering Research
Faculty of Medicine and Health Sciences > Research Centres > Population Health
Related URLs:
Depositing User: LivePure Connector
Date Deposited: 23 Feb 2023 09:30
Last Modified: 06 May 2024 01:26
URI: https://ueaeprints.uea.ac.uk/id/eprint/91251
DOI:

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