“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

Geoffrey Fenwick, Fiona Scheibl, Karen Harrison Dening, Fiona Poland, Mohammed Akhlak Rauf, Ruth Eley, Mei-See Man, Jane Cross

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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.
Original languageEnglish
JournalJournal of Dementia Care
Publication statusPublished - 30 Jul 2022

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