Adapting and testing an intervention for carers of people with dementia-CARECOACH

Research Question: Can we adapt a dutch blended care intervention, for carers of people with dementia, for the UK context, is it implementable and what is its clinical and cost-effectiveness compared to usual care? Background: Around 700,000 family carers support 850,000 people in the UK with dementia. As dementia progresses individuals have greater psychological, social and physical care needs that are stressful for family carers cope with. Particularly when balancing competing demands from work, family and finances. Family carers provide significant support for people with dementia with very limited support for them. Research suggests intervening early helps carers to prepare and increases personal resilience. Partner in Balance (PiB), an intervention in The Netherlands, to support carers with a blended care approach combining online resources with a health professional coach has shown reduced carer stress and burden in a recent feasibility trial. Aims: We will build adapt the PiB intervention for the UK-setting (PiBUK), using co-production, test implementation in the UK, and undertake a single blind randomised controlled trial to assess the effectiveness and cost effectiveness of PiBUK. Objectives: Actively involve carers and clinicians/service providers to co-produce PiBUK focusing on acceptability and usability in the UK cultural context. Use co-production to inform implementation strategies and integrate PiBUK into existing health and social care pathways. To understand the dynamics of professional and caregiver experiences of PiB, their effects on trial outcomes, and potential effects on implementation in real-world service settings. Undertake a feasibility trial testing implementation outcome measures deliverability and carer uptake of PiBUK. Undertake a randomised controlled trial to test the effectiveness of PiBUK in reducing carer stress and burden. To disseminate findings widely, optimise access and encourage implementation. Methods: Four work packages (WP); WP1 uses co-production methods adapting the intervention for the UK context, WP2 examines implementation potential informed by Normalisation Process Theory in both health and social care systems and the personal environment across WP 3&4. WP3 2-arm feasibility trial, in seven sites, recruiting 45 participants (25 intervention 20 control) over 6 months who will use the PiBUK intervention or receive treatment as usual. We will test recruitment, retention and outcomes (carers; perceived stress, burden, mood, quality of life, person with dementias quality of life). WP4 2-arm randomised controlled trial of clinical and cost effectivness, in 26 sites, recruiting 624 participants (312 per group) over 12 months. This will be informed by WP3. Timelines for delivery: The programme is over 66 months, co-design and refinement take place in year 1, the implementation study months 12-57, RCT s months 8– 60. Dissemination activities take place throughout as work-packages report with final trial results and final report months 60-66. Anticipated impact and dissemination: There is potential for widespread impact due to poor information and support dedicated for carers. alongside limited awareness of the potential impact of blended care combining online training and face-to-face support for family carers. We will take a pro-active approach to dissemination, engaging with academic, policy, professional/practitioner and lay audiences.