Title: Adapting and testing an intervention for carers of people with dementia-CARECOACH
Funder: Department of Health and Social Care

Abstract: 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&ndash; 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.

Lay abstract: Background Dementia is a condition where a person gradually loses one ability after another. Caring for someone with dementia can put enormous strain on the carer decreasing energy, resilience, physical and mental well-being and relationships. The carer s ability to stay emotionally and physically healthy is crucial for both the carer and the person with dementia, thus preparing for these changes is important. Face-to-face support together with online training for carers, the Partner in Balance (PiB) programme), was developed in the Netherlands. This tested positively and will hopefully benefit carers in the UK. What we will do We will adapt the PiB programme to provide tailored support for UK carers, combining face-to-face sessions supported by a dementia care coach and internet-based home activities. How we will do this We will work with carers and healthcare professionals, to agree on the PiBUK programme content, to make it work for people and help them use it. By co-producing film and other materials as required we can make sure the programme reflects UK real-life care situations. Adapting and testing will take place initially at 7 sites, with the next stage involving a trial at 26 sites, with half of the carers being offered PiBUK and half offered the best alternative. Assessments of carers sense of being able to care well, their general mood and quality of life will be noted at the beginning of the trial, then again at 6 and 12 months. Working with people with dementia and carers People with dementia, their families and a co-applicant on the research team helped to develop the PiBUK programme through focus groups and interviews. A survey of 400 carers from the organisation Together In Dementia Everyday (TIDE) was then carried out to find out how important the topic was to them, helping to further shape the study. Working together in this way enabled us to find ways to measure the potential effects of the PiB UK study in ways that carers, patients and public (PPI) consider to be relevant and important. We will continue to involve PPI throughout the study to oversee the research with continued support from TIDE and the Alzheimer's Society . How we will share findings Dementia UK , the Alzheimer s Society and TIDE will help us develop materials to support carers. These will be made freely available. We will share our findings in open-access academic and professional journals and conferences, including community events, public press, newsletters and social media channels. Policy workshops will be held for service commissioners and providers of health and social care services.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL