ReCOgNising and SupportIng Distance dEmentia caRe (CONSIDER)

Background Most people living with dementia want to continue living at home and need high levels of support to do so. Distance family carers (living 1 or more hours from the person they support) provide considerable support, often alongside homecare workers however, they are largely ignored in research, policy, and practice. They face unique distance-related challenges and often do not receive support. The Care Act 2014 places a duty on local authorities to support family carers. Enabling people living with dementia and their families to maintain relationships and communication with one another is an important aspect of support. However, it is unclear if or how this is being done for people living with dementia and family carers with distance care relationships. Aims This research aims to understand and provide recommendations to develop policy and practices around distance dementia care in England. This will include how homecare workers can better support those with distance care relationships. Methods This is an 18-month project with three work packages (WPs): WP1 is a situational analysis to explore the current state of distance care in England. We will conduct a desk review of relevant literature, policies, legislation, and guidance around distance care; and review local authority and carer centre websites to explore what support is available and any local variation. WP2 involves qualitative interviews with up to 40 people with experience of distance care, including people living with dementia, distance carers, and homecare staff. Interviews will explore what works and what needs improvement to better support distance care arrangements for people living with dementia receiving homecare. Interview topic guides will be informed by WP1 findings. We will use photovoice to facilitate discussions; this involves asking people to take or find images to represent their experience of, in this case, distance care. WP3 will involve two online co-production consultations with 12 people including distance carers, homecare staff, and other professionals. Using findings from WP1&2, we will work together to agree and co-produce: 1) a list of top priorities for research and policy about distance dementia care to be shared with the policy team at Dementia UK (our study partner) 2) tips and advice for distance carers to be published on Dementia UK s website 3) good practice guidance for homecare workers supporting people living with dementia with distance care arrangements Anticipated impact and dissemination As well as the three outputs outlined above, we will produce: a lay-summary of the project findings for a publication for health and social care professionals; a scientific article for each of the work packages to be published in peer reviewed journals; and at least two conference presentations. We will hold an end-of-study event for people living with dementia, family carers, and health and social care professionals. Here we will share the tips for family carers, guidance for homecare workers, and showcase experiences of distance care by exhibiting the images from WP2 participants. We will share all outputs publicly as soon as they are available, and widely within our networks.