Title: Improving the support for older people with learning disabilities and behaviours that challenge others, family and professional carers, and end of life care planning for carers
Funder: Department of Health and Social Care

Abstract: Of around 900,000 adults with learning disabilities in England, two thirds live with family and one fifth are estimated to engage in behaviours that challenge others. These behaviours often occur when someone is upset by change. Clear factors can cause distress for older people with learning disabilities. These include family carers growing frailer, the early development of chronic conditions including dementia, and a lack of planning in advance to avoid crises happening around where people are living. Little is known about how family carers plan for their own end of life. A recent project, Embolden, focused on the experiences of older carers. A key theme was concern about the future. https://www.youtube.com/watch?v=AMvbrhA2nUk. One dad, 72, said ‘What keeps you awake at night is not knowing what the future holds for our son’. A mum, 92, said ‘I just dread that day. What is going to happen? If they decide to uproot her I don’t think she’ll survive’. There has been little focus on how services can best support people with learning disabilities and behaviours that challenge others in later life._x000D_ _x000D_ Our study aims to improve support in this area by producing effective recommendations and resources for future planning for older people with learning disabilities with behaviours that challenge others, and end of life care planning for carers._x000D_ We will:_x000D_ _x000D_ 1. review what is known about older people with learning disabilities with behaviours that challenge others and family carers;_x000D_ 2. find out what support, resources and services exist for older people with learning disabilities with behaviours that challenge others and family carers and identify examples where good support is provided;_x000D_ 3. explore how these two groups can be better supported by spending time in places where older people are supported well in England. Our research team will include people with learning disabilities and family carers; _x000D_ 4. interview older family carers and people with learning disabilities about planning for the future and the end of life care plans for the carers, develop resources and see if they are effective in helping people to make decisions about this;_x000D_ 5. work with a range of people including older people with learning disabilities, family carers, self-advocacy groups, social workers, support workers, and people who provide, pay for and make sure services are good to produce workable recommendations to improve support for older people with learning disabilities and family carers. _x000D_ _x000D_ We will produce: recommendations for service providers and commissioners; resources and information for older people with learning disabilities, family carers and support workers; two free courses for family carers and support workers hosted on the Open University OpenLearn platform; a continuing professional development course for social workers hosted by the British Association of Social Workers; a support worker forum to share best practice hosted by the Open University; a film about the project findings and podcast about the research process on Socialcaretalk.org (sister site to Healthtalk.org); articles aimed academic audiences and members of the public._x000D_ _x000D_ We have a good plan to make sure our project findings reach the people they are aimed at. These include people with learning disabilities, family carers, self advocacy and carer groups, social workers, support workers, service providers, commissioners and the wider public. The project team includes two people with learning disabilities and a family carer and people with learning disabilities and carers will be involved in doing the research. The proposal emerged from the Embolden project which involved 2 co-applicants (Ryan and Vaid). An Advisory Group of family carers and people with learning disabilities, led by Vaid, will work with the research team across the duration of the project.

Lay abstract: An increase in the life expectancy of people with learning disabilities (PWLD), real reductions in the availability of services, and a reluctance on the part of their consequently older parent carers to forward plan for their daughter or son’s transition to independent supported living or care by other family members can lead to an increased risk of crisis placements. This is particularly so for people whose behaviour is seen to be challenging to themselves or others. Destabilising factors for this group include family carers themselves growing older, and for the PWLD the early onset of chronic health conditions including dementia and the potential loss of the family home. Many older carers worry about their daughter and son’s futures and little is known about how carers plan for their own end of life care (EOLC). Policy and services have done little to address this hidden problem._x000D_ Aim: To improve support for family (and professional) carers and older PWLD with behaviours that challenge others by producing effective and workable recommendations and resources including end of life care planning for carers._x000D_ Research questions: _x000D_ 1. What are the information, health and social care support needs of family carers and older PWLD (age 40 plus) with behaviours that challenge others, that enable effective forward planning around supported living and end of life care for older carers?_x000D_ 2. What are the characteristics of exemplars of good practice in services and support interventions in the UK for older PWLD (and their carers) with behaviours that challenge others towards end of life and how are they delivered?_x000D_ Methods_x000D_ • Three rapid reviews focusing on older PWLD with behaviours that challenge others and older carers for this group to inform the subsequent work packages. (WP1 Months 1-5, ) _x000D_ • A scoping exercise involving interviews, documentary analysis with key NHS and Local authority commissioners and providers, specialist third sector providers in England, and via social media to the wider learning disability community, to identify exemplar services for older PWLD and behaviours that challenge others (WP2 Months 1-5, 18-19). _x000D_ • A 9 site ethnography of service exemplars involving observations, interviews and documentary analysis (WP3 Months 5-25). _x000D_ • Focus groups and interviews with older carers around EOLC planning, develop and test decision aid interventions using experience based co-design methods (WP4 Months 3-25). _x000D_ • Co-produce implementable recommendations for service improvement and innovative dissemination plans for the uptake of the project outputs. (WP5 Months 25-30).These will include decision aid tools and resources for family carers, older PWLD, a free course for family carers, training materials and a forum for professional carers, a film published on Socialcaretalk, podcast, peer reviewed journals, conference presentations and non academic publications. _x000D_ _x000D_ Anticipated impact_x000D_ The main beneficiaries will be older family carers and PWLD; outputs will promote forward planning by carers and PWLD and behaviours that challenge. Commissioners and providers will be able to learn from our exemplar case studies to inform commissioning. Professional carers and frontline staff will benefit from the development of engaging and innovative resources covering issues around ageing, EOLC, forward planning and behaviours that challenge others. We will demonstrate to academics and commissioners through video blogs and social media how carers and PWLD can be fully involved in research projects.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.2 END OF LIFE CARE
Health categories: MENTAL HEALTH