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

Ryan, Sara ORCID: https://orcid.org/0000-0002-7406-1610, Wallace, Louise, Tilley, Elizabeth, Martin, Angela, Bebbington, Pam, Morrissey, Emmie, Tuffrey-Wijne, Irene and Mikulak, Magdalena ORCID: https://orcid.org/0000-0002-1519-7673 (2023) 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. Health and Social Care Delivery Research. ISSN 2755-0060 (In Press)

Accepted Version File not available for download. Download (7MB)

Abstract

Background People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives 1. Find out what is known about health needs and resources for older people with learning disabilities (aged 40 years plus) 2. Identify exemplars of good services for older people with learning disabilities 3. Explore service exemplars through ethnographic case studies 4. Evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools 5. Co-produce recommendations and resources Design and methods Work Package (WP) 1 Rapid scoping reviews: Three reviews focused on the health and social care needs for older people with learning disabilities and ‘BTCO’, family carers, and coordination of support for this group. WP2 scoping and mapping exemplars of good practice: Analysis of published service standards to assess excellence criteria, by mapping services, interviews (n=30), sur-vey (n=9) and informal discussion with commissioners. WP3 Ethnography of case studies of exemplar provision; independent supported living (n=4); residential/nursing home (n=2); day activities (n=1), Shared Lives (n=2). Field-work (20 days per model), interviews (n=77) with older people with learning disabilities, family carers, support staff and commissioners. WP4 Co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. WP5 Three stakeholder workshops co-produced service recommendations. Findings The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and ‘BTCO’. Criteria of excellence were produced and a shortlist of 15 services were identified for consideration in WP3. The ethnographic work found environmental, organisational and social factors were important, including supporting independence and choice over who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In WP4, we found families were worried about the future and unsupported to explore options. ‘Planning Ahead Cards’ and a booklet to record discussions were produced and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers forum, film, podcast and academic papers. Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older age support. Families are unsupported to plan leaving people without choice. ‘BTCO’ was found to be unhelpful terminology. Recommendations: A new strategy for older people with learning disabilities and family carers which encompasses commissioning practices, professional input and peer learning, proactive support to ageing well and excellent service design. Limitations The pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in WP3. Families’ plans and therefore change may be frustrated by insufficient service resources. Future work Given the lack of focus in this area there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die ‘in place’; best practice re designing/commissioning services including housing; the role of social workers access to nature; accessing main-stream support; and evaluation of the planning ahead cards.