Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study

Ryan S, Wallace L, Tilley E, Tuffrey-Wijne I, Mikulak M, Anderson R, Vaid A, Bebbington P, Keagan-Bull R, Morrissey E, Martin A
Record ID 32018012852
Authors' objectives: 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. (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (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 and (5) co-produce recommendations and resources. While a significant age gap remains in mortality between people with learning disabilities (PWLD) and the general population, more PWLD are growing older. Research shows that parents of PWLD are dissatisfied with social care services and concerned about the future of their adult child. Various policies aim to enable PWLD to live independently with support; however, family carers often maintain long-term care. This can generate a crisis for the PWLD, who may be moved to an alternative home that may not be appropriate for them. Our research focuses on PWLD aged ≥ 40 years in line with evidence that people may experience early onset of long-term conditions such as neurological, cardiovascular, respiratory and gastrointestinal disorders. Develop an understanding of what is known about the health needs, service interventions and resources for older PWLD, with a focus on those labelled with ‘BTCO’, and family carers [work package 1 (WP1)]. Identify exemplars of good practice in services in the UK for older PWLD, and their family and professional carers towards the end of life (WP2). Explore service exemplars through ethnographic case studies (WP3). Evaluate support for older PWLD and their families through the co-production and testing of decision aid tools to support future planning (WP4). Co-produce recommendations with PWLD, carers, providers, social workers and commissioners, and resources for older PWLD, family and support workers and social workers (WP5).
Authors' results and 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. ‘Behaviours that challenge others’ was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. There is little research on older PWLD and family carers. Some participants were leading good lives in their own homes with excellent support from staff who knew them well. Even largely excellent services vary in their proactive approach to planning for older age support and end-of-life care. Families are often unsupported to plan ahead, and PWLD are by default left without choices about their future lives. The label ‘BCTO’ was found to be an unhelpful term that did not stimulate discussion of personalised care and rights to autonomy. It had little practical utility in the ethnographic research and was absent in the reviews.
Authors' methods: Work package 1 rapid scoping reviews – three reviews focused on the health and social care needs of older people with learning disabilities and ‘behaviours that challenge others’, and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice – analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 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). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 – 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. Work package 5 – three stakeholder workshops co-produced service recommendations. The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families’ plans, and therefore change, may be frustrated by insufficient service resources. Work package 1: systematic scoping reviews Three rapid scoping reviews (RRs) focused on the health and social care needs of older PWLD and ‘BTCO’ (RR1), the health and social care needs of family carers of older PWLD and ‘BTCO’ (RR2), and how care can be best co-ordinated for older PWLD and ‘BTCO’ (RR3). Literature including research articles, reports, policy and practice guidance was included. RR1 and RR2 included UK-related evidence from 2001, and RR3 had no date restriction and was international in scope. Older PWLD were defined as those aged ≥ 40 years. ‘Family carers’ included parents and siblings. Care contexts encompassed any community living. We focused our search strategy on ‘challenging behaviour’, ‘ageing’ and ‘learning disability’. Data were extracted into a form and considered alongside non-research information and guidance relevant to older PWLD and ‘BTCO’, and their family carers. A narrative approach was combined with insights from the research team and Project Advisory Groups. A three-stage inductive process was applied: development of a coding framework; development of descriptive themes and subthemes; and development of analytical themes and subthemes. Database searches yielded 261 returns, and a subsequent extended search for RR1 yielded 355 returns; 9 papers were included. RR2 searches yielded 157 returns; 7 items were included. RR3 searches yielded 1449 returns, with 9 included. While a systematic approach was taken to reviews and mapping services, it is possible that some evidence was missed in WP1 and WP2. The COVID-19 pandemic created challenges for participant recruitment, and workarounds were needed. One ‘excellent’ site withdrew early in WP3 due to staffing issues caused by the pandemic. Reliance on providers for recruitment in WP3 resulted in a sample limited to White British participants. Participation may have influenced providers to present excellence and hide less good practice, but, given the mix of provision observed, this was a low risk. The discussion cards produced in WP4 may be in formats and have content that exclude some people. This needs to be tested further. Attempts to plan by families may be frustrated by insufficient resources and options to achieve what people want, raising expectations that cannot be met.
Project Status: Completed
Year Published: 2024
URL for additional information: English
English language abstract: An English language summary is available
Publication Type: Full HTA
Country: England, United Kingdom
MeSH Terms
  • Learning Disabilities
  • Adult
  • Caregivers
  • Family Support
  • Family
  • Social Support
  • Aged
  • Middle Aged
  • Delivery of Health Care
Organisation Name: NIHR Health Services and Delivery Research programme
Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK
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