TY - JOUR

T1 - Improving support and planning ahead for older people with learning disabilities and family carers

T2 - a mixed-methods study

AU - Ryan, Sara

AU - Wallace, Louise

AU - Tilley, Elizabeth

AU - Mikulak, Magdalena

AU - Anderson, Rebecca

AU - Vaid, Angeli

AU - Bebbington, Pam

AU - Bull, Richard Keagan

AU - Morrissey, Emmie

AU - Martin, Angela

PY - 2024/6/27

Y1 - 2024/6/27

N2 - AbstractBackgroundPeople 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); (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.Design and methodsWork 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.FindingsThe reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and ‘behaviours that challenge others’. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that 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, a film, a podcast and academic papers.ConclusionsThere 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.LimitationsThe 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.Future workGiven 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 regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the ‘Planning Ahead’ cards.

AB - AbstractBackgroundPeople 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); (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.Design and methodsWork 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.FindingsThe reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and ‘behaviours that challenge others’. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that 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, a film, a podcast and academic papers.ConclusionsThere 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.LimitationsThe 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.Future workGiven 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 regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the ‘Planning Ahead’ cards.

KW - learning disabilities

KW - Ageing

KW - SOCIAL CARE

U2 - 10.3310/MTHW2644

DO - 10.3310/MTHW2644

M3 - Journal article

VL - 12

JO - Health and Social Care Delivery Research

JF - Health and Social Care Delivery Research

SN - 2755-0060

IS - 16

ER -