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.

Work package 2: scoping and mapping exemplars of good practice in living arrangements in the community for older people with learning disabilities and ‘behaviour that challenges others’

Published service standards and grey literature of WP1 were analysed into themes supporting criteria to judge the excellence of services. Data from the mapping of services were subject to rapid analysis to refine the criteria, and further criteria were generated about participants’ relationships with services.

A mapping exercise aimed to identify if services met the criteria for excellence. Multiple routes were used to identify the commissioning and provision of exemplar services and to find out key information about services using interviews (n = 30), an online survey (n = 9), websites and other documentary sources, including a search of Care Quality Commission (CQC) reports.

Data generation produced descriptions of services and critiques of the criteria of excellence. Analysis involved coding and summarising information into a template including how the service met the criteria, the service model and who the services were provided to. The templates were presented to the research team and Advisory Groups for a final decision on the list of excellent services for WP3.

Work package 3: ethnography of exemplar community living models

Nine case studies of four models of provision: independent supported living (n = 4), residential nursing home (n = 2), living with family and using day activities (n = 1) and Shared Lives (n = 2). Shared Lives is a national scheme in which PWLD live as part of a family usually funded by the local authority (LA). Ethnographic fieldwork was conducted by academics and co-researchers with lived experience. Sites were dispersed across England.

Researchers spent approximately 20 days within each model of care. Interviews were conducted with 95 PWLD including people who would be described by services as having severe learning disabilities and/or complex needs, family carers, support workers and managers, and commissioners.

A thematic data analysis of observation notes, interview transcripts and policy documents was undertaken. Coding categories evolved iteratively. Mind maps and more conceptual analysis of meaning, action and process were used, capturing the micro-detail of participants’ lives. Co-researchers were involved in a section of analysis using audio and written extracts of data.

The opening of a second residential nursing site selected during proposal development was delayed. Modified ethnographic data collection methods, including documentary analysis of planning meetings, interviews with the service development project manager, lead commissioner, a LA councillor, the chairperson of a parent carer group, and the co-design process, were considered in interviews and by observation.

Work package 4: co-production and testing of resources for older people with learning disabilities and their families

Co-design methods explored what approaches are considered appropriate by PWLD and family carers, and a set of resources for PWLD and families was co-produced. The team included a research assistant with learning disabilities. Thirty-six people (9 PWLD, 11 parents, 16 siblings) took part in interviews and focus groups using communication aids Books Beyond Words and Talking Mats™. Data were analysed using a Framework approach. An experience-based co-design approach was used to produce a decision-making resource. Twelve online sessions were held with 11 participants, including a core group of 4 PWLD and 4 parents, to develop the resources. A small-scale evaluation tested these with eight families across a 2-month period. This focused on the usefulness of the resource, the impact of planning actions and feedback for improvement. Data were collected twice using a questionnaire.

Work package 5: methods

This WP aimed to co-produce recommendations for commissioners and providers, resources for carers and PWLD, and online training materials for social workers and support staff. Participants in two co-design workshops (n = 45 and n = 30) shared initial findings and discussed developing recommendations. A third workshop (n = 22) focused on the developing recommendations, and research priority setting in the north of England. Participants included a wide range of stakeholders: PWLD and family carers, NHS England, NHS, the CQC, LA delegates, disability charity organisations, service providers, commissioners and academics.

Work package 1

Rapid review 1 generated four themes: transition over time, including proactive planning for circumstances in which PWLD are no longer able to remain in their home; avoiding the need for inappropriate transitions; making transition work; and an absence of targeted resources to support this. There is limited planning by ageing family carers and PWLD, and a need for professional involvement in supporting the family before ageing-related problems become manifest. Commissioners have a responsibility to proactively plan for the delivery of appropriate housing and support, requiring robust databases of ageing family carers and older PWLD.

Rapid review 2 generated four themes: a lack of accessible advice, information and support for families to plan ahead; challenges facing family members with their own needs; the lack of availability of suitable housing and support; and lack of targeted resources to guide PWLD, family carers or professionals in planning ahead.

Rapid review 3 identified three layers to co-ordinating care for older PWLD. For individuals this is communicating effectively and co-ordinating care to pre-empt the effects of ageing, delivered by skilled staff. At service level this is co-ordination across teams and services including housing, drawing on those with expertise in learning disabilities. At local/regional level, this is commissioning services taking account of current and future age-related needs.

The reviews confirmed an inadequate evidence base concerning the experiences, needs and support of family carers of older PWLD, who are being supported when their family member’s preference is to remain at home and/or to achieve a potential move where appropriate and desired. WP1 also highlighted the conceptual limitations of the term ‘BTCO’.

Work package 2

The final criteria of excellence were:

• personalisation, with goals, daily plans and activities shared and updated
• matching staff to people being supported
• personalised living space and choice around who this is shared with
• proactive, preventative health care involving primary care, and involvement of NHS multidisciplinary learning disability teams
• staff recruitment underpinned with the right values and skills
• high staff retention to provide continuity of care
• inclusive communication methods
• family involvement
• community engagement and inclusion
• trauma-informed services where appropriate
• good practices such as end-of-life care planning, dementia assessment and management embedded as routine
• commissioner endorsement of provider quality and resilience
• commissioners working with providers, PWLD and families in building capacity for future services.

The mapping involved review of 330 potentially relevant locations, which was reduced to 74 after consideration of the relevance of the service to older PWLD. There was contact with around 260 people across England, which led to 89 contacts who provided information in formal interviews and informal discussions, via online meetings and by e-mail about at least one specific service, with around 3–6 provider and commissioner perspectives on the same services.

A shortlist of 15 services was agreed for consideration in WP3.

Work package 3

Findings were organised around environmental, organisational and social factors. Environmental factors supporting independence, and choice over who people interact with, were maximised for those living on their own or with people they chose to live with. Organisational factors related to systems that support good and consistent relationships with support staff, staff matching, aspirational support and adapting to changing needs as people age. Commissioners that actively plan for adapting care packages and contingency provision were seen to avoid crises. Planning for end-of-life care was not well supported by policies and practices except in the nursing home and one supported living provider. Shared Lives provision actively supported people who were developing dementia. Social factors included maintaining family and community relationships and being supported to do a range of activities. The label of ‘BTCO’ could be removed with consistently good support and environment.

Poor practices of institutionalisation were observed, where staff schedules over-rode choice and/or duration of activities. Small providers that had strong values and management engagement with support workers were more able to offer consistently good support than larger organisations where excellent support can exist alongside examples of poor support. Observation of planning for a new nursing home offered useful insights into the challenges involved in growing capacity for local services for PWLD as they age, while adhering to models of excellent care. The research showed the extent to which independence, choice in relationships, support for healthy ageing, and meaningful activity including work was evidenced in different ways across providers, with some failing to achieve this despite the rhetoric and aspirations of providers and commissioners.

Work package 4

Families were acutely aware of the need to plan ahead and were worried about the future, unaware of and unsupported to explore options. Co-design sessions stimulated ideas and discussion and the content and format of a decision-making resource was produced based on what worked for family carers and PWLD. This comprised a set of 102 ‘Planning Ahead’ cards and a ‘Me and my plans’ booklet in which families could record their discussions and plans. What participants wanted in their home reflected WP3 findings about the factors that enable excellence in care. They wanted to choose who they lived with; to be supported by people who know them well and care for them; to live in a location that suits their lives; and to have control over what they do and when. The lack of awareness of alternatives and absence of social work support was striking. In some cases, the lack of options led to parents ignoring the future, denying PWLD the opportunities to have lives that their peers without learning disabilities can have.

Work package 5

Formative discussion across three stakeholder workshops informed the development of recommendations about how to raise awareness and improve access to information about planning and options. The workshops involved a range of stakeholders, and short films were used to present developing project analysis and raise key questions. Discussion focused on improved needs assessment data including for those not known to services; improved peer learning by providers and commissioners, and funding of self-advocacy groups to support people’s local decision-making; and improved individual support by matching staff to people and enabling staff to celebrate their successes. To support dissemination, a session plan was created in standard and Easy Read versions to enable self-advocacy groups to contribute to the development of practical recommendations for providers and commissioners.