This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
Researchers observed the support provided for people with learning disabilities aged 40 years and older at 9 home or day services in England. All were identified as good by commissioners. Most of the services:
- supported people’s’ independence, allowed them to choose who they lived with, helped them to be active and to fulfil their aspirations
- paired people with the staff they related to best, to build strong relationships.
However, few adapted their approach for people as they aged, or planned for end-of-life care. Poor practice (service users watching TV all day, for example) occurred at some of these services. The researchers call for a new strategy to support adults with learning disabilities as they age and made suggestions about how to achieve this.
More information on learning disabilities is available on the NHS website.
What support do older adults with learning disabilities need?
Approximately 81,000 people older than 50 years are living with learning disabilities in England. Most live at home with family carers and many are not in contact with services. There is a lack of research on how to support older adults with learning disabilities.
Carers report dissatisfaction with services. For example, adults with learning disabilities often lead inactive, solitary lives, and supported accommodation is in short supply. Carers are often concerned about the support available for their loved one after their own death or as they become older. People with learning disabilities are living longer, so the need to plan future care is growing.
Researchers described examples of high-quality care and support for adults with learning disabilities.
What’s new?
The research team observed practice in different homes or day centres in England, which were likely to provide the best care. The study included:
- 4 supported living units (independent flats, with or without shared living spaces, and carer support)
- 2 nursing care home
- 1 day activity centre
- 2 Shared Lives partnerships in which service users live with another family at home (funded by local authorities).
Researchers spent 20 days in each setting. Overall, they interviewed 95 people including service users, family carers, support staff and commissioners.
What is good practice?
Accommodation
In the best services, people had a secure, permanent and personal home with access to transport links, and green spaces. They:
- lived on their own or chose who they lived with
- maintained relationships with family and community, and had a sense of belonging
- were encouraged to be independent and active, and to fulfil their aspirations; one young person lived in his own house, round the corner to his mother, and kept a cat.
Staffing
Being paired with staff they liked (and who liked them) created strong, consistent relationships, and made people feel comfortable. This was particularly important for people who did not communicate with words, as staff could understand their gestures and expressions. Some staff worked for the same provider for decades. When staff support was good, so-called behaviours that challenge others were reduced.
Management
People were best supported by:
- smaller providers compared with larger organisations; one small provider was responsible for 20-25 people
- commissioners who spoke with service providers to understand the quality of care in their facility, and upheld strong values, such as considering that everyone has the right to choose where they live, and that everyone is equal.
Shared Lives partnerships were particularly effective; people felt like valued family members. They could stay long-term, often for decades, and could more easily be active and have comforts (gardening, working or owning a pet, for example) than in other facilities.
Areas for improvement
Some people had little choice about where they lived, who they lived with, who supported them, and how they spent their time. For example, some were put to bed early or spent all day watching TV. This made them feel as though they were living in an institution rather than at home.
Most services did not adapt as people grew older. For example, even in good homes or day centres, few providers (2 of the 9) had guidelines for arranging end-of-life care and staff lacked experience in this area.
In further interviews, many people and their carers were unaware of their alternatives and were not supported by social workers. The lack of options could lead to parents ignoring the future and denying opportunities enjoyed by older people without learning disabilities.
Why is this important?
The best homes or day centres for adults with learning disabilities helped them to live on their own terms, and grow and expand their relationships, interests, and aspirations. But there was a lack of support for people as they aged, for example, in end-of-life planning, and support with mobility, nutrition and appropriate exercise.
Strong relationships between service users and staff were essential for good care. But staff shortages and using agency staff to plug gaps can make it difficult to provide adequate support, the researchers say. Levels of support varied between facilities and could depend on staff schedules rather than being person-centred. Staff may need more training to support adults with learning disabilities as their physical, mental, and social needs change.
What’s next?
The researchers call for a new strategy to support adults with learning disabilities and their families as they age. Working together with this group of people and service providers, they developed suggestions for improvement, which include:
- continuous learning by providers and commissioners through sharing best practice, funding advocacy groups to support decision-making by local people, and proactively listening to people and their families
- an individual approach including ‘try before you buy’ schemes so people can choose the support that is right for them; retiring the label of ‘challenging behaviour’; matching staff to people with compatible values; and recruiting staff who are kind, encouraging and knowledgeable
- a focus on healthy ageing including regular checks with a GP, healthy nutrition, exercise and proactive end-of-life planning.
Based on their findings, the researchers developed a training module for social workers and family members. They have also developed a set of cards with pictures and questions to help people and their carers plan their future care.
You may be interested to read
This is a summary of: Ryan S, and others. Improving support and planning ahead for older people with learning disabilities and family carers; a mixed methods study. Health and Social Care Delivery Research 2024; 12: 1 – 194.
An easy-read version of this summary.
A film about one of the study participants and the care he receives.
An article about the research from the Byline Times.
A training module for social workers on caring for adults with learning difficulties.
Information on taking part in NIHR research on learning disabilities.
Funding: This study was funded by the NIHR Health and Social Care Delivery Research programme.
Conflicts of Interest: No relevant conflicts of interest.
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