Better support needed for older adults with learning disabilities, guidance says

Calls for a new strategy to support adults with learning disabilities as they age have been highlighted by a government health funder, following a university study showing poor practice at services in England.

The National Institute for Health and Care Research has published evidence from Manchester Met showing that better support is needed to increase the independence of older people with learning disabilities, allow them to choose who they live with, and help them to be active and fulfil their aspirations.

Social care researchers observed support provided for people with learning disabilities aged 40 plus at nine home or day services in England, all of which were identified as ‘good’ by commissioners. They spent 20 days in each setting, interviewing 95 people including service users, family carers, support staff and commissioners.

They found that few services adapted their approach for people as they aged, or planned for end-of-life care. Poor practice was identified at some of the settings, such as service users being left to watch television all day.

The report authors are calling for a new strategy to support adults with learning disabilities as they get older, including sharing best practice among providers and commissioners, ‘try before you buy’ schemes to enable service users to choose the right support, and a focus on healthy aging including regular GP checks and better nutrition and exercise.

Sara Ryan, Professor of Social Care at Manchester Met and author of the study, said: “We knew there was a gap in our knowledge about older people with learning disabilities. We did not anticipate the extent to which this group (and their family carers) are systematically denied the opportunity to age meaningfully.

“This needs urgent attention and action, particularly given the longevity of people with learning disabilities is increasing.”

Based on their findings, the researchers have 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.

Approximately 81,000 people aged 50 plus are living with learning disabilities in England. Most live at home with family carers, and many are not in contact with services. There has historically been a lack of research on how to support older adults with learning disabilities, however Manchester Met’s work is shedding new light on these issues.

Its 2022 evaluation into residential care and supported living showed that adults with learning disabilities should be given more housing choices, while a study of people’s experiences following the COVID-19 pandemic revealed that half of adults with learning disabilities remained worried to leave the house, despite the end of lockdowns.

Last year, its national research project for the NHS Race and Health Observatory uncovered poorer care and lower life expectancy for ethnic minorities with a learning disability.