People with learning disabilities are generally living longer in the UK, but adults with learning disabilities face challenges in later life such as when a parent dies, new research shows.
The research found that the familial, friendship and social relationships many people with learning disabilities rely upon change as they grow older, and the loss of a parent or the onset of age-related medical conditions can significantly disrupt life for someone with learning disabilities.
Changes in these support networks can lead to an increased risk of isolation and loneliness, further mental or physical health problems, and in some cases use of acute and crisis services, highlighting a need for more support for adults with learning disabilities to age well.
The research was part of the Greater Manchester Growing Older with Learning Disabilities (GM GOLD) project, which was carried out by a team of 16 older people with learning disabilities.
The aim was to reduce social isolation amongst older adults (aged 50+) with learning disabilities and to find out what makes somewhere an age-friendly place to live for older adults with learning disabilities.
The team was supported by ‘research buddies’ from Manchester Metropolitan University and the partner organisations to conduct interviews and focus groups with 59 older people (aged 50-79 years) with learning disabilities from eight Greater Manchester areas (Bolton, Bury, Manchester, Oldham, Rochdale, Salford, Tameside, Wigan).
Research also highlighted the perception of older adults with learning disabilities also needs to be challenged to promote belonging and inclusivity, with many participants experiencing hate crime, bullying, name-calling and harassment.
Dr Melanie Chapman, Project Lead and Research Fellow at Manchester Metropolitan University, said: “Adults with learning disabilities face distinctive challenges that are more evident as we all live longer as a society. One of the pressing issues is that older people with learning disabilities need better support to deal with transitions that take place as they grow older, particularly when parents die.
“The research participants and members of our project team have shared their fears for the future as they grow older, and have described daily struggles such as inadequate support and experiences of discrimination and harassment. These first-hand accounts are vital to highlighting where intervention or provision needs to happen to prevent people being invisible within their local communities, lost in care systems, or needing acute services. They also show the resilience of older people with learning disabilities and the contributions that they make to society.
“People with learning disabilities are usually asked questions by people in positions of power, such as health and social care professionals, as part of assessments and treatments. We believe that being interviewed by other older people with learning disabilities will have helped participants to feel more comfortable and share their views and experiences more openly.
“We hope that health and social care providers and commissioners will act upon these findings to improve services and support. Many of the team are members of organisations that advocate for positive change in the lives of people with learning disabilities. We hope that they will also take these findings forward to create meaningful changes that make a real difference to people’s lives.”
Dr Daniel Docherty, an Expert by Experience and research buddy from partner organisation the SPICE group, said: “People with learning disabilities are marginalised from much of society throughout their lives. They aren’t included in groups and activities for older people or other members of the community. A lot of people don’t have families and rely on paid support, and if this support isn’t available, it has a big impact on daily life.
“This research has allowed older people with learning disabilities to put their knowledge and skills to use. We hope that our expertise will link into developing new strategies to include older people with learning disabilities. We have so much to offer.”
John Hannen, Programme Manager for Ambition for Ageing, said: ““Older people with learning disabilities are often excluded from Age Proud movements and largely because they have not been considered when activities are designed. It is vital that they are supported to recognise that their knowledge, skills and experiences are a worthy contribution.”
The full report is available on the Ambition for Ageing website: www.ambitionforageing.org.uk/GOLD