The lives of older people with learning disabilities who live at home with parents or siblings have been largely overlooked in social care research, as have the experiences of older family carers.
This may, in part, be due to the increasing life expectancy of people with learning disabilities; research in this area might not have been undertaken because people with learning disabilities often weren’t living into old age.
While the age gap in life expectancy for people with learning disabilities is still too far behind the general population, many are living longer. Indeed, there is a predicted increase in the number of people with learning disabilities aged 60 and above of over a third since 2000. Chris Hatton, Professor of Learning Disabilities at Manchester Metropolitan University, estimates there are now around 81,000 people with learning disabilities aged 50 and over in England, many of whom are not in touch with services.
Addressing the issues
Our research is addressing the reluctance on the part of older parents to forward plan for their adult child’s move from the family home because of a concern about their wellbeing. This reluctance can lead to an increased risk of crisis placements, which can generate behaviours that challenge others in the person with learning disabilities.
A further related gap in research is end of life care planning of older carers. It is concerning that, despite policy initiatives, such as Valuing People, and a strong focus on enabling people to lead independent lives, parents of people with learning disabilities continue to care into their 80s or even 90s for their adult children. This suggests a clear lack of trust in existing provision. Carers Allowance also stops when people receive their state pensions, which means this additional labour, albeit through love, is unpaid. Policy and services appear to have done little to address this problem.
Our study was funded in response to a commissioned call from National Institute for Health Research around behaviours that challenge others, and the need for further research on services to support older carers. It involves a self-advocacy group, a charity run by and for carers and four universities. Our aim is to improve support for family and professional carers and older people with learning disabilities and behaviours that challenge others. We will be working closely with people with learning disabilities and family carers across the project.
A strong base
The idea for the study came from a Comic Relief-funded project called Embolden, which started in July 2016 and was led by Oxfordshire Family Support Network (OxFSN). Embolden was the legacy of a previous OxFSN project, Changing Scenes, which set up social support networks for a small group of 15-20 older family carers. Changing Scenes heard that older family carers in Oxfordshire were not aware of their rights and entitlements and were unable or unsure of how to ask for them. OxFSN increasingly suspected that the number of older carers of people with a learning disability in Oxfordshire were largely under-reported in research and unknown to social and health care services, and that numbers were increasing in line with the local age demographics.
Embolden aimed to support, advocate for and empower family carers aged 60 years and over who were caring for a family member with a learning disability. Over three years, 215 family carers brought Embolden to life by taking part in a series of events on key topics such as health, finance and housing. These events ranged from small group coffee mornings to a final and more formal conference, The Better Together Event.
The evaluation found that over 250 professionals benefitted from the project, which had also identified an additional 60 older carers in their 80s providing daily care for a family member in Oxfordshire. Findings about the increasing numbers of older carers informed the local public health needs assessment and the social care housing needs strategy in Oxfordshire.
The ability to create strong local networks like regular coffee mornings was limited by the frailty, immobility, and energy of older carers to stay involved. Older carers’ views of supported living were often based on institutional care settings of the past. Their fear of handing over the support to others was sometimes compounded by horror stories in the media – Winterborne View, Whorlton Hall and the LeDeR reports. This stopped older carers planning for when they were no longer able to care.
Issues of particular concern to older family carers appeared to include consent, decision making, transition planning and financial assessments. They often only sought support when in a crisis. Increasingly tight budgets in social care meant older carers were worried that speaking up would lose them the support they already received for their relative. Families with non-white British backgrounds felt even more concerned and were very reluctant to even engage with OxFSN as intermediaries.
Brenda, aged 92, was the oldest family carer who took part, still caring daily for her 66-year-old daughter. Like her counterparts, she did not choose the label ‘expert by experience’ or even ‘family carer’, rather considered it just something she did. And, like her counterparts, what worried her the most was what would happen when she died. She said, ‘The worry and stress is far worse than the 66 years of caring that I have done – I don’t sleep at night. I can’t as I am so worried that Karen will not be able to stay in her own home [and] the thought of Karen being uprooted from all the things she loves, to go where she doesn’t know anyone and where they do not understand her.’
Embolden was Oxfordshire-focused, but the experiences and findings are of national significance, raising questions about how older carers and older people with learning disabilities are supported to plan for their futures, together and alone. Our new research project stems directly from these findings.
What we need now
The Growing Older-Planning Ahead project is divided into different work packages. The second work package is being led by Professor Louise Wallace from The Open University and will focus on identifying exemplars of good practice in residential cares, supported living and family support services.
Much is known from inquiries about what does not work well in services for people in the community and residential care. We want to find what works well in community and residential services for older people with learning disabilities and behaviour that challenges others and their families. This will include preparing for transitioning to care that is given by other family members or supported living services.
We will focus on those aged 40 and over because:
- We know people with learning disabilities can become frail or lose cognitive capacity earlier than other people.
- Their family carers are likely to be in an older age group, facing their own concerns about their capacity to continue to provide support as they age.
In this part of the research, we are looking for services that work well in providing support and managing the move from the family home to other forms of living. We will use many sources in trying to understand what features of the service work, who they work well for, and why. By January 2021, we plan to have a wide sample of what works and use this to select the best three or four services to study in greater depth in 2021.
Our team of researchers are approaching the learning disability and end of life care policy leads in NHSE at a regional level. In clinical commissioning groups and local authorities, we are contacting commissioners. We are approaching professionals, such as learning disability nurses and social workers, through their professional networks and, via social media, asking families to nominate their own examples from experience using the hashtag, #OlderAhead.
We are particularly interested in hearing from providers of services who consider themselves to be exemplary. This could be day services that support people to stay at home, or services that support early assessment and management of dementia and frailty in people with learning disabilities. There could be great examples of supported living such as Shared Lives, or residential care and end of life care providers that suit this client group. We also want to hear about services that work with all stakeholders to think and plan ahead around transitions in care.
We are running a survey and speaking to people to gather this data. Care providers in England should get in touch before the end of December 2020 via email.
The programme presents independent research funded by the NIHR under its Health Services and Delivery Research funding scheme (129491). The views expressed in this feature are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
Professor Louise Wallace is Professor of Psychology and Health at The Open University. Email: email@example.com
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National Institute for Health and Care Excellence. Learning disabilities and behaviour that challenges: service design and delivery. NG93, 2018.
National Institute for Health and Care Excellence. Supporting Adult Carers. NG150, 2020.
Oxfordshire Family Support Network. Oxfordshire Family Support Network, 2018