The Open University and The University of Oxford have been awarded £900,000 by the National Institute for Health (NIHR) to investigate how to improve support for older people with learning disabilities and their family carers. The project is funded through a specific call issued by the NIHR Health Services and Delivery Research (HS&DR) programme for studies of community health and care services.
Of 900,000 adults with learning disabilities in England, two thirds live with family and one fifth exhibit ‘challenging behaviours’. These behaviours are often generated by a change in family or external circumstances, such as when an older family carer becomes unwell and unable to continue to provide home support. Little is known about how family carers plan for their own end of life and how this may be impacted by having lifelong caring responsibilities.
The proposal for this newly funded work emerged from a project called Embolden, which involved Sara Ryan, Principal Investigator from Oxford and Angeli Vaid, Oxfordshire Family Support representative. This earlier study focused on the experiences of older carers and a key theme was concern about the future. A father, aged 72, said: ‘What keeps you awake at night is not knowing what the future holds for our son’. A mother, aged 92, said: ‘I just dread that day. What is going to happen? If they decide to uproot her I don’t think she’ll survive’. There has been little research addressing how services can best support older people with learning disabilities (aged 40+) in later life.
Co-Principal Investigator from The Open University, Professor Louise Wallace said: “We aim to find out what works best when health and social care services support people to live at home, in supported living or residential care, to ensure that they can make the decisions that best suits them. We also aim to produce new learning materials for families and professionals so they can be prepared for these challenges.”
The wider project team includes academic researchers from Kingston and St. George’s University (London) and Manchester Metropolitan University, a family carer from the Oxfordshire Family Support Network and the self-advocacy charity My Life My Choice. It will include advisers from a major supported living provider (Future Directions) and the professional body for social workers, the British Association of Social Workers. Over 30 months, this team will conduct research using methods including reviews of existing research and will gather information from families, health and care professionals to develop and evaluate new ways to help people make decisions about forward planning and end of life care.