Improving support for older people with learning disabilities

The University of Oxford in partnership with The Open University (OU) have been awarded £900,000 by the National Institute for Health Research (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.

The need for carers to balance care and self-care

The role of OU Co-Principal Investigator, Professor Louise Wallace and her team is to lead on a part of the project that will undertake a review of what is known about services in the community for older people with learning disabilities and behaviours that challenge others and their older family carers. A second review is about family carers (parents and siblings for example), who themselves are ageing and have greater self-care needs; some have said that they dread the point at which they can no longer provide the direct caring role they have for so many years.

The team will undertake new research that addresses an important gap in what is known by identifying “what works” in health and social care, and housing services for people with learning disabilities and their family carers as they get older.

Looking at what works well

Professor 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.”

Professor Wallace is working with leaders in the NHS and social care services, those who provide services, the Care Quality Commission that regulates these services, the larger social care and residential care providers, care professionals and the public, to find examples of what works well, which they will look at in much more detail over a five month period.

Support through new learning materials

The team’s results will inform updates of the OU’s health and social care curriculum, and will be the basis for the following learning resources, hosted on the OU’s Open Learn platform:

• A free course for family carers on learning disability, ageing and behaviours that challenge others, with up to three hours of learning material, including interactive multi-media content, reflective exercises and key findings from the research.
• A free course for practitioners working alongside family carers and people with learning disabilities with behaviours that challenge others as they age. The material will include short videos, practice guidance, podcasts, and links to the publications from the research. This course will comprise approximately six hours of learning, focusing on the law, examples of best practice, working through complex cases and advocating for more person-centred outcomes within financial or commissioning constraints.

Academics and social care providers working together

The project is co-led by Associate Professor Sara Ryan, University of Oxford. The wider project team includes academic researchers from Kingston and St George’s University (London) and Manchester Metropolitan University, a family carer from the Oxfordse hire 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 new research 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.