Growing Older, Planning Ahead

This NIHR funded project explored the experiences of older people with learning disabilities and family carers. The project was led by Prof Sara Ryan and Prof Louise Wallace (Open University) with Kingston University, My Life My Choice, Oxfordshire Family Support Network, British Association of Social Workers and Oxford University as collaborators.

We found there is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. ‘Behaviours that challenge others’ was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. 

The project report, Plain English Summary and Easy Read summary can be downloaded here.

Other project outputs include:

Resources for families and professionals

Planning ahead cards for people with learning disabilities, family carers and support workers.

Open Learn free course. Caring for an older family member with learning disabilities.

Open Learn free course. Supporting older people with learning disabilities and their families.

Lay/media publications

BBC Radio 4 Thinking Allowed. 2025. Learning Disabilities.

BBC Access all Areas. 2024. The 40 year olds who are in bed by 5pm.

Wallace, L, Vaid A, Ryan S. Planning Ahead for Older People. Care Management Matters.

Ryan S. (2024) Living Long, Living Well. Community Living.

Salman, S (2023) ‘A Fundamental Lack of Awareness that these People are Actually Human’: How the Government is Failing Older People with Learning Disabilities. The Byline Times.

Ryan S. Planning ahead, older people with learning disabilities and a shake up of ‘tired’ research practices. Enrich Blogpost, NIHR.

Ryan S . (2022). Putting Research Right. Community Living.

Academic papers:

Ryan, S., Mikulak, M. and Hatton, C., 2023. Whose uncertainty? Learning disability research in a time of COVID-19. International Journal of Social Research Methodology, pp.1-13.  

Mikulak, M., Ryan, S., Russell, S., Caton, S., Keagan‐Bull, R., Spalding, R., Ribenfors, F. and Hatton, C., 2022. ‘Internet is easy if you know how to use it’: Doing online research with people with learning disabilities during the COVID‐19 pandemic. British Journal of Learning Disabilities.  

Tilley, E., Jordan, J., Larkin, M., Vseteckova, J., Ryan, S. and Wallace, L., 2023. Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review. Journal of Applied Research in Intellectual Disabilities, 36(2), pp.207-229. 

Vseteckova, J., Jordan, J., Tilley, E., Larkin, M., Ryan, S. and Wallace, L.M., 2022. Transitions for older people with learning disabilities and behaviours that challenge others, and their family carers: a merged protocol for two rapid scoping reviews of evidence. Systematic Reviews, 11(1), p.14.  

Anderson, R.J., Keagan‐Bull, R., Giles, J. and Tuffrey‐Wijne, I., 2022. “My name on the door by the Professor’s name”: The process of recruiting a researcher with a learning disability at a UK university. British Journal of Learning Disabilities. 

Mikulak, M., Ryan, S., Bebbington, P., Bennett, S., Carter, J., Davidson, L., Liddell, K., Vaid, A. and Albury, C., 2022. ‘’Ethno… graphy?!? I can’t even say it”: Co‐designing training for ethnographic research for people with learning disabilities and carers. British Journal of Learning Disabilities, 50(1), pp.52-60.