Research: Growing older — planning ahead

Research summary

• September 2020 – February 2023

The project aims to help older people with learning disabilities and their family carers better plan for the future.

Two thirds of adults with learning disabilities live with their families. Little is known about how family carers plan for their own end of life. Many older carers worry about their children’s futures.

An upsetting change of circumstances, such as the loss of the family home or the onset of chronic health conditions, can lead to behaviours that challenge others in people with learning disabilities.

Such changes can then lead to an increased risk of crisis placements.

Objectives

We will make policy and practice recommendations and develop resources to help improve support for older people with disabilities, family carers and the people who work with them.

This will include advice and support for carers who are approaching the end of their life.

Methodology

We will:

• review what is known about older people with learning disabilities and behaviours that challenge others, and their family carers
• find out what support, resources and services exist
• identify examples of good practice in residential, supported living and family support services
• develop case studies about the commissioning and delivery of supported living services for older people with disabilities
• develop and evaluate resources for planning for the future, including end-of-life plans for the carers
• co-produce recommendations, resources and training materials

We aim to make workable recommendations that improve support. We will do this by listening to and involving:

• older people with learning disabilities
• their family carers
• self-advocacy groups
• social workers
• support workers
• the people who provide, pay for and assess services

Our project team includes two people with learning disabilities and a family carer.

An advisory group of family carers and people with learning disabilities will work with the research team throughout the study.

Expected outcomes and outputs

The main beneficiaries of this study will be older people with learning disabilities and their family carers.

Commissioners, service providers, professional carers and health and social care staff will also get useful new resources to help improve support.

We will produce:

• recommendations for service providers and commissioners
• resources for older people with learning disabilities, family carers and support workers
• two free courses for family carers and support workers, hosted on the Open University’s OpenLearn platform
• a continuing professional development (CPD) course for social workers, hosted by the British Association of Social Workers
• a support worker forum to share best practice, hosted by the Open University
• a film about the project findings and podcast about the research process on socialcaretalk.org
• articles for academics and members of the public

Research outputs

• Mikulak, M, Ryan, S, Bebbington, P, Bennett, S, Carter, J, Davidson, L, Liddell, K, Vaid, A and Albury, C (2021) “Ethno…graphy?!? I can’t even say it”: Co-designing training for ethnographic research for people with learning disabilities and carers. The British Journal of Learning Disabilities
• Ryan, S (2020) Planning ahead, older people with learning disabilities and a shake-up of ‘tired’ research practices, National Institute for Health Research
• Ryan, S (2021) Putting research right Community Living Magazine
• Wallace, L, Vaid, A and Ryan, S (2020) Planning ahead for older people with learning disabilities Care Management Matters