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Improving the support for older people with learning disabilities and behaviours that challenge family and professional carers, and supporting end of life care planning for carers.

Introduction and background 

An increase in the life expectancy of people with learning disabilities and real reductions in the availability of services, can lead to an increased risk of crisis placements. Another contributing factor is a reluctance on the part of their consequently older parent carers to forward plan in preparation for their older adult son or daughter's move to independent supporting living or an alternative home. 

Of 900,000 adults with learning disabilities in England, two thirds live with family and one fifth exhibit ‘behaviours that challenge’. These behaviours are often generated by a change in family or external circumstances, such as when an older carer becomes unwell and unable to continue to provide support. Many older carers worry about their daughter and son’s futures and little is known about how carers plan for their own end of life care in the context of many years as a family carer, and policy and services have done little to address this hidden problem.

Our study aims to improve support for family (and professional) carers and older people with learning disabilities with behaviours that challenge others by producing effective and workable recommendations and resources including end of life care planning for carers.

Work packages

Work package 1 will review literature about the health (physical, mental and social) needs, service interventions and resources for (a) older people with learning disabilities and (b) family carers, with a focus on those with behaviours that challenge in transition to greater supported care.

 

Work package 2 will identify exemplars of good practice in residential, supported living and family support services and support interventions in England for older people with learning disabilities (and their family carers) with behaviours that challenge others.

 

Work package 3 will explore how people with learning disabilities with behaviours that challenge others and their family carers can be better supported in later life by researching the commissioning and delivery of innovative supported living services using ethnographic case studies.

 

Work package 4 will co-produce decision aid tools to support future planning and end of life care discussions for carers, and evaluate their initial use.

 

Work package 5 will co-produce actionable recommendations for commissioners and providers, resources and decision-aids for family carers and people with learning disabilities with behaviours that challenge others, and free online training materials about caring in later life for the public and for professionals.

Expected outcome

The main beneficiaries of this work will be older family carers and people with learning disabilities, and outputs will promote forward planning. Commissioners and providers will be able to learn from our exemplar case studies to inform commissioning. Professional carers and health and social care staff will benefit from the development of engaging and innovative resources covering issues around ageing, end of life care, forward planning and behaviours that challenge.

The team

Our team comprises researchers with a wealth of experience of qualitative research with a focus on people with learning disabilities and their carers, health services research, health inequalities, intervention evaluation, inclusive research methods, resource development, social work practice, carers and self-advocates.

Our team