About

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

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 supported 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 is unable to continue to provide support. Many older carers worry about their children’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.

For more information, see the study website