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.
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 Growing Older - Planning Ahead website describes independent research funded by the National Institute for Health Research (NIHR) under its Health Services and Delivery Research Programme (NIHR129491). The views expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.