brainscanThere is a need to improve policy, planning and research in relation to people with learning disabilities and dementia, a new report has said.

While people with learning disabilities are five times more likely than the general population to develop dementia – and this population is increasing as people with learning disabilities are living longer – the most appropriate health and social care services are not always available at a time when people need them most

In response, a partnership of voluntary sector organisations – comprising the Voluntary Organisations Disability Group (VODG), Alzheimer’s Society, Foundation for People with Learning Disabilities, MacIntyre and the National Care Forum (NCF) – has launched a new report calling for the needs of people with learning disabilities and dementia to be better addressed. 

The report focuses on how best to support the growing numbers of people with the condition. The publication is based on recent work with care providers aiming to improve the quality of life of people with a learning disability and dementia, and the challenges to this goal.

Jeremy Hughes CBE, chief executive of the Alzheimer’s Society, said: “We know that a timely diagnosis is essential for anyone who has dementia. For people with a learning disability, who are at higher risk of developing dementia at a much younger age, there is an even greater need and services have a responsibility to develop their knowledge and awareness of dementia to ensure they can recognise it, diagnose it and put in place the support and services that people with learning disabilities and their families have a right to expect in order to help them live well.”

Dr Rhidian Hughes, chief executive of the VODG, added: “VODG members are taking practical steps to develop an evidence-based approach to developing and delivering high quality care and support services that are tailored to the needs of people with learning disabilities and dementia. The challenge is to enable people with learning disabilities and dementia to continue to be supported in the ways in which they decide. And, as people’s condition progresses, there must be good access to specialist services.”

Vic Rayner, executive director of the NCF, said: “It is critical that we broaden our understanding of how dementia affects people with learning disabilities, and this report provides valuable insight into the importance of existing and future research in this area. In addition, it provides a vital contribution to helping understand how delivery can be developed to offer more appropriate and effective support.”

Christine Burke, programme lead at the Foundation for People with Learning Disabilities, welcomed the report, saying: “This [report] is key to ensuring that those there to support them receive the right training and are able to plan for the future. Person-centred planning is crucial in supporting people to make their life preferences known and this to be the guiding principle for health and social care in putting the appropriate support in place.”