New report sets out why dementia and learning disabilities needs better representation in policy, practice and research
People with learning disabilities are five times more likely than those in the general population to develop dementia*. Today a partnership of voluntary sector organisations launch a new report calling for the needs of people with learning disabilities and dementia to be better addressed.
Dementia has never had such a high profile. The Prime Minister’s challenge on dementia 2020** sets out a series of commitments that aim to make England the world leader in dementia care, research and awareness. Yet despite this there is a need to improve policy, planning and research in relation to people with learning disabilities and dementia.
We know that this population is increasing as people with a learning disability are living longer due to improvements in health and clinical practice. But we also know that the most appropriate health and social care services are not always available at a time when people need them most.
Today’s 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.
Alzheimer’s Society chief executive Jeremy Hughes CBE said:
“Alzheimer’s Society is pleased to have supported the work of the VODG in developing dementia friendly care and support for people with learning disabilities.
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.”
VODG chief executive Dr Rhidian Hughes said:
“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.”
National Care Forum Executive Director, Vic Rayner, 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.”
Foundation for People with Learning Disabilities programme lead Christine Burke said:
“We welcome this very timely report highlighting the need for early diagnosis of dementia in people with learning disabilities. This 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.”
Notes for editors
The partnership of organisations preparing the report are: VODG (Voluntary Organisations Disability Group), Alzheimer’s Society, Foundation for People with Learning Disabilities, MacIntyre and the National Care Forum (NCF).
The report was funded through the voluntary sector strategic partner programme which is backed by the Department of Health, NHS England and Public Health England. The grant supporting the work is held between VODG and the National Care Forum.
An earlier report, Dementia, Equity and Rights, explores the incidence and experience of dementia for people within protected minority groups. Accessed: https://www.vodg.org.uk/publications/dementia-equity-and-rights/
* Largest English study into health and care of people with learning disabilities. Accessed: http://content.digital.nhs.uk/article/7550/Largest-English-study-into-health-and-care-of-people-with-learning-disabilities-published-today
** Prime Minister’s challenge on dementia 2020. Accessed: https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020
To download a free copy of the report please visit www.vodg.org.uk once the embargo has lifted. For an advance copy of the report please email email@example.com.
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