People with learning disabilities are five times more likely than those in the general population to develop dementia.
This shocking statistic, included in recent NHS Digital and Public Health England research, reflects the health inequalities for people with learning disabilities.
The latest publication by VODG and our strategic partners, focuses on the issue of learning disability and dementia and explores 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.
The prevalence of dementia among people with a learning disability will surprise many, despite the fact the condition currently commands a high-profile.
The Prime Minister's challenge on dementia 2020 issued under the previous coalition government, sets out how England can be a world leader in dementia care, research and awareness. Across the UK there are over 1.7m "dementia friends" - people who have a basic understanding of what it is like to live with dementia and turn understanding into action. Last summer, actor Carey Mulligan was appointed the UK's first Global Dementia Friends Ambassador by Alzheimer's Society and health secretary Jeremy Hunt and now over 200 areas are signed up to become "dementia-friendly communities" - welcoming environments for people with dementia.
The disability sector has increasingly been turning its gaze to raising awareness and taking action on disability and dementia.
A strategic partnership of voluntary sector organisations is focusing on dementia and equality issues, including through a report, Dementia, Equity and Rights, about support within the context of the "protected characteristics" defined under the Equality Act 2010. In addition, the sector can make use of resources on dementia and equality prepared by the National Care Forum.
Despite this progress, we need a more targeted action on taking a rights based approach. The fact that the condition is now the leading cause of death in England reflects improvements in diagnosis rates. Timely diagnosis increases the chances of appropriate treatment, but dementia in people with learning disabilities is less likely to be detected in the early stage due to diagnostic overshadowing (when dementia symptoms are mistaken for behaviours related to the person's learning disability).
Timely diagnosis is also more difficult to secure for people with learning disabilities because they often present behavioural changes - rather than memory loss - in the initial stages of dementia. In addition, they may have physical health conditions that are not well managed, which can complicate diagnosis. As one staff member recently told us, "We found that out of 50 people with a learning disability and dementia, not one person had been seen by a specialist in dementia."
People with learning disabilities and dementia may already be receiving social care support, but staff may lack specific dementia knowledge or experience. This is despite the fact people with Down's syndrome, for example, are at greater risk of developing dementia at a younger age.
The challenge is to enable people with learning disabilities and dementia to continue to be supported in the ways in which they decide; whether that is in their own home, care home or using services in some other way. And, as the condition progresses, there needs to be good access to specialist services.
Care provider MacIntyre, a VODG member, launched a Dementia Special Interest Group in February 2011 to bring together staff from across the organisation supporting those who have developed or are at risk of developing dementia. The aim is to investigate and share best practice and provide peer support. A self-advocate group, Keep Going.......Don't Stop, is shaping resources for the sector by commenting on drafts and contributing ideas on what is important to people as they age.
Self advocate Rosie Joustra says: "My main message to either parents, carers or even support workers [is] make sure that people or a person with dementia can have that information, so that they know what they're facing."
Karen Duggan, MacIntyre's dementia project manager, says: "We know people with a learning disability are more likely to get dementia younger...but they're not included in that group [young onset dementia]. For example, if you go to conferences or to workshops quite often people with a learning disability are not mentioned". She adds that the aim of the dementia project is to "have people living well with dementia", enabling them to do things they enjoy and involving them in their community.
The MacIntyre team suggests care providers can improve support if all staff are aware of dementia, including the risks, the early indicators and the possibility of diagnostic overshadowing. A staff forum to share best practice and ideas is also important, as is ensuring that people supported by the organisation have opportunities to learn more about the condition and the choices available to them.
The latest report also suggests ways to improve the support of people with a learning disability who have dementia. Firstly, providers must monitor how many people they support have a learning disability and are living with or are at risk of dementia. This will help providers assess the scale of need, plan resources and consider dementia within their overall strategy.
Next, providers should adopt a rights-based approach, placing the person at the centre of planning their support. In addition, providers can ensure that staff have a level of training reflecting their degree of involvement in supporting people with dementia. All frontline staff in CQC-registered services, for example, must have awareness training; staff working directly with people with a learning disability and dementia will need more in-depth training.
Finally, providers can offer people with learning disabilities the opportunity to get involved in dementia research. Clinical researchers at universities need people for a wide range of projects. For example, the University of Cambridge is looking for volunteers to take part in their study of the causes of dementia in people with Down's syndrome.
The Cambridge study aims to find a treatment that, in the future, will overcome dementia in people with Down's syndrome. The idea is to discover early changes in the brain, which precede the clinical symptoms of Alzheimer's in people with Down's syndrome.
As we improve social care provision for people with a learning disability who have dementia or are at risk of developing it, we should try and progress clinical developments, encouraging disabled people to participate in research if they wish to. Stronger links between researchers and providers will offer up more opportunities for research participation.
Taking firm action to detect dementia will help people understand what is happening to them and make choices about their future which means a better chance of tailoring services and support to meet people's changing needs. As Rosie, who works with MacIntyre to advocate on dementia and disability, says: "It's about knowing how we can help others who may not know about dementia".