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Dementia awareness and diagnosis: looking beyond the learning disability

How an Admiral nurse aims to empower individuals and help nurses identify early age dementia

How an Admiral nurse aims to empower individuals and help healthcare professionals identify early age dementia

Picture: iStock

For people with learning disabilities, dementia can happen at an earlier age than in the general population, but it may not be spotted until much later.

People see the learning disability first, says Jane Nickels, who qualified as a learning disability nurse in 2007. So there is a tendency to assume someone has always behaved in a particular way, rather than thinking there is something more happening.

More timely diagnosis of dementia is a priority

Now, as the UKs first specialist learning disability Admiral nurse, she is on a mission to raise awareness and improve services and health outcomes for this group of patients. One of my aims is to achieve more

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How an Admiral nurse aims to empower individuals and help healthcare professionals identify early age dementia

Picture: iStock

For people with learning disabilities, dementia can happen at an earlier age than in the general population, but it may not be spotted until much later.

‘People see the learning disability first,’ says Jane Nickels, who qualified as a learning disability nurse in 2007. ‘So there is a tendency to assume someone has always behaved in a particular way, rather than thinking there is something more happening.’

More timely diagnosis of dementia is a priority

Now, as the UK’s first specialist learning disability Admiral nurse, she is on a mission to raise awareness and improve services and health outcomes for this group of patients. ‘One of my aims is to achieve more timely diagnosis,’ says Ms Nickels, who took up her post in May.

‘Dementia isn’t curable, but if it’s diagnosed at an earlier stage, more can be offered to ensure that person has a meaningful and purposeful life.’

Life expectancy for people with learning disabilities is much shorter

Healthcare staff may not always know that some people with a learning disability can start to develop dementia while in their forties, Ms Nickels says.

Overall, life expectancy for people with learning disabilities is much shorter, with only 37% living beyond age 65, compared with 85% of the general population, according to the annual learning disabilities mortality review.

‘People see the learning disability first. There is a tendency to assume someone has always behaved in a particular way, rather than thinking there is something more happening’

Jane Nickels, specialist learning disability Admiral nurse

‘Even for those without a disability, diagnosing dementia can be tricky,’ says Ms Nickels.

‘Without understanding that dementia can happen at a much younger age, signs could be missed at the early stages.’

New post combines two long-standing interests

Having worked as a support worker for people with learning disabilities, Ms Nickels did her nurse training at Greenwich University. She also spent five years working at a day care centre run by the Alzheimer’s Society before she qualified.

In her new post, developed through a partnership between the learning disability charity MacIntyre and Dementia UK, she has an opportunity to bring together her two long-standing interests.

‘When I saw it advertised, I couldn’t stop thinking about the job and the difference it could make,’ she says. ‘I stumbled into working with people with learning disabilities as a young person, but my interest developed very quickly.

Jane Nickels
Jane Nickels: ‘Even for those without a
disability, diagnosing dementia can be tricky’

‘This group can be very disadvantaged in society, facing stigma and sometimes abuse within the community. Recognising this gave me a passion to promote independence and better outcomes.’

In her national role, Ms Nickels will focus on people with learning disabilities who are supported by MacIntyre and who may have dementia or have already been diagnosed with the condition.

Support for individuals and their families and friends could include practical steps, such as suggesting simple alterations to someone’s home environment, including lighting and flooring. ‘In one case, someone with dementia said that shadows being cast on a wall looked like a monster,’ says Ms Nickels.

Extra support for family and carers to empower individuals

She will also provide training and education to healthcare professionals to help them identify dementia and deliver better services. Another aspect is to improve the understanding of those who may share a home with someone with a learning disability who also has dementia.

‘They may live in a residential home or supported living, sharing with several others,’ explains Ms Nickels. ‘I strongly believe in empowering everyone so they can support that individual, having an awareness of dementia and its changing effects. It’s important to help people stay in their own homes if that’s what they choose.’

Funded for an initial two years, Ms Nickels’ role will also involve capturing as much data and evidence as possible to chart the difference the post makes to people’s lives. ‘In the future, I’m hoping that similar roles will be created,’ she says.

‘We are reaching those we just weren’t reaching before’

Victoria Lyons
Victoria Lyons: ‘It feels like a real achievement
to have a nurse working in this setting’

For senior consultant Admiral nurse Victoria Lyons, this new post is the culmination of several years’ work.

‘I’ve wanted to develop specialist support for a long time, trying several times,’ she says. ‘The appetite hasn’t always been there. I’ve worked in all kinds of sectors in the dementia world and there’s always been a gap.’

Often it can be because staff don’t feel they have the skills or expertise to make a diagnosis for someone with a learning disability. ‘A lot of the traditional tools we would use to assess someone for dementia don’t work for this group of patients,’ explains Ms Lyons.

In one recent example, a client with learning disabilities was asked questions such as “who is the prime minister?”. ‘There is no way she would ever have known those answers,’ she says.

‘A lot of the traditional tools we would use to assess someone for dementia don’t work for this group of patients’

Victoria Lyons, senior consultant Admiral nurse

After convincing Dementia UK there was a need to increase the support they offered for this group of patients, Ms Lyons successfully bid for funding, including from the Burdett Trust for Nursing.

The post is a collaboration with MacIntyre, which had previously run a project looking at raising awareness of dementia among people with disabilities, their families and professionals.

‘It feels like a real achievement to have a nurse working in this setting, we are reaching those we just weren’t reaching before,’ says Ms Lyons.


Lynn Pearce is a health journalist

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