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‘Challenge assumptions about dementia in learning disability patients’

Dementia Action Alliance says nurses must not be afraid to intervene on behalf of learning disability patients they believe have symptoms of dementia.
Gwen Moulster

Nurses must not be afraid to intervene on behalf of learning disability patients if they believe they are showing signs of dementia, delegates at an event in London heard.

The conclusion was among those made at the round table event this month, organised by the Dementia Action Alliance (DAA) and held at the RCN in London.

Raise awareness

Delegates including RCN professional lead for learning disabilities Ann Norman and independent learning disability consultant nurse Gwen Moulster discussed a DAA campaign to boost awareness of the condition among learning disability patients.

One in ten people with a learning disability develop early-onset Alzheimers between the ages of 50 and 65, while one in 50 people with Down syndrome develop early-onset

Nurses must not be afraid to intervene on behalf of learning disability patients if they believe they are showing signs of dementia, delegates at an event in London heard.


Independent learning disability consultant nurse Gwen Moulster stressed the need to pass on detailed medical histories for patients with learning disabilities. Picture: Tim George

The conclusion was among those made at the round table event this month, organised by the Dementia Action Alliance (DAA) and held at the RCN in London.

Raise awareness

Delegates including RCN professional lead for learning disabilities Ann Norman and independent learning disability consultant nurse Gwen Moulster discussed a DAA campaign to boost awareness of the condition among learning disability patients.

One in ten people with a learning disability develop early-onset Alzheimer’s between the ages of 50 and 65, while one in 50 people with Down syndrome develop early-onset Alzheimer’s between the ages of 30 and 39, according to DAA research.

The organisation revealed several case studies highlighting the struggle to identify the condition. The most common problem was that doctors mistakenly attributed symptoms of dementia to the person’s disability, the DAA said.

Challenge doctors

Ms Norman believes learning disability nurses need the confidence to step in and challenge such a decision if they believe a mistake has been made.

She also says nurses must fight to help patients remain in their own home, with family or friends, if they know that is what they want.

Ms Norman said: ‘There is a nervousness that comes with wanting to do the right thing as a nurse. Sometimes saying nothing can be as bad as saying the wrong thing.

‘We need to see the changes in the person, but also see the person themselves; make sure they have the care that is right for them in the place that is right for them.’

Ms Moulster stressed the need to pass on detailed medical histories and case notes when transferring patients.

Timely diagnosis

Delegates agreed to call on the government to do more to protect vulnerable people and ensure they get access to early diagnosis, as well as the tailored care they require.

DAA executive lead Phil Freeman said: ‘A person with a learning disability may not fully understand a diagnosis of dementia or what it will mean for them. They may present with behavioural changes rather than memory loss.

‘Symptoms may be mistaken for a pre-existing disability and therefore they are less likely to receive a timely diagnosis.’


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