New NICE guidance supports lumbar punctures to accurately diagnose dementia

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By Alice Tuohy | Tuesday 19 June 2018

Update also promotes opportunities for people with dementia to take part in research

Alzheimer’s Research UK is applauding new NICE guidance on providing treatment and support for people with dementia that was last updated 12 years ago. Among the new recommendations published today is a change in the recommended method for diagnosing dementia.

The recommendation previously suggested limiting the analysis of cerebrospinal fluid (CSF) for dementia diagnosis, but the updated guideline highlights the potential benefits of this procedure to aid the diagnosis of Alzheimer’s disease if the exact cause of someone’s symptoms are uncertain. A CSF examination can determine whether the hallmark proteins involved in Alzheimer’s disease are present in people showing symptoms of the disease. This, along with other tests such as memory and thinking tests and brain scans, can help a doctor give an individual an accurate diagnosis.

The guidance also encourages health and care professionals to inform people with dementia about how they can get involved in research studies through Join Dementia Research (JDR), a service which matches people interested in taking part in dementia research with suitable studies. Under the Challenge on Dementia 2020, the government has outlined a goal to ensure 25% of people newly diagnosed with dementia join JDR by 2020.

The original guideline on dementia was created in 2006. Alzheimer’s Research UK, the UK’s leading dementia research charity, wants to see future reviews of this guideline take place more frequently as our understanding of dementia and how we treat it continues to develop.

The new recommendations are the result of a review by the National Institute for Health and Care Excellence (NICE) to which Alzheimer’s Research UK and other organisations submitted feedback.

Dr Matthew Norton, Director of Policy and Strategy at Alzheimer’s Research UK, said:

“In recent years research has shown CSF tests can be a valuable tool for the detection of Alzheimer’s and the inclusion of this approach could help provide an accurate diagnosis for people with the Alzheimer’s disease where a diagnosis is particularly uncertain. We still need more reliable ways of detecting diseases like Alzheimer’s, which is why it’s crucial to continue research to develop better diagnostic tools.

“We’re very happy to see the NICE guideline give additional attention to how health professionals can help people with dementia get involved in research. While a diagnosis of dementia can leave people feeling powerless, research represents a tangible way those individuals can regain some control and take action.

“Unfortunately, people with dementia are not always made aware of opportunities to be involved in research studies like those offered through Join Dementia Research. Although this is a key goal set out in the government’s Challenge on Dementia 2020, we must do more to increase awareness about opportunities for people to get involved in dementia research.”

To learn more about Join Dementia Research, visit


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Alice Tuohy