Patient information alone does not improve timely diagnosis rates, study shows

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By Philip Tubby | Tuesday 14 March 2017

PLOS Medicine: Effectiveness of an intervention to facilitate prompt referral to memory clinics in the United Kingdom: Cluster randomised controlled trial

A trial aimed at improving the timely diagnosis of people with dementia, by empowering patients with information from their GPs about the symptoms, has shown no difference in the proportion of people being referred to a memory clinic. The study is published in the journal PLOS Medicine on Tuesday 14 March.

Diagnosing dementia has always been challenging and in England, only 67 per cent of people living with the condition have an accurate diagnosis. This can be due to a number of factors, including difficulty diagnosing in the early stages, the slow progression, and limited public awareness of the diseases that cause dementia. Typically, if a GP suspects that a patient may have dementia, he or she may refer the patient to a memory clinic or specialist to make a diagnosis.

People in London, Hertfordshire and Essex, who were aged over 70 and at a higher risk of developing the condition, were randomly allocated to either receive a personal letter and an informative leaflet from their GP practice, educating them about dementia and the benefits of early diagnosis, or no information.

The results showed that while the trial was successful in encouraging more people to attend an appointment with their GP to discuss potential memory issues, the intervention did not result in more timely access to services or an overall increase in diagnoses of dementia. Overall, the proportion of people referred to a memory clinic for further investigation was the same in both groups. As a result, the researchers concluded that empowering the public is not enough in itself to achieve this goal, but that GPs also need to be targeted about communicating the benefits of an early diagnosis.

Dr Matthew Norton, Director of Policy at Alzheimer’s Research UK, the UK’s leading dementia research charity, said:

“It is disappointing that this trial did not achieve the results the researchers hoped for, and it will be important for future studies to explore alternative approaches to improving timely diagnosis. Dementia is the most feared health condition for the over 60s and it’s possible that the people who visited their GP may have been ‘worried well’ who did not need to be referred for further testing. Future studies should investigate how best to ensure information reaches those in the early stages of dementia. An early diagnosis can be crucial for people with dementia, helping them to make better sense of the symptoms they are experiencing, and allowing them to access to the right services and plan for the future.

“These results suggest that to increase timely diagnosis, both GPs and patients may need targeting with information about dementia and the importance of a diagnosis. We know how challenging it is to diagnose dementia, particularly as the symptoms overlap with other health conditions, and research is crucial to improve diagnosis. We must continue raising awareness and investing in research if we are to offer doctors better tools to make an accurate diagnosis of dementia, and make a difference to people’s lives.”


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Philip Tubby