Dementia risk – to know or not to know?

BMC Medicine has published an article investigating whether routinely collected data can predict dementia risk. Clare Walton of Alzheimer’s Society explains more.

A new algorithm uses routinely collected primary care data to predict a person’s risk of developing dementia in the next five years. But without definite ways to prevent dementia or very accurate prediction methods, would you want to know? If I was approaching my later years, I’m not sure I would.

Dementia is now the most feared condition in those over 55, which isn’t surprising given that almost every week there is a news story linking some factor or other to an increased risk of developing the condition. Unfortunately, some of these factors, such as short height, are out of our control and are not helpful. But there are factors we can change, such smoking, sedentary lifestyle, or high blood pressure, which can be useful for people to start thinking about ways to reduce their own risk.

Today’s dementia risk score is not the first to be published, but it is the first one that doesn’t require any additional data to be collected from patients. This is a huge plus. By using data already collected in The Health Improvement Network (THIN) database, this tool could be easily integrated into our health service and used by GPs during patient consultations. The question is – would we want it to be?

For people aged 60-79, the score could identify those at a very low risk of developing dementia in the next five years with 85% accuracy.

The new Dementia Risk Score has been developed and tested using almost 1 million patient records, so there is no doubt that it is a robust study. For people aged 60-79, the score could identify those at a very low risk of developing dementia in the next five years with 85% accuracy. This means that more than 1 in every 10 people who were told they were at very low risk would still go on to develop the condition.  Still, as long as this uncertainty could be clearly explained, I imagine this would be a very reassuring message to receive.

The more useful task of identifying those at a high risk of dementia was harder and, in my opinion, the score didn’t perform well enough to be used in a clinical setting. Unless the algorithm is further refined, dementia risk would be incorrectly predicted too often and could cause more harm than good.

With cases of dementia in the UK set to reach 2 million by 2051, we shouldn’t just be searching for new treatments; we also need to be looking for ways to prevent the condition.  These risk scores, combined with research to test risk reduction programmes, will make up a vital part of our armory against dementia, helping to reduce the devastating impact on families, our health service, and our economy.

With the fear surrounding dementia and the current gaps in our understanding, dementia risk predictors need to be used with caution until they can be improved further. Before we start routinely giving people a risk score in clinics, we need to look into the impact this information will have on wellbeing and on the standard of care that people receive.


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