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Black participants were less likely to want to know, too, which the researchers suggest could relate to greater experiences of stress, stigma and discrimination, making the prospect of a positive test result feel more threatening. Perhaps the question here is not why more people didn’t want to know the result, but whether researchers should routinely offer them at all, given the lack of certainty of the results and the potential for distress. Another issue is their limited usefulness for people without symptoms. Addressing lifestyle risk factors, such as eating a healthy diet and getting regular exercise, can reduce cognitive decline, a message the public is increasingly aware of. But knowing your risk doesn’t change the advice. In contrast to areas like breast cancer, where people at high risk of the disease can be offered preventative measures, such as drugs, surgery or enhanced screening, there are no comparable interventions to reduce dementia risk in people without symptoms. The authors of the new study explain that researchers used to be cautious about not sharing test results with participants in Alzheimer’s studies. But now there’s a growing expectation that people will be given their results. A proposed “bill of rights” for dementia research participants includes the right to get their results and have them clearly explained. It’s hard to explain how uncertain these results can be. People often worry about getting dementia in general, not just Alzheimer’s, which makes up about two-thirds of all cases. Some people who are told they have a low risk of Alzheimer’s may still develop another form of dementia, such as vascular dementia. The wider science that produced these future risk estimates has enabled the development of new diagnostic technologies unimaginable ten years ago. Similar blood tests can detect Alzheimer’s disease pathology in people with cognitive symptoms with over 90% accuracy, potentially enabling more accurate and timely dementia diagnoses.
Blood tests
Two major UK research programmes are piloting these blood tests in the NHS to support the more accurate diagnoses of some forms of dementia, including Alzheimer’s disease. Improved and earlier detection is needed: a third of people with dementia in England and Northern Ireland are never diagnosed. The benefits of the first drugs to slow the progression of Alzheimer’s disease are modest. In the UK, the National Institute for Health and Care Excellence hasn’t yet been convinced that these drugs are worth the cost for the NHS.



