Nine in ten people want to know their brain disease risk
The anonymous online study, ‘The Global Brain Health Survey’, involved more than 27,500 people worldwide and was led by the Norwegian Institute of Public Health in collaboration with the University of Oslo. It was launched in June 2019 to investigate people’s views on brain health globally and further understand what may or may not motivate them to support their brain health.
The survey was available through Join Dementia Research and 9,869 of our volunteers took part, accounting for 91% of the UK participants.
The main findings were:
- 91 percent of respondents would definitely or probably take a simple test to learn about the risk of developing a brain disease.
- 86 percent would do so even if the disease could not be prevented or treated.
The findings were published in Frontiers in Public Health.
For most people (over 95 per cent) their main reason for taking a brain health test is to be able to slow down the development of a brain disease by seeking professional help and changing their lifestyle if they were at risk.
People believe lifestyle affects brain health
Dr. Rebecca Bruu Carver, lead author of the study at the Norwegian Institute of Public Health, said:
“It is surprising that so many people are willing to be tested for future brain diseases, even though it is not always possible to delay onset or cure them, such as Alzheimer’s disease. However, this finding shows that people strongly believe that lifestyle affects brain health.
“Although simple brain health tests are not yet available, we see an increase in commercial genetic tests for many conditions, with varying predictive power. Since this study shows there is high public interest in brain health testing, it is important that people understand the limitations of such tests.
“It is positive that so many respondents would change their lifestyle if they discovered they are at risk of developing a brain disease. However, we know from previous research that what people say and what they actually do can be two different things.”
About the survey
The survey was part of the EU research project “Lifebrain” in the Horizon2020 program. It was available in 14 languages and the answers came from participants in 76 countries.
Participants in the study were asked to consider a hypothetical brain health test that would tell them about their risk of developing an unspecified brain disease. Such a test is not currently available.
Most participants were from the UK (37 per cent), the Netherlands (25 per cent) and Norway (13 per cent). Most were over 40 (83 per cent), female (71 per cent) or had a university degree (71 per cent).
43 per cent of participants had previously taken part in brain health research, as more than half of the respondents were recruited via research registers. Many were therefore already interested in brain health and the sample is therefore not representative of the general population.
Thank you again to the Join Dementia Research volunteers who took part. New studies are being added to the service all the time so log in to your account and check out what studies you may have matched to.