Publications

Research into Alzheimer’s disease is increasingly focusing on measuring biological markers in the blood, brain and spinal fluid that may reflect early underlying changes in brain health, so called biomarkers. With the discovery and development of biomarkers that may inform an individual’s level of risk for Alzheimer’s disease comes important new ethical considerations. Whilst the accuracy of these biomarkers still need much refinement, weighing up the harms, benefits and rights of risk disclosure to healthy adults will also require much careful consideration before implementing guidelines into care. With the increasing use of such biomarkers in research however, discussions of how best to communicate the value of these results have come to the fore. Central to the decisions of how to manage these discussions has to be the view of patients and research participants.

Focus groups featuring PREVENT participants as well as people living with dementia were held to establish the attitudes and desires of those individuals for who disclosure of such risk information is most pertinent. This publication summarises the opinions voiced in those group discussions around areas such as how best to clearly disclose information and the type of support that should be made available after learning personalised results.

In this analysis, researchers were interested in the performance of PREVENT participants on a range of memory and thinking tasks in their mid-life to determine if there were any associations with increased risk of dementia in later life.

It is likely that traditional memory tests such as those used in memory clinic or in drug trials involving participants with established dementia may not be sensitive enough to identify the very earliest subtle changes in brain health. In this report the authors suggest that volunteers deemed at greater risk for dementia based on factors such as genetics and cardiovascular health, seemed to perform slightly worse on certain tasks, principally those which involved detailed spatial and navigation skills.

This initial data came from a relatively small number of the very first volunteers to enter the study. The results also come from only the first study visit and so capture only one snapshot in time. Whilst these findings alone are not enough to inform any one individual’s risk profile they do generate interesting areas to focus on when following participants throughout the duration of the study.

As research into novel treatments for dementia shifts towards earlier intervention and greater understanding of risk factors in a younger population, this generates important new issues of how best to manage risk disclosure. What are the implications of an individual learning their dementia risk? How should this best be communicated? And how might this impact on future life decisions?

To explore these types of questions researchers held focus groups with PREVENT participants to gather opinion on the consequences of these new topics. The discussions centred around the groups expectations on discovering test results that may have implications for risk of future dementia. The three key areas under discussion were; ‘Living At Risk’ – taking proactive steps to reduce risk, ‘Living With Risk’ – maximising cognitive health and accessing healthcare services and ‘Living Beyond Risk’ – planning for later life and adjustment to symptoms.

Increased wear and tear of the small blood vessels supplying the brain is known to be associated with Alzheimer’s dementia in older people. Researchers studied the MRI brain scans of 160 PREVENT participants to see if they could identify any signs of greater wear and tear in those middle-aged participants deemed at potentially higher risk of developing Alzheimer’s disease. The level of risk attributed was based on genetic influences; having a parent with dementia and the version of a particular gene (the APOE gene) that someone has.

The group did not find any overall difference in the condition of the blood vessels between participants designated at increased risk of Alzheimer’s compared to those at lower risk. This might suggest that these brain changes happen closer to the onset of Alzheimer’s symptoms and were not yet present in our younger volunteers – with an average age of 51. The scans only captured one snapshot in time and so the group are keen to look at how the brains of PREVENT participants may change as they attend future follow up visits.