A reliable and timely diagnosis for people with dementia

When a person is suspected of having dementia, their GP tests their behaviour, memory, language ability and concentration. Where necessary, the GP will refer the person to a specialist at a memory clinic or the neurology department of a hospital. Various tests can be taken at the hospital, such as neurophysiological tests, blood tests, brain scans and/or possibly a lumbar puncture. This will allow the physician to give a more conclusive assessment for a possible dementia diagnosis.

This may all sound straightforward, but diagnosing dementia is not that simple. There are many different types of dementia. Damage in the brain can often manifest itself in multiple ways in people and memory clinics use different methods to make a diagnosis. We therefore need more knowledge and expertise to improve diagnostics. ZonMw is committed to ensuring a reliable and timely diagnosis for people with dementia and is working in several areas to achieve this.

There are multiple ways to reach a diagnosis and each memory clinic has its own preference. To harmonise this process, the TAP Dementia Consortium of the Dementia Research Programme is going to devise a single test and implement it nationally. Implementation will be facilitated by the establishment of the National Memory Clinic Network, which was set up in the ABIDE project that is part of the ZonMw-programme Memorable. Online tests that measure memory problems at home are being implemented by Amsterdam UMC. In addition, expertise and tools have been developed to set up the diagnostic process for people with a migrant background.

Biomarkers, which are substances produced by the body such as proteins, are increasingly being used to accurately diagnose dementia. These include proteins such as Amyloid and Tau. Researchers in the TAP Dementia Consortium and researchers with a fellowship grant are looking for new protein markers. The researchers also want to find out whether you can detect the proteins in the blood so that fewer people will need an invasive lumbar puncture. Ultimately, the Dutch researchers’ aim is to introduce a dementia passport: a personal fingerprint for the different types of pathology.

Getting a diagnosis is important for people who feel that something is wrong. Effective communication is crucial. The ABIDE project showed that people with dementia and their loved ones are left with unanswered questions after seeing the physician about the diagnosis. This is why a list with discussion topics was designed in this project to help people with dementia, their loved ones and physicians. Research on communication is also being carried out in the TAP Dementia and ABOARD consortiums.

When will someone develop dementia? If we could answer this question, people at risk of developing dementia would have a better indication of their life expectancy, providing them and their loved ones with a clearer picture of what to expect.  This is why researchers working in the ABOARD project and at Amsterdam UMC are conducting research on this. Research in the ABIDE project, for example, has led to the development of an App that represents a person’s risk of developing dementia as a percentage.

Biomarkers are making it increasingly easy to diagnose Alzheimer’s disease before a person develops symptoms. This raises ethical questions, especially as dementia cannot be cured. Is early diagnosis desirable? How can healthcare practice deal with it? Tools that healthcare providers and patients can use when faced with an early diagnosis have been developed based on research conducted by Erasmus MC and within the ABOARD project.