Major research into early-onset dementia

An estimated 14,000 to 17,000 people in the Netherlands develop the first symptoms of dementia before the age of 65. For research into this specific group of younger people with dementia, a national consortium has received more than EUR6 million from ZonMw (The Netherlands Organisation for Health Research and Development) within the Dementia Research Program. Vilans is one of the parties in the consortium, YOD-INCLUDED (Young Onset Dementia-INCLUDED).

A group of about 1,000 people will be followed over the next four years as part of the study. Raymond Koopmans of Radboudumc Alzheimer Center/UKON says, ‘This group forms the backbone of our research and is unique in the world in terms of its size and design. We put the person with dementia and their loved ones in the driving seat of the study and they themselves decide which parts they will participate in and for how long.’

Diagnosis of dementia

Vilans researcher Tara Koenders says, “If someone changes their character around the age of 50, becomes somewhat despondent, overworked or even gets fired for being ineffective at work, you don’t immediately think of dementia. That’s why it often takes longer for these people to be diagnosed. When someone develops dementia at a young age, the underlying diseases are also different. For example, dementia of the frontal and temporal lobes, called Frontotemporal (FTD) dementia, is a more common occurrence or form of Alzheimer’s disease that does not start with the characteristic memory problems. Also, early-onset dementia is more likely to be inherited.’

Inherited risk

Of both Alzheimer’s dementia and frontotemporal dementia, inherited risk is known to play an important role. However, much of the inherited risk of dementia is still misunderstood. That is being investigated further in this program. It also explores how to ensure that people with symptoms of dementia other than, for example, decline in memory and change in behaviour receive a faster and better diagnosis.


The YOD-INCLUDED (Young Onset Dementia-INCLUDED) consortium is a large national collaboration. The name indicates that it closely involves experienced experts in all phases of the research, including as many people with early-onset dementia and their loved ones as possible. The group is also seeking broad diversity in terms of level of education, socioeconomic status and migration background. The consortium is led by the Radboudumc Alzheimer Centre/UKON (Prof. Dr. Raymond Koopmans and Dr. Christian Bakker) and the Alzheimer Centre Amsterdam UMC (Prof. Dr. Yolande Pijnenburg).

Vilans, Alzheimer Nederland, people with FTD, the Dementia at a Young Age Knowledge Centre, Hogeschool Leiden, Erasmus University and the Alzheimer Centres of Limburg, UMCG and Erasmus MC are also part of this consortium.