11 November 2022

Better understanding of early-onset dementia after PhD research

In the five years before diagnosis, people with early-onset dementia were having symptoms that could potentially point to their developing dementia. This is one of the key findings of epidemiologist Stevie Hendriks after four years or research into early-onset dementia. Her research has brought knowledge knowledge of this condition a major step forward.

Signs Before Diagnosis

To properly help patients with early-onset dementia, it is crucial that they receive a diagnosis in time. In practice, however, patients sometimes have various symptoms for years without it becoming clear that it is dementia. Hendriks analyzed the care records of patients with early-onset dementia and made an important discovery: as early as five years before diagnosis, patients were already reporting complaints to their family doctor. Five years before the diagnosis, these are mainly cognitive complaints, such as problems with concentration and memory. Three years before diagnosis, there are often social complaints, such as problems with relationships or at work. One year before diagnosis, patients often experience problems in daily functioning.

"Of course, it is not easy for a general practitioner to link these kinds of symptoms to dementia," Hendriks explains, "often something else is thought of, such as stress or burnout. This is understandable: they often only see someone with dementia at a young age once or twice in their career. Hopefully, this study is nevertheless a step toward greater awareness and faster recognition by general practitioners."

Care After Diagnosis

Finally, Hendriks analyzed the course of care after people were diagnosed. For example, 43% of patients received some form of day care after the diagnosis and 44% were admitted to a nursing home. At the same time, Hendriks saw that some of the patients and their informal caregivers were initially reluctant to accept care: "that may have to do with the need to remain independent as long as possible. Or with the fact that people simply find it difficult to accept help or find appropriate help. It is important that general practitioners and caregivers realize this so that they can start the conversation about this with patients and their loved ones."

Follow-up research

It was recently announced that a national consortium, including researchers from Maastricht UMC+, led by Radboud UMC have received a 6 million grant from ZonMw for research into early-onset dementia. Stevie Hendriks will play a role in this research after her PhD: "we have been able to investigate many aspects with my research, but we are not there yet. That is why it is so important that we continue research into early detection, risk factors and appropriate care and support in early-onset dementia. I'm glad that this grant gives us the opportunity to do that and that I get to play a role in it."