It is precisely by working together, including internationally, that we can make progress.
Arfan Ikram en Pieter Bakx
Medical practitioner (Arfan Ikram) - Health economist (Pieter Bakx)
More and more Dutch people are suffering from and dying of dementia. How can we get this widespread disease under control? And what does dementia demand of our healthcare system? With support from the Erasmus University Rotterdam Fund, physician Arfan Ikram and health economist Pieter Bakx hope to contribute to the answers to these questions.
Partly due to the ageing population, dementia is the fastest growing cause of death in our country, according to Statistics Netherlands (CBS). By 2050, there could be more than 600,000 Dutch people with dementia. Dementia is a growing social problem, but above all, it is a terrible disease. Symptoms such as memory loss, anxiety and disorientation increasingly isolate patients. There is still much we do not know about this complex condition. More knowledge is needed to make the right choices in both the medical and social spheres.
Pioneers in dementia research
Prof. Arfan Ikram has been involved in dementia research since 2001, currently as head of the Epidemiology department at Erasmus MC. ''At the beginning of this century, it was already clear that dementia would become a major problem,'' he says. "But research was in its infancy for a long time. We set up a Dementia research line within the ERGO study. This is a long-term study in the Ommoord district of Rotterdam, which we use to map connections between old age and health. This made us one of the pioneers in this field. The problem with dementia is that there is no single form. It is a collective term for all kinds of subtypes, such as Alzheimer's, Parkinson's and vascular dementia. There is also no single cause, so we are investigating the risk factors: genetic factors, but also lifestyle, for example. And we know that the social environment plays a role. Lonely people, for example, are often less active physically and mentally, which is bad for the brain."
At home or in a nursing home?
As associate professor of Health Economics at Erasmus University Rotterdam, Dr. Pieter Bakx researches the intersection between policy and healthcare. Bakx: "Treatment by medical and nursing staff is essential, of course, but the structure of the healthcare system also determines the care we receive. A specific example: people suffering from dementia need more and more help. So when is the right time for them to move into a nursing home? This determines the care they receive, but also changes the role of the informal carer. Over the past thirty years, politicians have opted to allow patients to live at home for as long as possible. This seemed like a win-win situation, because it meant lower healthcare costs and more freedom for the patient. However, our research showed that this is certainly not a given. It did not always result in savings, and moreover, people in nursing homes are not necessarily unhappier or lonelier. It also depends on how you organise the nursing home and how you facilitate the home situation. And is there room in the nursing home? We have seen that being on the waiting list for longer has relatively many negative consequences for people suffering from dementia.''
Predicting dementia
How can we learn more about the disease and recognise it better? Ikram: ''With a stroke or heart attack, there is a moment when you can say: now it has happened. Dementia is more insidious. We have discovered that by the time the diagnosis is made, there may already have been signs of damage to the brain for fifteen to twenty years. Unfortunately, these symptoms are sometimes the same as those of depression, for example. The reverse also happens, with people developing dementia even though their brains show no damage. It is literally a matter of life and death that we are able to predict the disease more accurately. In 2019, we developed a prediction model based on the ERGO study. We are now trying to improve this model. We extract a lot of data from patients' MRI scans. After all, you can't take a biopsy of the brain. We are now achieving a predictability rate of between 70 and 85 per cent. We can call that a success! But the next step is: what do we offer the patient? We can tell someone that there is a high chance that they will have dementia in ten years' time. But we also have to offer them a perspective, a prevention or care pathway. The link with clinical practice is an important aspect of our research.''
Patients' life paths
Bakx: "In the research we are conducting with the support of the Erasmus University Rotterdam Fund, we are focusing partly on patients under the age of 65. Some of them still had a job. But we see that in the years before the diagnosis of dementia, some had already started working less. This probably relates to those early symptoms that Arfan mentioned, which may not always be clear-cut. Burnout or depression is often suspected and assumed to be temporary. We also see that a relatively large number of these people end up on social security benefits rather than on sick leave. If we know earlier that someone is suffering from early-stage dementia, we can provide them with the right support in the work process. For example, by making adjustments to their job. That also contributes to their happiness in life.
The amount of care we need to provide is only increasing,‘ Bakx continues. ’How do we make the right choices for the patient and society? The research that Arfan is leading helps us to ask the right questions. Conversely, the life paths of patients as we map them out provide input for his research." Ikram agrees: ‘You can't approach such a large and complex problem from a single discipline. It is precisely by working together, including internationally, that we can make progress.''