Dementia research: time for a broader perspective

For years, Hans Hobbelen, Professor of Ageing and Allied Health Care, has worked on improving care for people living with dementia. His work focuses on something that often receives too little attention: movement. “We still tend to focus mainly on memory and behaviour, while the brain controls many functions throughout the body. This means dementia affects far more than cognition alone,” Hobbelen explains. Many people living with dementia develop increased muscle tension, also known as paratonia. Hobbelen studies how care for this group can be improved.

When people think of dementia, memory loss and confusion are often the first things that come to mind. Understandably so. But according to Hobbelen, that is only part of the picture. “Movement disorders play a role in every form of dementia,” he says. “Our movements are controlled by the brain. When those control systems are disrupted, movement changes as well.” Research even suggests that walking patterns may begin to change years before the first symptoms of dementia appear. Yet, in practice, this aspect still receives limited attention.

Not unwillingness, but a reflex

At a later stage of dementia, muscle tension can increase significantly. This is known as paratonia. “It is a form of increased muscle tension that causes people to stiffen up,” Hobbelen explains. Healthcare professionals sometimes interpret this as resistance or unwillingness to cooperate. According to Hobbelen, that interpretation is often incorrect. “It is not a behavioural issue, but a reflex. The brain becomes less able to suppress muscle tension.” This misunderstanding can have consequences. People are sometimes prescribed medication aimed at behavioural problems, even though, as Hobbelen notes, “that does not solve the problem.”

Limited knowledge about paratonia

More than thirty years ago, Hobbelen started working as a young physiotherapist in a nursing home, where he cared for people living with dementia. At the time, physiotherapists commonly used passive movement exercises in the mornings, moving patients’ arms and legs in the hope of reducing stiffness.

Hobbelen used this approach himself until one remark made him stop and think. “A care worker said to me: ‘How nice that you’ve already visited Mrs X today.’ But I had not been there yet.”

That moment sparked the start of his PhD research. Across several nursing homes, he compared residents who received passive movement treatment with those who did not. The results were striking: passive movement did not help. In fact, “my research showed that passive movement actually made people stiffer.”

National impact

A treatment that had long been standard practice in nursing homes quickly disappeared. “Change in healthcare is often difficult,” Hobbelen says. “But in this case, it happened relatively easily. Many physiotherapists already questioned whether the treatment worked, but there was no evidence to prove otherwise. Suddenly, there was.”

Instead, physiotherapists and other care professionals are now given greater responsibility in determining treatment approaches. Teams define treatment goals, monitor whether interventions are effective and adapt their approach where necessary.“It is about clinical reasoning together: discussing with colleagues whether you are on the right track or whether another approach may work better.”

Research into what does help people with paratonia

Hobbelen and colleagues within the professorship investigate approaches that may help people with paratonia. “One of the key elements is moving slowly,” Hobbelen explains. This principle is reflected in the PDL methodology (Passivity in Daily Living).

Within the Parease project, researchers investigate whether the PDL methodology can support people living with paratonia. The approach is person-centred and focuses on reducing muscle tension, pain and stress. The goal is to improve quality of life for people with paratonia while reducing strain on care professionals and family members.

The team also studies new ways of accurately measuring muscle tension in paratonia. This research is carried out together with national and international partners, including the Vrije Universiteit Brussel, the UMCG and the University of Toronto.

A broader perspective on dementia

Hobbelen hopes dementia will increasingly be viewed from a broader perspective. This wider lens is not only important for care, but may also open up new directions for prevention. If changes in movement can already be observed at an early stage, important questions arise. Could dementia be identified sooner? And perhaps even more importantly: could increased physical activity help reduce the risk of dementia? If so, the implications for quality of life and healthcare costs could be substantial.

Continuing to raise awareness

For now, Hobbelen continues to challenge how people think about dementia. He does this through research, but also by actively sharing knowledge. He teaches future healthcare professionals, including students at Hanze, and regularly gives lectures to healthcare professionals across the Netherlands and abroad.