We at Brainmatters mainly focus on the science part of the brain, but it's also interesting to take a look into the clinic. Selma Coumans is a psychologist for people with dementia. She has been working at Sevagram, an elderlycare organization, as a psychologist for two years now and has been volunteering with people with dementia since she was 17. Soon she will become a health care psychologist. She has set aside some time for us to tell us what it's like to work with people who suffer from dementia. 

Selma, you have actually been working with people with dementia for almost 10 years now. What interests you so much about this population?

Gee, ten years already? Yes, you are right. There are several things that attract me to this group. Firstly, no two days are ever the same. People with dementia can often be unpredictable. One time you might have to deal with aggressive behaviour and the next you might get a hug. Being able to deal with all kinds of out of the ordinary and unexpected situations is something I find very interesting. Secondly, most psychologists treat through conversation techniques. But this is often not possible with clients with dementia. The learning ability is often gone and there may be problems with spoken language. So you have to take a different approach with this target group. You mainly look at the system. By this I mean the people around the client such as the caregivers, family, and practitioners. Although you can't teach the client himself new things, you can teach the environment and adapt the physical environment. That's why, as part of treatment, I can talk to managers to adjust the policy in the nursing home. For example, about how we design the corridors. Dead-end empty white corridors can be frightening for people with dementia who wander. I try to place myself in the shoes of people with dementia. A policy where we commit to experiential murals can enhance quality of life for several clients. 

"I try to empathize with the perception of people with dementia"

We all have an image of it, but what exactly is dementia? And how do you know whether it is dementia or ordinary ageing? 

This is a good question. First, dementia is an umbrella term for disorders involving problems with processing of information. These include, for example, Alzheimer's dementia, vascular dementia, Lewy body dementia, and fronto-temporal dementia. 

Normal ageing also involves decline in cognition. Someone aged 88 will most likely have a worse memory than someone aged 25. To find out whether it is dementia or normal ageing, we do several tests. We compare the scores of these cognitive tests with those of people of the same age and education level. This way, we can see if people score abnormally compared to their peers. In addition, it is important to find out, through conversations, how problematic the information processing problems are for the client's daily life. For example, could it create dangerous situations? I also try to get an idea of the progression of the problems. Is there a sudden deterioration? Or is it very gradual? We also have conversations with the client's partner or children. There is no single test that can show whether you have dementia or not. We look at the overall picture to make a diagnosis.

"There is no one test that can show whether you have dementia or not."

Are there different types of dementia? So what differences do you notice? 

There are many different types of dementia, and multiple syndromes can occur at the same time. But the most common types are:

Vascular dementia

This is caused by problems in blood flow to the brain. There may be "clots" in the brain's blood vessels that cause part of the brain to temporarily lack oxygen (a stroke), causing those parts of the brain to malfunction. In this case, every time there is a stroke, people can deteriorate by leaps and bounds. The clinical picture can vary depending on where that clot is. In addition, there is not only memory loss, but also difficulty recognizing things, forgetting words, paralysis of the body, and problems in emotion processing.  

Alzheimer's dementia

Alzheimer's is caused by the breakdown of neurons. This is because proteins (amyloid) accumulate and form "plaques". Tangles of proteins form between brain cells. Eventually, this causes the brains of people with Alzheimer's to shrink. The first symptoms are often a gradual decline in memory. Because the progression is so gradual, many people are good at 'disguising' the initial symptoms. For example, if people make good use of an agenda, it is not so noticeable that they are becoming more forgetful. In addition, you often see people with Alzheimer's say they "no longer like" doing activities and become more passive, when the actual reason is that they can no longer do them. Noticing that you are gradually deteriorating like this is very difficult.   

Fronto-temporal dementia 

In fronto-temporal dementia, the frontal lobe becomes damaged and shrinks. This part of the brain regulates our behaviour. This is where choices, plans and decisions are made and actions are coordinated.The exact cause is still unknown, but it seems to have a strong genetic component. This form of dementia is more common in younger people (most are between 40 and 60 year old). In this form, inhibition is particularly affected, which can cause a change in character. The environment is often embarrassed by the client's sudden behavioural changes. For example, a sweet woman with a gentle nature may suddenly start swearing. 

Lewy body dementia 

In this type of dementia, the symptoms people experience fluctuate a lot. At a peak time, these people may seem to have no dementia, but at other times they are very confused. Symptoms can vary over the day and even by the hour. With this form of dementia, there is also a higher risk of hallucinations. The cause of Lewy body dementia is in the brainstem, where heaps of protein deposits (called Lewy bodies) form and cause damage. 

Progressive deterioration of memory is central to dementia. What do people with dementia often forget first? And are there also things that people are less likely to forget? 

Although the progression can vary greatly from person to person, we often see that the things we learn last are also the first to be forgotten. People with dementia actually slowly go back to childhood. At first, they forget everyday things like operating a new device. At a further stage, you see that executive functioning, emotion regulation, and self-reflection deteriorate (so basically what you learned in your teenage years). Last, people forget things they learned as babies, such as swallowing 

You often see that memories linked to strong emotions are forgotten later on. These tend to be things from childhood. Songs from the past or family members are often recognised for longer. However, sometimes this also lapses, which of course can be very painful for loved ones. 

"People with dementia actually slowly go back to childhood."

As a psychologist, what can you do for these people? 

First, identifying the issues, the diagnostics. The questions can vary a lot. For example, are we dealing with someone with dementia? Or someone who has lost his wife and sometimes forgets things due to depression? When there is problem behaviour, I try to understand where the behaviour comes from. For example, there is a client in the nursing home who starts hitting when he needs to be washed. I spoke to his family and found out that he had been abused in childhood and that physical touch causes an anxiety response in him. Then I try to find a solution. Can this person perhaps still do some of the care himself? Or will it help if we approach him in a different way? 

Life on a psychogeriatric ward is no party, because you live here if you have advanced dementia and are therefore seriously ill. I try to contribute to ensuring that people on these wards receive the best possible care, thus making their quality of life as high as possible. I am constantly working on understanding clients and the system, connecting, and seeing what I can add. 

There are many people who know someone close to them with dementia. Do you have any tips for us on how best to deal with people with dementia? 

It is good to put yourself in the other person's shoes first. The feelings of people with dementia are real, even if their perception differs from reality. If an 80-year-old client experiences stress because she thinks she lost her mother, this emotion is genuine. Even if in reality the mother died years ago. Don't just point out that the mother died a long time ago, but try to understand her and see if you can then distract her with another activity. In the end people with dementia are just people like you and I, experiencing pain and grief and want to feel understood. Besides, having someone around you with dementia is tough. So take time for yourself so that you can continue to care for the other person. The disease can also cause you grief, which is allowed to be there. That is perhaps the most important thing. 

“The feelings of people with dementia are real, even if their perception differs from reality.”

Author: Pauline van Gils