Interview with Maria from Demensliv/Mapia

On the 29th of June 2022 Otiom team had an opportunity to hold an interview with Maria T?nnersen from Demensliv. The purpose of the interview was to collect trustworthy information from the professional in the dementia field and provide readers with educative and engaging content.

About Demensliv “Demensliv ” or “Dementia life” started in 2017 with a dream of making life easier for all people who are in contact with dementia.?Demensliv ?consists of a team of the most skilled experts in the field of dementia in Denmark.?Demensliv ?and Otiom share the same values such as dementia awareness and increasing knowledge about this disease among every generation.

Demensliv ?contributes with new solutions and tools for e.g.: elderly care in the country's municipalities, people who suffer from a dementia disease, people who are a relative to a person who suffers from dementia, persons who work in the elderly area, and private companies.

About Maria T?nnersen

Maria is a specialist in the field of dementia and her specialty is moving people's preconceptions and discovering new possibilities.

“I trained as a nurse and that would be about 20 years ago. I worked 5 years in neurointensive nursing and what happened there is that I did the first real surgery - a brain surgery.”

While working in the public sector she was a neuro-nurse where she assisted during surgeries. Then, she moved from regional hospitals in the municipality of Aarhus to the public sector at Dementia Center. The purpose was to create a specialized team in dementia. At that moment there was a growing demand for advice and novels about dementia and the brain. So, people working in the public sector were in need of tools which Maria realized and later on created Demensliv with her colleague Pia.

“I've been part of the public sector for many, many years. And have actually worked with brains. I've been a neuro intensive nurse and I've been a manager in the public sector and particularly in the elderly and dementia sector.”

Moreover, Maria is a consultant for the state of Denmark when it comes to social care and the preparation of guidelines. The link between nursing and moving to the dementia field was according to Maria a little coincidence. However, it made perfect sense.

So, now let’s move on!

What is the definition of dementia? Who is the risk group for developing dementia? Is there a specific age, or ethnicity, or does it favor one gender over another? Is there any common misinformation about dementia that you have heard over and over again?

These and even more questions Maria has answered so keep on reading and do not forget to share the article with your audience!

“The disease approach is about the fact that there are more than 200 different conditions that can cause dementia. Dementia. In addition, there are 200 different basic conditions that can cause dementia, dementia has just as individual expression as all people have. Of course, there are some things that are common to the different forms of dementia.”

According to Maria dementia can be divided into 2 main parts: physical and relation part of it. She thinks that dementia or Alzheimer's is around because we have identified that as this. Basically, we think now a person has dementia because something is happening in the brain as previously you would live with dementia and not having a title of being dement. The person would be considered "just" old.

“There are actually a lot of studies showing that dementia is one of the diseases that causes the most loneliness, both among relatives and people with dementia. There is still a lot of taboo about what it means to have dementia.”

The best example that Maria mentioned was from Germany, where they have a possibility of a monastery in order to get a lot of brain material from corpses to investigate them. So, a lot of brain material was investigated, and the outcome of the investigation was that many of these nuns were having dementia. However, they have been working until death for example training or teaching. So, none of them have been laced as you should stay at home or closed in the room and not working. In fact, it was the total opposite because they have been working and having a social life as they have not been labeled as dements.

“It's just a bit about who gets dementia and why - they did a study at one point in Germany. Where they had brains donated from a nunnery. These were the brains of the former nuns, and they were examined for dementia. It turned out that some of these brains, had gotten enormously old and many of these donated brains had organic signs that they had dementia. But they didn't have the behavior, so that also says something about how these people had taught right up to the death, so the fact that they were needed may be important.”

The next question was focused on specific age or sex in terms of dementia. According to Maria, this is something that we cannot say broad as it is different when it comes to dementia. For instance, we talk about Alzheimer’s that is representing approx. 60% of all cases and it is primarily women. Then we know Lewy Body which is primarily among men.

Also, we have Parkinson's related dementia. It's not everyone who has Parkinson's who develops dementia, but many do.?“

So, we know different dementia types and therefore it differentiates. Also, so far, most cases are in the western world.

Maria is very interested in the Asian part of the world when it comes to dementia, especially Japan. They have by far the biggest group of elderly people as they also live for very long and there are regions of Japan that have nearly 0% of dementia. That means, getting old and having the same problems as other elderly people usually have but do not suffer from dementia.

When it comes to age it is for sure that the potential risk starts when you get older. For instance, women above 65 years would be more likely to get Alzheimer’s.

At the moment, there is a lot of focus on “why” we get more and more younger people suffering from dementia.?“We have a sense that there are more and more younger people with dementia because we are also getting better at diagnosing earlier. So, that might have a correlation.”?Some of the opinions claim that this can be linked to the stress level of nowadays population however Maria says it has never been concluded that this has something to do with stress.

“We have recently identified some lifestyle factors, so that also increases the risk, and we are getting wiser all the time - I read just today that there has been a lot of focus on whether stress increases the risk of dementia. There's not actually any immediate correlation.”

She is linking that our way of living, how we do things, and what we consume has something to do with this.

“There is some evidence that a single glass of red wine can actually be good. It's full of antioxidants, but of course follow the recommendations, because too much alcohol increases the risk not only of dementia but also of cancer. Then it's about smoking. We must avoid that.”

Moreover, Maria is linking dementia as we get more and more isolated. As a result, then we do not have all the good moments which are in a relationship crucial. We should have healthy and near relationships. We should have friends all our lives and have a purpose in our lives. Furthermore, we should speak with people and learn from people. This is also something we can link to the case from Germany with an investigation of brains. They have been able to live a fulfilling life and have a purpose. So, then they lived longer, and the dementia was not so widespread.

“We know that people who have good close relationships - there's a huge research project in Harvard, which has been running since the thirties - that can actually demonstrate that good close relationships protect. If we have that and focus on it, we grow old and we stay healthy throughout our lives. They protect against a lot of factors, so in many ways, that's one of the things that's really important for people with dementia - to maintain the relationships and that we make sure that we maintain the relationships.”

“There are some medications that can help some forms of dementia by slowing down the progression of the disease to a certain level. We know that for it to have an effect, it has to be given in the early to moderate stages of the disease. If you start too late, it has no effect, and all medications have side effects too, so it's always necessary to balance.”

It is crucial for a person who suffers from dementia to start as soon as possible with cognitive training. Secondly, exercise is important as well. The exercise can also monitor what a person who suffers from dementia can still do. In Aarhus, they have created Dementia Corner where the person who suffers from dementia can come also with relatives to get courses where they can train, attend classes, etc.

“We can't stop or cure dementia. There are only preventive measures in relation to dementia. There's a lot of research going on, but it's such relatively new research that's in the dementia field, in the sense that it started in the seventies, so it's not, old research that we have in this area.”

When it comes to medicine it is possible to get some. However, Maria does not think this is the best solution. The reason is simple as this medicine usually slows people down and that is the last thing we need to do to a person who suffers from dementia.

“There's a lot of research into why dementia happens. We need to understand that. before we can develop a cure. In the USA, they found an exciting product however there were several experts who withdrew because they said the whole process around approval, simply couldn't vouch for so that news dropped very quickly.”

Now, let's move on to communication with a person who is diagnosed with dementia. When someone suffers from dementia, there can be latency. That means it takes just a little longer for this person’s response to find its way from the brain into a language center.?“One of the common things especially in Denmark is that we are afraid of being silent. So, if we have silence in a dialogue we start to take over.”?In that way, we are moving an initiative because the person must think and needs time for formulation. This means we are again pressuring them.

So, the advice for readers would be to give it time, it's important. Also, try to ask about the experience instead of factuality.

A person who suffers from dementia has a hard time filtering. We get billions of impressions all the time, and our brain is constantly filtering this for us, and that can be difficult when you have dementia.

“So, of course, we have to try in many ways to avoid people with dementia getting into stressful situations, which in itself is almost impossible because having such a life-altering illness is in itself mega stress.”

If you sit down in the middle of a communal room in a care home, where there are tables with food and staff talking or there are other relatives, then you are kind of discouraging to have a good conversation. The person’s?a life-altering?on is going to be disturbed. The reason is that the brain that has dementia is going to be drawn to where is the most noise or what is calling for their attention the most. Therefore, close the door and be in the conversation present. The most important thing is to create a calm space. Then you should also follow the initiative as those who have dementia always have a lot on their mind. Even when the language is a little damaged, listen and see what is being communicated. Tell, “I can see you are getting sad now” or “I can see you are getting happy when we look at this picture” referred to emotions and validation.

“The last piece of advice which I think is important is to pay attention to what you are bringing into the conversation when you come by. For example, I must come every Thursday because I promised it to my loved one who suffers from dementia. On the other hand, I'm tired and the whole day is terrible. However, I can pretend it is not and that everything is alright. - Just remember - We can't lie with our micro facial expressions and our body language.”?In that case, Maria is rather recommending to not go for a visit and come another time.

In Maria's eyes, the biggest challenges are that we still label people that are getting dementia and that is from Maria’s point of view totally wrong.

“We have also grown up and gone through a crisis, illness, and dementia does something different to us.”

Many times, we also think that in the latest stages they are gone mentally but they are also gone when it comes to their personalities so, in some kind of sense, they are dead to society. This is not a good point of view -we have to accept “yes” maybe they are not the same as they used to be but removing them and not talking about them is not right.

“Well, there is this general misconception that people with dementia are almost invisible in our society. It's a bit like death, we don't talk about it either, but it does exist.

I think they take up too little space. We have seen a movement around LGBT. It has become much more visible for example when you look at social media, same children and adults with Down syndrome have also become much more visible and have got such a valid role in society. I think the next group, should be people with dementia. We need to pull them forward. We need to give them a much, much louder voice. We need to give them jobs, we need to give talks, conferences. So, as a society, we need to do much more to change our narrative about having dementia because if we do that then we change the trajectory as well.”

During the interview, we asked if she has ever experienced situations when a person who suffers from dementia would get lost.

“Yes, many times. I have experienced that a person got lost it I was the manager of the dementia center, the special residence. None of those people at the time could navigate traffic. So yes, believe me, I have searched the roads, and we also once picked one person on the Sams? Ferry.”

The most important advice for relatives of dement is to keep the closeness.?“See it as an opportunity to get things to reset.”?Keep close to each other and respect and accept each other otherwise it will go the wrong direction and she has seen it multiple times. It is not possible to fix all the history so keep the closeness and possibility of having some good years.

“Also, something about people with dementia being tremendously good at being in the moment. Because that's the opportunity you have, and we could learn a lot from that, we're always moving forward.”

Create good experiences together. Final advice for people getting dementia and relatives:?“you should acknowledge that now you will learn about dementia, or you will live with dementia. Embrace the moment you will get.”

“Some of the things that are the most important - It's to keep seeing the value in the togetherness, be insistent that you have value to me as a human being, no matter how much you change. The rest of us are changing too.”

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Would you like to read more?

You can purchase Maria’s book “Nye vinkler p? demens”?here

The?Otiom ?offers a solution that allows people with dementia to move around freely, even to local shops or parks. When a person gets lost the alert from?Otiom ?device would notify a caregiver or a relative. This means more freedom and less fear for a person who has dementia as well as caregivers and relatives.

Written by: Angelika Benesova , marketing assistant at Otiom