Márta Bokonics-Kramlik is the head of the program Reminiscence in the Museum which aims to help people living with dementia. The program is a part of the Hungarian Open Air Museum where participants, with the help of educators and caregivers and surrounded by a historically authentic environment, try to reconnect with their past and increase their quality of life. The program Reminiscence in the Museum has won the third prize at the SozialMarie Award ceremony in May this year.
Can you in short describe your position within The Hungarian Open Air Museum and the Reminiscence in the Museum program?
I am working in the Learning Department where we cover all age groups. We do programs for kindergarten children, elementary school kids, teenagers, young adults, adults, and elderly people as well. We offer different kinds of programs. I am not only responsible for the Reminiscence in the Museum or, colloquially, the Dementia Program, but I also do many other things. Because of my university degree, I also work as a researcher, curator, and museologist. There is a lot of work, 24 hours a day is not enough, but I really enjoy it. Life is just too short to do something you do not enjoy.
The program Reminiscence in the Museum is one of the activities of The Hungarian Open Air Museum. Can you tell me something more about the Museum?
The Museum was founded in 1967 so it has quite a history. The Museum’s concept changed a lot over time. It started as a museum of architecture. We wanted to preserve buildings, the furniture that belongs to the buildings, and we wanted to create exhibitions of the buildings. Throughout the time, the concept changed and we became more of a social museum. The Museum is not just about people but for the people. We have quite a few programs of social responsibility in the field. One of the programs is the Reminiscence in the Museum. We have worked together with other museums that joined the Erasmus program where we were developing the Dementia Program. We had a previous connection with them. Some of these museums already had an experience of running this kind of program.
Since we are just museum workers – although we saw that we were doing something good – we did not have the official healthcare background for it. That is why we wanted to include in the Erasmus program the universities that do not research history or ethnography, but healthcare and well-being programs. From these universities, we included neurologists and psychologists who were monitoring the sessions that we did and evaluated them. The result was that this program can slow down the process of dementia.
When was the idea of the Dementia Program created?
Everything goes back to 2014. That is when our Museum joined up the team of other museums and healthcare university researchers in an Erasmus grant. We worked together on a three-year project and we aimed to create a program that is easily adaptable not just for museums but for whoever is taking care of people living with dementia. We created the Reminiscence Program which has elements that are very easily adaptable – they work not only in museums but are useable at home, in a care home, and in a cultural facility.
The main goal of creating this program was to provide a well-being program for people living with dementia and for those who take care of them, not just professional caretakers but informal caretakers as well, such as relatives, friends, or neighbors. We also wanted to raise awareness towards dementia, to highlight that it is a very big problem and that a large number of people are affected by it. Not just those who have it within the family, not just those who work with people living with dementia, but it affects the whole society.
Which institutions apart from yours participated in the program?
We finished working in 2017. There were several museums: Beamish Museum from Newcastle, Jamtli from Sweden, Maihaugen from Norway, and Den Gamle By from Denmark. The universities that cooperated were Newcastle University from the UK, Linné University from Sweden, and Aarhus University from Denmark.
Was the same program implemented in all these countries?
Yes. We are still in touch and they are still running the program. In the UK and Denmark, other museums also have programs for people living with dementia, not necessarily the method that we use. In Hungary for a long time, it was only our museum that had programs for people living with dementia, lately two other museums also offer special programs.
Does your program have some institutional support from, for example, the Ministry of Health or from the government?
We can say that we are supported by the government because the Museum is a state institution, currently we work under the Ministry of Culture and Innovation. We don’t have extra support specifically for this program. The Museum gets the funding from the government and the Museum decides what we use it for. We received support from the Erasmus grant. That is how we were able to start it. After that, in 2021, we cooperated with a sugar company. They were supporting us not just financially but also with disseminating the program. I am constantly seeking grants and prizes to apply to. That is how we try to keep it up. But the whole program – for every attendant, not just elderly people, but also caregivers who attend the program – is completely free. We do not charge anything. I could say that it is up to the Museum to keep it alive.
And on the European Union level, do you have some official recognition or support?
It would be great, but at the moment it is up to us to find and reach out to others and cooperate with them. The Dementia Social Council was established in 2023 to support the implementation of National Dementia Program, but sadly Hungary does not yet have an accepted national dementia strategy.
How many people work in your organization?
In the whole Museum there are more than one hundred and fifty people, those who work with the Dementia Program are four of us. We already had a collection of the Museum with most of the objects, we already had the buildings with interiors. We had it before we started the program so it was not something that we needed to invest in. These four people, including me, are employed full-time, so we do not have to be paid extra for doing the Program. It would be better if we had more people who could help out with the program. Apart from running reminiscence sessions in the Museum, we also travel out to a nearby hospital to run the program. If I am at the hospital, I cannot be here, so it would be better to have more people.
How many people participated so far in the Dementia Program?
In 2022 and 2023 altogether we reached approximately 350 people with sessions and consulting within the Reminiscence Program. However, I do not have a number of the people who attended the Alzheimer’s Day Program that we run in the Museum because people do not have to register. We usually work with small groups, which means that sometimes just two people are participating, for example, a couple. The other day an elder woman came with her daughter. Sometimes we work with bigger groups, but these are not big, maximum of five-six people living with dementia and two caregivers coming along from a nursing home.
So, it is not a huge number that we achieved through this program, but to take this program to more people, we are not only offering sessions here in the Museum but we also offer consultations and sessions for whoever is interested in it. Maybe they do not have the opportunity to travel or to physically move the patient to come to the Museum, so we can have a consultation and I can advise on how to do it in their own home or elsewhere.
For the session to be efficient, a large number of participants in the group is not appropriate because you need to concentrate and focus on individuals and their stories.
We want to give personal attention to everyone. With dementia, the shorter memory has challenges. Sometimes they keep repeating the same story in a loop. In the session we do not want to interrupt anybody, we want to give them time to share their stories. If they repeat their story, we want to be able to listen to it with full attention. We can only manage to do this with a small group.
Do new participants approach you or do you look for them? Do you have some standard way of finding new participants?
Mostly the new ones reach out to us. To spread the word, I tend to go out to Alzheimer cafés and promote that we have a free session if they want to attend. It is always a challenge to reach the individuals, so it is up to them if they want to come. As I mentioned before, at the Museum we also have Alzheimer’s Day every September because September is the international month for raising awareness of Alzheimer’s. On this day we do not only offer programs particularly for people living with dementia, but for every visitor, because the Museum is open to everyone. We just want people to meet with this problem, also they can know more about this program, and about how to help actively.
At the beginning of the session, how do you start? Do you have some questions that you ask the participants to get some overview? Do you have some form you begin with?
It is really important to know as much as possible about each participant. Before they come to the Museum, before the session, I contact the caregivers and ask a series of questions about the participants. Some of the questions are about how they spent their childhood, their youth, what did they for work, what were their hobbies. I also ask about the taboo topics, the topics to avoid, because we do not want to bring up negative memories. We only want to focus on triggering positive memories.
Also, I ask about the current physical and mental state of the participants. It is important to know whether they are visually impaired, hearing impaired, or struggling with movement. So I try to collect all this information before they come to the session. Based on this information, I can create a personal session for them. The sessions themselves usually take one and a half hours. It is very flexible. If we experience that they are getting tired, we do not stretch it to one and a half hours. It can finish in one hour. If they are having fun and not in a rush, we can do it for two or three hours as well. It is up to the group.
Is there any pattern in participants’ state and recovery? Are there similarities between different types of dementia? Or is each affected person strictly unique?
The pattern that works for everyone is that long-term memory can be more easily used. Whatever happened in their childhood and in their youth – they can recall it and they can easier remember it. But every patient is different. There are more than one hundred types of dementia that can be diagnosed at the moment. It differs from patient to patient. If two patients are diagnosed with Alzheimer’s, it does not mean that they will have the same condition and the same reaction. It depends on their previous life, the other illnesses they are dealing with, or the environment that they were used to live in and are currently living in. So, it differs from patient to patient.
However, the research and evaluations that we did showed that this program can particularly work for those who are in the early stages of dementia. It can be measured that it can slow down the illness. On the other side, it cannot be measured for those who are in the late stages. However, saying that it is not measurable does not mean that the program is not effective. People in the late stages are usually physically unable to move and travel. That is one of the reasons why we do not tend to work with them and why we mostly work with those who are in the early stages or somewhere in the middle.
I suppose that when you approach them in the early stages, you can prevent the worsening of the illness. What are the responses from the participants? Do they feel that their condition is improving? Do they give concrete feedback to you?
Most of them are not aware that they are ill and that they have dementia. They just live in the present and the present for them is sometimes the past for us. So we mostly get feedback from the caregivers. They can compare how they used to feel, how active they were, and how effectively could they express their emotions before the sessions and after attending the sessions. We can see that there is an improvement for them. Some people tend to come back frequently to our sessions and with them, I can sensate as well that the program is helping. But some of the people just attend once and continue with the session in the care home or their own home.
We do have the questionnaires for the caregivers that we hand out. One is from the point of view of the person living with dementia and the other one is from the point of view of the caregiver. We ask them whether they learned any new methods that they would like to continue working with, whether was it clear to them what their role was during the session, would they like to continue working with these kinds of methods. We also have the third questionnaire for ourselves, the session facilitators, because we want to look objectively at what we do. Whenever we finish the session, we fill out this two-page-long questionnaire for ourselves. Then we discuss it – was there anything that was an obstacle for the session, what would we do differently if this person comes back, what were the most successful elements of the session that could be applied to others. We use this to feedback ourselves.
The feedback that we get from the participants during the session is the smiles they give to us. We actually can experience how they open up. Most of the time when the new attendants come to the session, the surroundings are familiar because we work in an interior that is dated to their youth. Everything is kind of familiar, but still not. Sometimes when we start, they are a bit quieter and they just look around. They need to loosen up. But I think this would be the same for a group without dementia as well. In one and a half hours we can experience that they become more chit-chatty with each other and with us as well, they are getting more brave with using the tools or the objects we have there. They become more engaged throughout the program. But for others, it is none of a deal, sometimes the first minute they arrive they own the place and they are already fine with everything around them. It depends from person to person.
In the sessions, which type of method is the most efficient or the most common? You mentioned that you use objects, I suppose that you also use stories and some other methods.
Every person stores his or her memories differently. For some of us, the visuality is stronger than other senses, for others smelling, tasting, or motion can trigger the memory. So we try to include every sense into our sessions because we do not know which one would work for whom. We usually invite these people into a building that is set up for a special time period. For the elderly, we use the interior that is set up for the 50s and 60s. With younger people, we use the interior that is set up for the 80s. Just when they step in, they start to recognize things: ‘Oh, we had these things at home’ or ‘My grandpa used to have this.’ Or ‘I still have it,’ sometimes even if they do not have it in reality, but they do have it in their minds because they are reliving their past. Then we tell them to take a seat and we introduce each other.
In every meeting, we include a little drinking session in the program, which is very important because elderly people tend to get dehydrated very easily. It is important to be hydrated because your blood support has to work properly and enough oxygen has to come to your brain. Based on which season they are coming and what they used to like when they were young, we drink tea, typical Hungarian syrup, or something else. Drinking also gives a visuality because we use old types of bottles and cups that they used to have back in the day. It sparks up the other senses as well. Usually, it brings up a conversation naturally. They say ‘Oh, this used to be my favorite, I haven’t had it for a while’ or ‘Oh, I never liked it. This was the worst that I had in my childhood.’ From this, we can start a conversation with them.
We must try to avoid asking questions. They can feel like they are on the exam. We do not ask, for example, ‘Do you remember?’ or ‘What was the date of this or that?’ We do not ask the data about them because we do not want to frustrate them. We want to engage them in a conversation.
We always add singing and music to our sessions. We usually prepare five different songs that were very popular back in the day and we print out the lyrics with huge letters. In this way, it will not be a problem if they forget the lyrics. Usually, people remember the rhythm or the tune of the song, maybe the chorus, but they tend to forget the lines between the chorus. It can be frustrating if it is on the tip of their tongue but they cannot remember it. We try to lessen the frustration with printed-out lyrics. We sing or listen to music together. Sometimes we dance together. We prepare five songs, but sometimes they come up with new song suggestions that we have not prepared. That is not a problem since we have our smartphones and other tools to just search for it. The other time, we had a group of homeless elderly people with dementia. One of them loved Black Sabbath and Pink Floyd. We were not prepared for that, but we were flexible. Our sessions require flexibility.
Every time we add something to do with fine motor skills. We always do something with our hands. Sometimes we bake or craft together. We usually cook something because food is one of the topics that everyone can relate to. Everyone has some favorite food or a way to make something. This also triggers a lot of senses. Since we have an open-air museum, we try to use the rest of the Museum, not just one building and its interior but also the outer side of the building. We go out and do gardening together, or go for a stroll down the street. The buildings in the Museum look like they are forming a village. If we know that they have some specific memories that we can connect to some buildings, we include those buildings. One day there was a Roma person who has always been connected with a smithy and since we have a blacksmith workshop, we went there and he just lit up, he knew all the names of the equipment, and even corrected us on how to represent them properly.
Religion is quite important for the elderly people. We have churches and chapels in the Museum so we sometimes visit them. There is also a school building and a barber shop, it is really up to the group to choose what we will include in their program. But there are specific things that you can find in each and every program: the greeting, the singing, the fine motor skills, the eating, and we always create something that they can take with them, therefore for the next day, it would be easier to bring up the topic again.
In general, what is the profile of the participants? Are they stuck in the past or do they forget things?
If we can talk in general, which is hard, most of them are stuck in their past when they come to the sessions. They do not know that they have dementia. Those who come from the nursing homes and have been living there for three, six, or ten years, keep telling us ‘Oh, we came from home, from our family.’ And then we get the information that the husband has died fifteen years ago. But they still live in this world.
Would you say that dementia is caused by some traumatic experience and that a person does not want to face it and rather runs away?
No. It differs from each type of dementia. It is always the illness of the brain, the injury of the brain. This does not mean that every dementia is organic. We deal with secondary dementia as well, which is caused by a lot of alcohol consumption or drug consumption. We have people in their forties coming to us who already developed dementia. Dementia means that your brain cells die, and based on which part of the brain is damaged, you lose different skills and abilities. The common thing is that one part of the brain that is responsible for memory always gets damaged by all sorts of dementia. Some of the dementia is genetically inherited. For the other type of dementia, we still do not know why a person gets it. There is stuff that sits on the brain cells and takes away oxygen from it – that is how it kills the cells. There are so many kinds, but what is in common is that the brain is affected by it. There is no proof that people develop dementia because of trauma.
We did have to learn how to deal with the patients because not only positive memories can pop up from someone’s childhood or youth. Those who come to us are mainly in their seventies and eighties. They were young in the nighteenfifties and sixties, which was not a very great era in Hungary. A lot of families were struggling throughout this time. These memories do come up. Our job is to try to find positivity in it.
There is one patient who tends to come back. She has severe depression besides her dementia. Her father was beaten up during the communist era quite a lot and their fields and animals were taken away. She is struggling with this because, although she is happy to be here during the session, the idea pops into her mind which changes her mood. We need to find a way not to strengthen this idea because we know she loved her father. So we start the conversation about the father and the positive memories about him. It is very important to find the balance – if she is in a bad mood and starts to cry because the idea shows up, we cannot just say ‘Oh, here is a cake.’ That will not work for anyone.
Is dementia treated with medicines? Is it more efficient to approach people medically or psychologically?
Dementia is still quite a taboo in Hungary and it is very heavily stigmatized. To get a diagnosis, you need to go to a psychiatrist or neurologist. In the generation of elderly people, if they say that they are going to a psychiatrist, their peers might ask them whether they are dumb or crazy. Then people do not go to the doctor on time and that is why they discover the illness not in an early period but in a later phase. Some types use meds to treat it. For example, if a person has very narrow arteries and blood support is not good, then he or she can use meds for blood support. In this case, meds do not apply directly to dementia, but to the blood support which can help to slow down certain types of dementia. In some cases, a person living with dementia experiences struggles with sleeping. So doctors recommend using sleeping pills to help them. Again, this is not dealing with dementia, but with the consequences of dementia.
On the other side, talking during the sessions helps not only the patients but also the caregivers. We always tell the caregiver to attend the sessions as one of the participants. It has a good impact on them as well because they can experience that the person they are taking care of is not just someone who is lost in the present but that they can find themselves again, maybe in the past, but it is still finding themselves. They can be as they used to be before dementia appeared.
There was a study that researched how much time a nurse would spend with different patients. If a patient was gloomy or morose or sad in general, the nurses would not want to spend much time with them, because it brings us down if someone is sad. So they would just clean them, feed them, and leave the room. With other happy patients, the nurses were more willing to spend more time. They would ask them how they feel or comment on how beautiful the day is. It affects us how others in our environment react.
Why do long-term memory or early life experiences have such an influence on our identity? Is it because they are the first ones and constitute the core of our identity?
I have a metaphor for this that I like to use to explain how memory works. Imagine bookshelves. When you are little, you start to create your memory books and you are only able to reach the bottom shelves. You fill them up with your memory books. As you are growing, you can reach a higher shelf and fill it up. On the shelves, you store the memory books that have the data in them – on which day something happened, how many people were there, what time it happened, what were the names of the places, and so on. Simultaneously, you create memory books of your feelings – how much you enjoyed it, how something smelled, how tasty something was, and so on. You stack these two types of memories into two different bookcases. One bookcase is a simple one, wobbly, without all of the screws that you need, and it is not even hinged to the wall. That is where you store your data books. The other is a strong, walnut chest where you keep the memory books of your emotions.
When dementia hits both of these chests, what happens? Well, the wobbly one will wiggle a bit and the books from the very top will start to fall out. But the books that were put at the bottom will most likely stay in place. The books with data on the top shelves will start to fall out. They are connected to the short-term memory. Sometimes, they will just get wrinkled, sometimes the paper will get teared out, sometimes they will get mixed up, and sometimes you will not be able to recreate them and put them back as they were on the shelves. What happens when dementia hits the other bookcase? Nothing much. It might be a bit wobbly, but the books will most likely stay in their place. That is what we are trying to work with during our sessions – to make them have their most recent memory books filled with emotionally positive memories and put them on the shelves. We also want to recreate the ones on the bottom and put them on the higher shelves as well. It does not matter if it falls out again. The ones that have the emotions and feelings will stay in place. For some, it will provide a good feeling for just a couple of hours, for some for months or years.
You answered this question in a way, but are there cases of full recovery?
Sadly, no.
Is it even possible?
No, based on what we know about dementia right now, it is impossible to recover fully. In most cases, people living with dementia are elderly people whose body activity necessarily declines. We can slow down the decline.
In the end, what does the SozialMarie Award mean to you and what are the plans for the near and distant future in your work?
It was a huge surprise and a big honor. There were so many other great projects that applied for the Prize. It also means a big opportunity to promote and disseminate the Program. This gave us a big help with it. Within our country and also internationally, more and more people are discovering that the Program exists and that they can use it. It helps us to reach out to more people with our Program and raise awareness towards dementia. Also, it is a great opportunity to learn about other great projects. We already got in contact with others from SozialMarie and others throughout SozialMarie to work together.
About the plans, there was a university student who reached out to us because her grandma is dealing with dementia. She is learning art at the university and she wanted to brainstorm about how we could combine her studies and help people with dementia. We came up with the idea that maybe she could design a coloring book that has the objects in it. It could include fine motor skills and looking at the objects and then sparking a conversation between the one who is coloring and the one who is sitting next to them. We also got in contact with one of the nominees – Appy, a Hungarian hub. We got in contact with one of the members of Appy, the Északi Támpont Egyesület, who are creating films and they wish to make a film about the methods that we use. We are still discussing about the type of the film.
The plan that we already had in mind when we were fantasizing about winning the Prize was about creating loan memory boxes that could be rented from the Museum. Many people are not able to travel to our Museum. For them, we could provide the objects of the Museum so they could rent them out. Not just the objects, but activity ideas, conversation ideas, and suggestions on how to create an environment around yourself to do a session like the ones we do in the Museum. I want to create different memory boxes on different topics and different objects and multiply them. So more people could have acces to them. Also, I want to update or change the interior that we use. It is set for the 50s, 60s and 80s. We are missing the one for the 70s. Those people who have memories from the 50s and 60s are getting into the stage of life when they will not be able to come to the Museum anymore. So we should create an interior in the Museum for the 70s.
