© Ruth Mateus-Berr
Ruth Mateus-Berr is an artist, artist-researcher and Professor for Art and Design Education at the University of Applied Arts Vienna. Ruth has published several articles and books contributing to the fields of art and design, arts and design-based research, inter-/transdisciplinarity, health and education. Since 2016, she has been working on dementia research in the field of art and has conducted the artistic research projects Dementia Arts Society (FWF AR-366) and demedarts (FWF AR-609) funded by the Austrian Science Fund (FWF).
Ruth Anderwald (RA) — Thank you, dear Ruth. Let’s get straight to the heart of the matter: dementia means that a pathological process of change takes place in the brain, altering the ability to deal with inputs, be they sensory, cognitive or emotional. Over time, physical and mental capacities are gradually lost. As a result, impressions and experiences can no longer be processed in the usual way. This in turn impairs the making and finding of meaning, both for the individual in question and for those around them. How do you see these issues? For you, what does it mean for art and social design to operate in such a context?
Ruth Mateus-Berr (RMB) — Art gives access to subject matter that is not easily accessible. That’s the first point. Meaning that art offers inroads that are not so easily achieved by other methods. The second thing is what art achieves in the field of disability. Rosi Braidotti stresses that otherness or disability is in fact something we can and should view in positive terms. In this light, a so-called disability can be seen as a huge resource, prompting a discussion of terminology that focusses more on abilities. Even if I concentrate on the illness itself, I can still see a positive benefit – there is good scientific literature on this – for example by taking highly creative approaches that return us to the openness of a child. As children, we are relatively uninhibited. We have an idea, we are creative, we try something out, and we are less anxious than adults. The advantage is that people with dementia, too, can once again deal very freely with things, ranging all the way to sexuality. People with dementia sometimes mix up their partners; situations arise, for example, where a family member, the wife of someone with dementia, wants to pick up her husband and finds him smooching with another woman, a woman with dementia. This is very hurtful for family members, of course. Conversely, this example shows the radicality of the idea of freedom in such situations. People with advanced dementia no longer adhere to the social rules we have learnt to obey as adults. In this sense, they are highly creative. They make mental links we would not necessarily make, the kind most likely to be made by artists, who are also capable of such a free approach. Like the fairy tale of Little Red Riding Hood, that actually features only Little Red Riding Hood, suddenly being expanded to include The Wolf and the Seven Young Goats. But many other people who do not have such an affinity for art find this problematic, because they are not able to associate so freely, or so boldly, what I would call being able to think in a way that is slightly “de-ranged,” in the most positive meaning of the word.
The senses are essential because senses make meaning. Accordingly, people with dementia can no longer attribute meaning to things the way they did before. Our senses are altered by dementia. In the case of Alzheimer’s, for example, the first thing to go is the sense of smell. Of course, there are other reasons for such olfactory decline, such as ageing or heavy smoking. We know that the sense of smell directly effects the limbic system and thus evokes many emotions, both positive and negative, that we are unable to consciously control. In a recent radio programme, the psychoanalyst Hans-Otto Thomashoff said that because we always respond emotionally – which is an epigenetic fact – it would be good if we then switched on our brains, rather than remaining purely emotional. But people with dementia can no longer do this. So, they are not doing hurtful things deliberately, they are just living in a world of their own.
Leonhard Grond (LG) — You mention the freedom of dementia patients, and I’d be interested in how this communicates itself to their entourage? Do meaning and access to meaning change for these people, too, be it their carers or family members?
RMB — I would just like to mention something about validation, which is important in terms of political correctness, but also because people with dementia – especially in the early stages, but also later – continue to be aware of everything. They notice that something is amiss but they don’t want to be associated with illness. Validation is a special language one learns in order to deal with people with dementia. In this language, rather than saying “dementia patient” or “dementia sufferer,” you talk about “people with dementia” and “people without dementia”.
RA+LG — Ah, thank you.
RMB — But to come back to your question: Unfortunately, in most cases there is no such change, because it is incredibly difficult for family members to deal with. Which is why I mentioned the example of the women coming to visit her husband and finding him smooching with another woman. The wife, who plays the caring role, despairs because her husband is unwell, because she has to live apart from him, and because their relationship is completely altered. It is said that people caring for someone who is severely ill go through the same crisis. That they are just as badly impacted as the ill person. The other person is more seriously affected in physical terms, but their entourage is in a similar state of emergency. This kind of despair is also the reason why many people initially refuse to accept the diagnosis and the extent of the problem.
Also, there are some things you should not ask someone with dementia, like “Can you remember?” or “Do you remember?” Dealing with family members I have observed that they often believe they can provide a reason for the dementia – something that also happens with other ailments: “You’re ill, and it’s no wonder considering how much you’ve smoked.” With many illnesses, there may indeed be a predisposition due to behavioural factors, but not with all illnesses. There are people who are slim and do loads of sport and who then slip one or more discs. But people are still quick to say: “It’s your fault!” The same thing happens with dementia, family members have the feeling that “he didn’t take care, he should have done more crossword puzzles”. I had a friend, who sadly died of a brain tumour, and she was always arguing with her boyfriend, saying he should study more and do crosswords, because she thought he was becoming too forgetful. How do we humans deal with each other in the case of an illness, in cases of change? We often don’t know why people react the way they do. Another example: the wife of a dear friend of mine suddenly became very strange and wanted to split up with him, and he didn’t understand why. It was terrible, the separation, with a child and a house. My friend didn’t understand. A few months later, he got a call from the hospital asking him to come quickly, his ex-wife had been diagnosed with a brain tumour. You can look at this story in terms of what they must all have gone through, including the child, during the separation. But there is another way of looking at it: we humans are always so quick to judge. “Maybe she’s got a boyfriend.” Or: “That’s crazy.” Or: “She wants to do her own thing.” Or: “Midlife crisis.” We never think there might be a reason we cannot yet know about.
In cases of dementia, blame is often apportioned like this, perhaps also due to the desperation of family members, because they are thinking: “What do I do now? I can’t let him live alone any more because he forgets to switch off the gas when he cooks, and he leaves the water running.” Or: “How do I deal with this? I have a job, how am I supposed to do all of this as well?” There are many cases where the carers – children and other family members – start to fear for their existence, often rightly.
The whole situation is very desperate, not least because a loved one suddenly changes. Maybe they become aggressive, turn against you, may no longer recognize you. At a certain stage of dementia – I’m not an expert, I’m speaking as an artist on the basis of my engagement with the issue – one can also have delusional episodes. And then imagine, you’ve just had such an episode when your son comes to visit, and he becomes the waiter from your hallucination who brought you the wrong soup. Many people lack this information because our society knows so little about this illness – an illness that was the greatest pandemic, before corona. (1)
RA — But is it really just a lack of knowledge, or is it also a fundamental lack of interest in dealing with the margins of life? Our concentration is strongly focused on health and fitness, as you have already mentioned. As a society, do we lack an interest in illness or the outer edges of life?
RMB — I’m involved in a project with St. Annas Children Research Institute, where we recently discussed ways of dealing with such difficult subjects. I said I thought we should create a new word; we always talk about “life” whereas in fact, even as children, as soon as we’re born, we’re constantly moving closer to death; ageing is not the sole factor here, of course, but it does play a part. And I thought maybe it would be better, in German, to use the word “Lebod,” taking three letters from the word “Leben” (life) and two from the word “Tod” (death), as this would be a far more realistic approach. Not least in the sense of a Memento mori: “I know I am going to die, how do I deal with others?” Zygmunt Bauman says the same thing: “Ultimately, it will be a matter of how we treat each other” (Community. Seeking Safety in an Insecure World). And beyond that, it will be about finding a different form of interaction, dealing more consciously with one another. Unlike this hasty blaming, which must of course always be understood in context, because it is motivated by extraordinary existential anxieties. Many people fear illness and death because we are so very attached to life. But the stronger the cult of youth becomes, the stronger these fears will become. No wrinkles, people don’t want to get old, illnesses are never mentioned. And in this way, we exclude death and illness from our lives, for sure.
I think that for those of us who have worked professionally and artistically with people with dementia, the situation is different. Personally, for example, I almost achieve a flow state while working with them. They give a huge sense of calm because they demand a presence one doesn’t usually have. There is only you – now, here. This presence in the moment is something that can be comforting for family members when they have the feeling their own mother or father no longer remembers who they are. People with dementia may no longer know that you are their son or daughter, but they do notice your presence, they sense that you are there with them. They register these feelings, and that is crucial. I spoke with our project partners about the idea that people with burnout should be brought together with people with dementia as a form of therapy, because working with them offers a quality of life that is just incredible.
RA — How does this change existence? You’ve already mentioned this: how does the present change? From what you’re saying, it sounds to me – please correct me if I’m wrong – that the present has huge potential. It is not only a reminder of what I have planned to do, but as a person with dementia it is the only space where I can really be –
RMB — and where I, as a person without dementia, never am. I never have this degree of presence. Think of our sense of time. We’re looking at our phones. In a restaurant, you can see couples sitting side by side, each immersed in a phone. They don’t look at each other and they don’t sense each other’s presence. A person with dementia senses when you look at them, when you are fully there with them in your thoughts and feelings. In this way, it is possible to give them a considerable sense of life and importance. With them, this kind of presence can be learned and practiced.
RA — So it is also a form of practice: being with people with dementia calls for a specific practice.
RMB — I would recommend it to anyone who thinks things are going badly for them, because I must say that visiting the House of Compassion in Vienna’s 16th District, with whom we cooperate, going there, changes something in me. When you walk inside – there are not only people with dementia there, but also people in vegetative states, multiple sclerosis, and many other ailments – you notice immediately how well things are going for you. And you immediately become very modest and respectful. You may always be modest and respectful, but when you are there, you see the work done by the carers and, even in our self-obsessed times, you quickly forget your “ego”.
As an artist, I often work with design-based approaches. In the field of social design, they are especially important because they are always geared towards empathy and towards the other, which is not the default setting for art. Art may deal with socio-political issues, but whether it actually works – whether someone looks at a given exhibit, whether it does something, whether it makes an impact on the viewer – is by no means certain. With my design-based approach, I try to ask: “What does this mean now? What does it allow me to do for others? What meaning can I create for others via my own artistic production?” This is not a pure design approach, since I grant myself the full freedom of artistic development, not knowing where it will lead, but at the same time I have the feeling that it’s also about why I’m on this planet, and that I must give meaning to that. L’art pour l’art is not enough for me, instead I would say: L’art pour le sens.
LG — Our research project foregrounds the question of narration. You spoke before about how a person with dementia is in the present, whereas we are stretched between past and future. Most stories function between past and future, explaining the links between what we have experienced and what we wish to experience. Our shared narratives work in a similar way, situating us within a cultural context. People living with dementia are no longer able to continue their story in this way, because they are in the present. Would I be right to say that people with dementia no longer have this ability to think ahead, to carry on narrating themselves?
RMB — Perhaps people with dementia can write the future. Such people have a huge need for movement. I was in De Hogeweyk, a facility in the Netherlands that we visited with the team. It was the world’s first dementia village. They completely rebuilt a conventional old people’s home. The director who commissioned the conversion said at the time that he divided it into so-called “sinus milieus”: people from the city, people from the countryside, highly educated people, people with more rudimentary education, and ethnic groups that have special enclaves in the Netherlands, like the Indonesians. There are specifically designed houses and between the buildings there are small gardens or parks designed for these specific groups. If you live in the urban house, for example, you have a tree-lined path with benches and an outdoor chess set. If you grew up in a rural setting, you have a wild garden where you and your visitors can plant and harvest. The staff don’t wear uniforms, the idea being that of a residential community. The key is that no more than five people live together. Although this approach has been much criticized, many other projects of this kind in Europe and around the world have failed because they thought it would work with more people. Almost no one there is bedridden, but everyone has not much longer too live. In spite of being in this very difficult phase, they have a good time. That’s the secret I find so interesting. The whole thing is set up like this: you have a huge opera house, you have a park, you have a travel agent, where you can actually book things – I think they have fifty offers to choose from, that can be booked by residents and their friends and relatives. The opera/theatre is very popular. There’s a restaurant, too, and a pub, and a shop.
Let me give you an idea of how the director received us: at nine thirty in the morning, he met us in the restaurant and said: “Would you like something to drink? We have coffee, tea, a glass of wine, whisky – what can I get you?” We were surprised: “Whisky so early in the morning?” To which he replied: “What do you mean? What counts here is the person! If you want whiskey now, you can have it.” His point was that you won’t be judged on the basis of your needs. That’s crucial to the way people living there are treated, and he wanted us to understand that.
RA — In our work we deal on a different level with how to come through crisis-like situations, or situations of change more generally, in ways that are positive, with increased creative energy. One option, as mentioned, is the making of meaning via the narrative one has and develops about oneself and one’s community. Another is the meaning that develops via action in a crisis. What you have helped us to understand is that relatives of people with dementia must also find new forms of action for themselves and their entourage. This tells us a great deal about what social design might mean in such a context, and about the links between emotion and judgement, as Sara Ahmed writes: If I feel bad about something, then I judge that thing accordingly. If I feel overwhelmed or scared, then I judge the person I am confronted with accordingly.
RMB — On this subject, the psychoanalyst Thomashoff has an interesting hypothesis. Although I’m starting work tomorrow with an epigeneticist who says his idea is hard to prove. Nonetheless, Thomashoff claims to be able to prove – I think via brainwaves – that our reactions are primarily emotional. In a conflict, we are always told to stick to the facts, which is impossible because a conflict is always personal. But this personal conflict may consist in something from one’s own family that is being transferred or projected into the work situation.
I recently studied the refugee movement and then also Black Lives Matter with regard to projections and why such projections exist. In a word, projections are attempts to push one’s own fear away, in order to feel safe. It’s actually a type of survival strategy. Perhaps listening to people helps. Which brings us back to narration – if I give someone the possibility to express themselves.
We founded the collective Politics of Fear (https://pofcollective.wordpress.com/), in 2015, and we were supposed to organize university courses for people in refugee homes. Many people took part, especially students, even though that wasn’t planned. It was about fear. Originally, I wanted to start with women’s fear in public places. Suddenly this was a major topic among students, at least at a conference in Belgium I attended at the time. The University of Applied Arts did not want us to deal with this in the Social Design Department. “No, that’s not possible!” Then Cologne happened [on New Year’s Eve 2015-2016, hundreds of women were sexually assaulted in public by groups of young migrant men in Cologne and other German cities], and it became even more impossible. But I think it’s problematic to make fear a taboo. In political terms it prompts different voting patterns in people because they are not given the possibility to speak and give their narrative. We did an action in the Augartenpark for TBA21. We erected a wire fence and broke through it with folding tables and benches. The motto was: “We give you fruits for thoughts. Tell us about your fears!” We attached these phrases to the fence and spoke about them with the people who came. We tried to make it slightly humorous, but to keep things very serious. The important thing was the attitude: we are going to listen to you.
LG — The creation of narratives is a very important topic. We spoke to Shifra Sagy, whose PhD was supervised by Aaron Antonovsky, who in turn worked on salutogenesis. Shifra has now retired and is living in Be’er Scheva. She works on collective narratives and on modes of interaction between the narratives of conflicting groups. In this context, it is interesting for us to talk about the sense of coherence as part of salutogenesis. The sense of coherence has three components: comprehensibility, manageability and meaningfulness. These three factors constantly interact. Whether a person has a good sense of coherence depends on how well the three factors are developed and how well they work. We wanted to ask you how you think this might be understood in the field of dementia, what comprehensibility, manageability and meaningfulness mean here.
RMB — How that is interpreted and experienced is probably highly personal. If you fall ill or someone close to you falls ill, then you’ll be thrown off balance. You don’t understand why this has happened to you or to your loved one. In this initial absence of understanding, it is impossible to deal with the situation or to give it meaning. Meaning comes when I try harder to relate to this suddenly altered reality. If I can think out loud with you: What happens is that at such moments, I completely isolate myself and withdraw to my ego, to my self: “I’m all alone, I’m so unfortunate, because this is only happening to me. Why is it happening to me?” – etcetera, etcetera. But if I can relate to the world – and this is an anthropological approach – then I see things in a different context: “Maybe I don’t understand it yet, but one day I will understand it, or arrive at an interpretation.” It depends on a person’s mindset. For example, whether they are religious or not, and how they construct their world, results in different meanings. Scientific studies have shown that people with a religious faith recover better from serious illnesses than atheists. There is a real difference in how individual people deal with the situation. I would say the same applies to dementia as to any other illness.
People with dementia are quick to withdraw from society, but the aim should be to integrate them. In Brazil, when I visited other people with my family, it was perfectly normal to see people with impaired health being looked after at home. I always found it impressive how normal it was for such people to be integrated into the family, and the way visitors were always taken to meet this person first of all, because it makes a change for them to see someone new. That always impressed me during such visits. This might also be attributed to poverty, as many people in Brazil cannot afford to have their parents or family members with impairments looked after. But I was very impressed by the way they took on the responsibility. This may not be the case everywhere, and perhaps not everyone deals as lovingly with their relatives, but for me it was an incredibly positive experience.
RA — This social stigma is a major problem for people dealing with cases of dementia. But how can empathy help? Or is there such a thing as too much empathy?
RMB — I’d say over-mothering is probably not good for anyone. Too much empathy is when it deprives someone of their autonomy. But it is also understandable, because it has to do with fears. For people with dementia, it is important that they retain a degree of autonomy.
My husband trained as a doctor and worked a lot with the late Alexander Friedmann, who he says was a fantastic psychiatrist. He accompanied my husband during his work as an emergency doctor and then told him that one must always engage with the other person’s system of delusions. Meaning it’s not always a matter of contradicting someone. I’m applying this now to the situation with dementia, but it can be applied to many things. It’s not about telling someone: “That’s not true.” This can also happen with people who do not have dementia, but who are very old, for example. Any old person arriving in hospital will be confused due to the unfamiliar surroundings. This can even happen to a young person. So, the question, which I have also faced, is how to react when someone perceives and experiences reality in a completely different way.
What I noticed in this context is that people begin to hallucinate their father or mother a short time before they die. At this moment, telling this person “No, they’re not here anymore,” is pointless. But this is exactly what someone once asked me, and I said: “I don’t know how to react when you ask me that question.” I was afraid she’d be disappointed if I told her: “Your mother won’t come because she can’t come any more.” It’s difficult, because to enter into the dying person’s system, I’d have had to say: “Your mother’s not dead, she’ll come.” Another option would have been: “Your mother has died.” In both cases, it’s very, very difficult. I wasn’t able to offer the dying woman a solution for this complex situation. It’s something everyone has to decide for themselves, if and when they find themselves in such a situation.
RA — On a different subject: in connection with dizziness, we also focus on the inner ear. The inner ear is our vestibular organ. It helps us to sense gravity and stay upright. It is the seat of our sense of spatial orientation, as well as our faculty of hearing. A well-trained vestibular organ not only helps us to orient ourselves in space, but can also protect us from anxiety disorders and enhance our memory. There are physiological links between remembering, forgetting, fear, and balance. Speaking of dementia and memory: we have an Israeli friend who cared for his parents and whose mother, who was originally from Brno, also had dementia. And she suddenly started remembering things her family knew nothing about. In your experience, is this a typical phenomenon?
RMB — I didn’t know this, but maybe these things are something like family secrets that pop up because the brain has lost its protective function, stopped its protective filtering of consciousness, that ensures things are not mentioned. I think there are things our parents’ generation lived through that they were unable to talk about. The most authentic communication seems to have taken place between our grandparents’ generation and ours. My mother told me something just once in her life – just this one single time – and it must have been so terrible. She was around fourteen, she was in Maribor, and besides being assigned to dig out bodies and so on after raids, she experienced worse. I don’t know exactly who it was, perhaps the Ustaša who collaborated with the Nazis? In any case, they herded all of the women together on the main square in the centre of town, and they raped a woman to death in front of them, and told them that if they resisted or protested, then the same would happen to them. These are such traumatic stories. I know many things from my grandmother, who jumped from the train during her deportation. She managed to escape. She told me many stories. I realized that my parents are so traumatized. Which is understandable, if one has been made to watch something like that. My mother told me the story deliberately, because I was very involved with working on the Nazi period at the time. As a grown woman, she thought I would be able to deal with her entrusting her story to me, just this one time. But maybe she didn’t want to talk about it so often? I can imagine that dementia might bring down such barriers. I can also imagine that if your friend were to look into his mother’s memories, and found them to be true, that they were previously guarded by the barrier of taboo: “I can’t expect the boy to be able to deal with this.”
LG — Once, when he was visiting, he showed us a film of his mother on his phone. It was very striking.
RMB — I haven’t heard of this before, but I find it interesting. People with dementia also have moments when they are quite clear-headed. This has always interested me, and I never ask to be told what stage of dementia the people I work with are at. I always said to myself that I’d like to find out by artistic means. And that’s when I noticed there were some people who would suddenly have such moments of clarity. One wonderful experience in my work was with a woman I always said should be teaching laughter yoga. She was amazing, always so stylishly dressed, and always laughing, finding everything funny. She was at an advanced stage of dementia, meaning she could no longer speak in sentences. She could only laugh. I did workshops with her, never more than one hour – that was the maximum, longer wasn’t possible. After one of these workshops, she started talking in complete sentences again. The carers were very impressed. Can you imagine that, working with someone and opening up fully to their presence, physically, mentally, with eye contact, without reservations, without fear? Simply being present, because one is not affected? I often had the feeling that it was a meeting of minds. I was often aware of background details through the carers, and I arranged the workshops accordingly. One example was workshops where the participants could combine different things in a collage. But I gave the men and the women different materials. For the men I added a few pin-up girls, and for the women a few dashing men of their time. The women really enjoyed it, giggling about these men. It was great! A lot happened. That was the workshop where the laughing woman began to talk. The men’s reaction was interesting; they didn’t find it amusing at all, more or less ignoring the pin-ups. They were embarrassed. On of them said: “No, there’s only my wife, she’s the most important.” But there were also memories that came to the surface, it was very interesting.
In the course of our research work, I got to know a very nice deaconess who spends a lot of time working with people with dementia. She said: “What you really get is this sense that someone is there. This is communicated and then you have it too, this sense of pleasure, this sensing of all manner of things.” This is passes from one person to the other. I would go as far as to ask: “Might real love be nothing other than presence?”
RA — Love as “being there” for someone else.
RMB — It may be that it happens just for this one hour. When relatives feel bad, I tell them: “It’s already great if you manage it for ten minutes, if you’re fully there for this person, if you look at them and smile at them.” People with dementia sometimes develop “nursing home syndrome”, constantly rocking back and forth while staring into some kind of world in front of them. I’ve experienced how differently facilities can be run. There are places where people really are treated as equals. For example in De Hogeweyk, where people can say: “I’m going to the pub for a beer now”, or: “I’m going to the opera”, and: “I can do all this.” It’s a self-contained little world, designed to protect them, because otherwise they might walk out into the road and get run over. On the other hand, there are homes where people are more or less left to their own devices, purely in terms of how the facilities are designed. The tables are so far apart that you can’t even begin to talk to the person on the other side. There you really do find people sitting on the floor stroking dementia dolls. This gives me a feeling of neglect, as I know it from long ago. At the age of eleven, I visited homes for severely handicapped children where I was horrified to see how these children were left to their own devices. I think it’s already a lot to give a person in this state dignity and respect. De Hogeweyk is heavily criticized by people who think people with dementia should be much more integrated into society, brought into our homes and neighbourhoods. And in principle, I think that’s a fine idea. But people who advocate this and fight for it often don’t actually live by it, at least not in some cases I know. One shouldn’t forget the tremendous demands on the carers. I have known both women and men who gave up their professions because they suddenly had relatives who needed care. There are crash courses for this, one of which I was once permitted to attend. And I thought to myself: “Goodness me, as a care-giving relative, you never have a single moment for yourself.”
RA+LG — Does social design offer options for creating a more inclusive way of life?
I’m involved in a research project in Switzerland which found that carers often simply need easy-access support. That gives them the feeling they could just go for a walk for an hour, for example, or go with their partner to a dance event for people with dementia, but an event where they might also have space for themselves. Perhaps the two lives should not be separated, designed instead as “two dancefloors”.
Concerning inclusion and school, for example, people say all children with all types of impairment should be integrated into every class. There are different opinions and views on this. Children with serious handicaps are then taken out of a special needs school, where there was a swimming pool with a crane and where they could be better taken care of. A few years ago, Die Zeit newspaper reported that a girl with brittle-bone disease had to wait until four in the afternoon for someone who could lift her onto the toilet. Someone with autism can probably be coped with, especially if people campaign for it, people like Martha Nussbaum, who is affected herself through her child. Conversely, however, there are classrooms situations where it becomes totally impossible to communicate anything in a normal manner. I think it can never be a case of “this is right, this is wrong”. In a recent interview I said: “I would like to walk on a chess board without seeing black and white, but rather with the full range of colours in life.” For me it’s very important to get the message across that it’s not a matter of black and white, that it’s not always about “there’s only this solution or only that solution”. For people with dementia, too, there is a different solution every day, possibly even in terms of home design. I took a course at the Royal Institute for Architecture in London where they taught us that the design of facilities needs to be individually adjustable. We already know many things. We know you need a 30-percent difference in illumination intensity. You have to establish specific centres if you want someone to live at home for a long time. You can say: “I’ll make their bedroom a centre with a carpet and a sofa.” Then you know that the person will sit there. But it’s possible that in two or three or four days, this same person will need something different. In the field of social design, there is also the question: “What do we humans need at all?”
I think we’re still far removed from designing our surroundings in a way that genuinely facilitates inclusion. I once met a handicapped university colleague in the street and asked what he was doing there, whether he lived nearby. No, he replied, he lived in a different district, far away, but that this was the only bank he could use. We are far from inclusive design – in Austria anyway, but probably in all countries. I was once visited by the EU disability spokesman – who wishes to be referred to as such – the uncle of a student of mine. He came to me in a wheelchair and said he wanted to ask me – I was head of the university senate at the time – what we were doing about curricula on this issue. There are many countries where inclusion or disability is a required subject. Not in Austria.
After this, I held workshops with students during which we did a “disabled obstacle course”, in wheelchairs, and with various other limitations like: one hand tied up, drawing with the other hand, or drawing with their feet. To get a sense of what it feels like. The students even went back to their accommodation by wheelchair to see what that felt like: How do people look at me? How am I treated? Some people deprive you of your autonomy when they want to help you. And some people look down on you. That happens a lot. How you deal with these issues has to do with the way you were socialized. It’s exactly the same as with racism. How do you deal with it? Is it any kind of issue for you and your family? In terms of developmental psychology, this is established very early. On one level, wariness of strangers is natural: “These are my people and those are the others.” But this is supplemented by the attitudes one sees being acted out. In art education, which is one of my main responsibilities, I am always noticing how it is not so much about specific concepts. In reality, it’s about people’s attitudes. Children notice when their parents look scornful or roll their eyes or whisper about someone. A child would not have prejudices at the outset. Why should it? There’s no real need. The child might be unsettled if someone looked different, for example someone in a wheelchair. But that’s just a case of: “This is unfamiliar, not something I know.” It’s not malicious. The switch when it suddenly becomes about projections is strongly influenced by our attitudes. I think we need to work more on attitudes in society, or reflect as adults in order to generate more empathy.
RA — This is also a process of creating meaning. You have to see the meaning in something, otherwise you don’t strive for it.
RMB — Exactly. There’s a nice saying: “The teacher appears when the student is ready.” There is some truth is this, of course, because in certain situations certain people are unwilling and unable to hear certain things. And I say “unable” simply because maybe they’ve not yet had a bad experience, or because they’re totally incapable of putting themselves in someone else’s place. There is certainly scope for making a pedagogical impact here. Including in the sense of an “educational turn”. Why not?
RA — Do we have time left for one last question?
RMB — Yes, please!
RA — I’d like to talk about humour. Do you see any humour in the way people with dementia deal with themselves and their surroundings, but also on the part of those looking after people with dementia?
RMB — As far as I myself am concerned, absolutely, because I’m increasingly able to laugh at myself when I forget or don’t know something. Or because my husband is always saying that since I started working on this project he has the feeling that I leave books lying around and suddenly he’s going the same way. He has the feeling it’s contagious. At the outset, my research team – including many young people – had a huge number of fears, and at the end, after three years, they said for the first time that they were no longer afraid, that they now viewed dementia as an illness like any other. That is humour in the sense of “making fun of oneself” or “well, it’s bad, but it’s also not so bad to suddenly start forgetting things”.
LG — That happens in any case, with or without dementia.
RMB — Yes, it actually starts around 50, you can no longer remember certain names so well. I used to have an excellent memory, I could tell you: “In this book, published in this year, on such and such a page, you will find this quotation.” I can’t do that anymore, there are names I can’t remember. But I don't get upset about it, because from working closely with young people I’ve noticed it’s the same for them. Especially in the field of art, there are so many names. The young ones might focus on a few names in a seminar, which they then know better, but there are many other names they don’t know. The question is always: “Is that a bad thing or not?” To return to meaning and your earlier question, for me the question is always: “Why are we here?” and: “How do we leave this world?” It’s not like we can take anything with us when we go. Instead, the question is: “What meaningful impact can we make in this world?” That’s how I see it. And regarding humour: I had an unbelievably humorous mother – I think, I myself have never really had much humour. I experienced a great deal of humour from my husband. I’m someone who, strangely, always engages with issues that are incredibly difficult. Maybe it gives me the feeling of coming to terms with them better. That’s how I would interpret it myself. This seems to be my way of relieving my own fears and maybe it also helps me to become more humorous.
When I talk to relatives of people with dementia, I notice they are often unable to understand my approach. In their misery and despair, they cannot understand when someone says: “This is wonderful, I’m in synchronicity, in the here and now, when I work with them.” And I always have to make it clear: “But I’m only involved with this for one hour a week, sometimes only one hour in a month or a fortnight, and it’s not my mum or dad, for me this is a person I don’t know.” I think it’s very difficult for people. But the “laughter yoga woman” was a great example. She laughs about everything, because she finds everything funny. To return to Friedmann’s “delusional system”, she seems to be in a system where she finds everything hilarious. Unfortunately, we don’t have that much humour. But we can make fun of ourselves, by becoming more modest. In reality, humour and mischief is all about not taking oneself and life too seriously. Finally, this too is an awareness of a “Lebod”. I think that if you have a sense of humour, it gives you access to a “Lebod”. Because you know: “Well, what am I in this world anyway?” You don’t take yourself so seriously.
Around 55 million people worldwide are affected by dementia. By 2050 this figure is set to rise to as many as 139 million. See: https://www.who.int/news-room/fact-sheets/detail/dementia.