Podcast – Caring, Connecting, Changing

Voice Over:

The Dementia Researcher podcast, talking careers, research, conference highlights, and so much more.

Michelle Memran:

Hello and welcome everyone to the Dementia Researcher Podcast. Today we're going to be talking about care, creativity, and change in the field of dementia. Join us.

Hello again. I'm Michelle Memran. I'm a documentary filmmaker, a dementia advocate, and a Senior Atlantic Fellow for equity and brain health. Today I'm joined by two incredible colleagues and friends, both Senior Atlantic Fellows at the Global Brain Health Institute, otherwise known as GBHI, who have extensive experience as care partners and work in the field of dementia in different capacities. So, Alex Kornhuber is a photographer from Lima, Peru, and Sonata Mačiulskytė is a social scientist from Lithuania working in social work and policy. Welcome you both.

So, each of us collectively, the three of us has cared for or is currently caring for our mothers who are living with Alzheimer's and/or related dementias. So today we're going to reflect together on how these personal experiences have shaped our professional work and how our work has in turn helped us understand caregiving differently. It's about bringing personal stories into professional practise and asking together, how can lived experience truly transform dementia care and brain health worldwide? So, this is my favourite thing to talk about. So, before we dive in, let's start with short introductions. Could each of you just say a little bit about your work and how dementia first became personal for you? And then afterwards I'll share a little bit about my experience as well.

Alex, would you like to go first?

Alex Kornhuber:

Hello, my name is Alex Kornhuber. I am a professional photographer. I specialise in photo documentary, and I'm also caregiver to two wonderful women in my life, my mother who is experiencing Alzheimer's disease and my stepmother who has very advanced Parkinson's disease. I'm also a Senior Atlantic Fellow for equity in brain health. I did my fellowship at UCSF in San Francisco in 2018.

Michelle Memran:

Thank you, Alex. Sonata.

Dr Sonata Mačiulskytė:

Okay. My name is Sonata Mačiulskytė. Michelle introduced me. I'm from Lithuania. All my professional career is [inaudible 00:02:49] university. For 25 years already work in the field of ageing and policy because I'm coming from political sciences and entered social work, and I have been a carer for my late mother. She had Parkinson's disease. She was diagnosed in 2013, I guess now. So, it's already more than 10 years ago. And within 10, 11 months she started to hallucinate. So, it was not only Parkinson's disease. And I immediately became her completely caregiver since the first year of her journey through this narrative in [inaudible 00:03:37] diseases. She passed away a year ago and right before me coming to Atlantic Fellowship programme, which I spent in Trinity College, Dublin, and just recently graduated from there.

Michelle Memran:

Thank you both. And I'll just add that, so I'm also a care partner for my mother who is currently living with Alzheimer's. And I came into this work, and I came into documentary filmmaking actually after I interviewed my favourite playwright, Maria Irene Fornes who was, unknown to me at the time, was also living with Alzheimer's. And she had stopped writing and together we discovered that a camera could pick up where she had left off. And so, we collaborated for 10 years on a documentary film project. It was called The Rest I Make Up. And that led me to one of the fellows at the Global Brain Health Institute, Magda Kaczmarska, who brought me in to apply to the fellowship. And then while I was in the fellowship, I realised a couple years before that my mother was experiencing some cognitive changes. And so, while I've been in the fellowship this year at UCSF, I've been flying back and forth to be her care partner and to be a team in this journey.

So that's a little bit about my story. And so, something that unites us all is that we came into this not just as professionals but as care partners, came into this fellowship, the Atlantic Fellows as holding both of these things. And for some of us we're still moving through that and worked through that at the fellowship. And as for Sonata, it started earlier. So, let's start their and...

So, these journeys that we've been on often start with a moment of recognition when we realise that something is happening with someone we love, whether it's a parent or it's a spouse or it's a friend. I mean, there's many different iterations of care partnering. So, I'd like for us to begin with that first moment of recognition for Sonata and Alex, what was the first sign that made you realise something was changing with your mom? And because of our different fields, were you able to notice something was happening sooner? Or if you could just tell us a little bit about what that process was like for you. Sonata, do you want to start first?

Dr Sonata Mačiulskytė:

Okay. It was already quite long time ago, but for Parkinson's disease it's maybe different because usually Parkinson's begins with a symptom, but visual symptom and very obviously is tremor and shaking hand, leg, or whatever. So, I noticed that my mom started to have a very mild shake. I don't remember which side, but in hand. And because I was working in the field of ageing, I'm a social scientist, not a clinician. So, I really had no ideas that it can be something very specific to diagnose. I couldn't. But I used to notice people with some ageing diseases. And for me, the example here was Muhammad Ali. We all know, yes, he had Parkinson's disease. And actually, his prototype was for me that I saw that it can be, I diagnosed her a year before she really was diagnosed because I thought it might be Parkinson's.

And I started to ask her, "Mom, you need to go to the doctor." She was like 64, I think. I started to try to persuade her to convince her to go. She denied for around maybe half a year. Then she went to the local neurologist, and she got a wrong diagnosis. And it worsened even next six months that I just decided, no, I have to take her to University Hospital. And actually, immediately the next day when she was hospitalised, the next day I was the doctor who diagnosed her informally that she really has Parkinson's disease, and it was very, very beginning, but still actually she could be diagnosed a year before.

And the next step, maybe I'm too long, but the next step was the hallucinations, which were completely, I couldn't recognise them. She started to say that she sees something, she hears something, she thinks that it's real. And still we lived separate because in the beginning she really managed quite well herself to live alone. But when she ended up on the new year day of 2015 in a psychiatry court with a total breakthrough psychological, I don't know. She terrorised neighbours and police for maybe several months before this. So that was what I really missed. So, these were the signs which I recognised, and later on, which I couldn't.

Michelle Memran:

Thank you, Sonata. I'm going to follow up with some questions after that, but let's go to Alex and just talk a little bit about what were the signs or the moments of recognition that you had and were you able to pick up on them or was there some resistance?

Alex Kornhuber:

For me, it was really incredible because my mother's signs of decline came right after I came back from doing my fellowship at GBHI. I have absolutely no training in dementia or ageing before my fellowship at GBHI. And I came into GBHI because I was a photography teacher to student who later became a neurologist, who later became a staff at GBHI. And he came looking for me and he thought it would be a good idea that I applied. My ex-student is now my mentor. So, everything that I learned at my fellowship, I went back home, and I realised that my mother had severe word finding difficulties, but really strong ones like a police officer and the butcher and the door attendant, they all became men, just men. She could not call a fork, she just could not call a fork or a key, just simple things. She could not name them anymore.

And I took those as a sign that something was going on with the cognition. And I said that to my sister who, I mean, well, you don't know anything about dementia. And then all of a sudden you say, "Hey, listen. There's something going on with this person's cognition." And usually, you push back if you don't know anything. It's like, no, she's always been like that. She always... No, there's something absolutely very strong happening here. She does not recognise a fork. It's very simple things. It's everyday things. This is what I realised. And there was a lot of pushback from my sister, like, "No, no, my mom, she's always been like that. She always confused us." But this was bigger. It was everyday things, normal things that she could not name.

So, I said, "I just came back from some studies, and I think I have a little bit of knowledge about this. Let's go to a neurologist." So, we did, and she was diagnosed with Alzheimer's. And at the beginning it was all right. For people that don't know anything about this, at the beginning, you don't think much of it because your loved one continues to be the same, just with a little bit of fumbles here and there. So, it was a gradual journey into forgetting more and more things.

But that was my story. It was word finding difficulties that I found and later a lot of other things started happening, which were very difficult to deal with like violence, but I feel that I was prepared for this and I was able to prepare my sister and my sister's family for what was happening. And I think that is key to know, knowledge, to know what the disease entitles and what is going to happen. Although I think also everybody experiences dementia in a different way. Not two people experiencing Alzheimer's are the same, but it is, we know what some of the things that will happen. We know a little bit. It could happen that they will confuse you with somebody else. It could be that they become aggressive, it could be that they start forgetting. So, it's good to know what some of the things are that will happen to this person. So that was a little bit what happened to my mother and my family. That was the beginning.

Michelle Memran:

Thank you so much, Alex and Sonata. And I guess I'll add a little bit about my story with my mom in terms of, so in a different, when we're talking about if you've met one person living with dementia, you've met one person. So, I do co-creative work with people living with all types of neurocognitive change. And I was on my way to a shoot in Michigan and my mom and I had been having a harder time connecting over the last decade actually. I felt like there was not a lot of reciprocity. She wasn't able to ask questions about my life, and I took it very personally. And so, I wasn't going home a lot for various reasons. And I happened to be doing a shoot in Michigan, and I came home, and my mom lives with her partner here who also was going through some cognitive changes.

And so, all of a sudden, my mom started asking me questions about my life and she was really interested and really present. And then at one point, she came upstairs, and I was getting my gear together and she was helping me pack. Then she got into bed, and we were singing songs, and I was like, oh my God, this is what's happening. And then her boyfriend came up and we were all singing songs together and I was like, oh my God, this is what's happening. So, it was actually the reverse in some ways because all of a sudden, I just noticed this empathic concern increasing, I mean along with short-term memory loss and various other things, but there was noticing birds and clouds and the moon and all these, and poetry. She started reading Rilke. So, it was a real switch in personality.

But we went to a neurologist, and I had lots of not quite comfortable conversations about what I think my mom has and their inability to talk about that. So, it's been a three-year, it was a three-year process, but those were the first signs. So, we have a spectrum of things happening and each person is going to have some different way. So, I'm grateful that we're able to have this prismatic experience.

Alex Kornhuber:

Yes. Michelle, I think you touched on something very, very crucial, which is each experience is different and there is not just one way. It's not like one for everybody. How do you put that out there, the experience of dementia, how it affects everybody and how it is different for everybody? I think that you've touched on something. I think all of us, our experiences were so different. And I don't know, for some of the people that are listening to us, maybe they are caring for somebody, and their experience is different and it's different for everybody. And how do you carry that, right? How do you carry that? It's not one size fits all.

Michelle Memran:

And it's interesting too, I think, I mean we will move on to the next question, but I think it's also interesting if you've had experience with Lewy body dementia and now somebody has Alzheimer's, I mean those things are going to be different. And those are also, one person with Lewy body is going to be living in a different way and manifesting in a different way than another person with Lewy body. So, it's so nuanced, subtle, and personal and we want to hold space for everyone's experience and the experience of people living with these conditions. And there's so many perspectives.

So going on, thinking about the idea of caregiving, care partnering, not being just about tasks or coordination. So, it's about relationships and I think that's what we're all talking about here and with our moms, with our families. So how did caregiving reshape your relationship with your mother and also with yourself as you moved through this?

Dr Sonata Mačiulskytė:

Oh, I think that I had all the phases literal these 10 years. So, I'm coming from the culture and family maybe where we also had no very warm relationships among us. And we had some other events like my father's passing away a little bit more than 10 years ago before my mom was diagnosed. So, we had painful things which we never talked, and we kept distance. And I think that it was because of where we come from because we just closed in all our emotions in ourselves, including this family relationships. And I didn't have a very warm relationship with my mom because I was out of home. I let home at 17 and because of my problems and dynamics in my family, I also was not very, very frequent guest at my parents' home and just were a grown parents and children's relationships which are out of nest and just stay connected.

But I should say that for all these years actually, my mother was a person which was whatever our relationship, close or warm on [inaudible 00:20:11] were, she was the first one whom I called to share everything, my successes and my losses and everything, my fears. But we were not close. And actually, the beginning and when my mom started to hallucinate, we also, like you Michelle said, we also were distanced a lot because I initiated the conversation about our future and I just thought about what to do, how we'll live next. And I started to talk with her, and she was in a denial. She didn't want changes. And we were like, I'm also very, very, I have my opinion. So, we two strong women with stronger opinions, so we had to separate though.

And when you realise one day that it's not a choice, you become your parent under your, I don't know, protection or caring and you swap the roles. And that was for me, I couldn't accept it maybe for five years. For me it was totally because each time when I approached my mother asking for advice and she started to say, "Do what you think is best for you." And that's not the answer for a child. And I struggled that much. For me, the swapping the roles were very, very difficult. The bright side of this, after everything I experienced, I would say that this is a very cruel journey, but actually we became very close through the process and especially closer to the end of this journey. I'm so grateful I had my mom for 47 years of my life, and I will try to keep this message to myself further because otherwise maybe I wouldn't have this relationship if we had known this experience.

Michelle Memran:

Yeah. And had you not discovered or one of the things that comes up again and again is how crucial early diagnoses are. And so also how the relationship can grow if it's diagnosed earlier or maybe not. What do I know? But yeah, so, yeah.

Dr Sonata Mačiulskytė:

I wish I would have more mature conversations with her about the future and especially if she could really acknowledge and manage her condition, what she had no possibility to do this. Both of us hadn't.

Michelle Memran:

Did she have insights Sonata into what was happening to her?

Dr Sonata Mačiulskytė:

No, she never acknowledged that these... Her hallucinations were real for her. She in some critical points, when we really were also almost absolutely lost in our strong bond, she used to say, "Okay, I have Parkinson's." Like all answers to everything's going on. "I have Parkinson's." It's just excuse.

Michelle Memran:

Alex, can you share some of your experiences on this topic with your mom?

Alex Kornhuber:

Yeah, I relate a lot with what Sonata was saying. For me, early diagnosis was crucial and also knowledge of the disease. So that for me, I took advantage of that moment, especially the early moments where the diagnosis was given. And for me, there was this moment where I spent a lot of time with my mother. It was an amazing time where I plunged myself into the world of my mother. Like, "Let's do what you like." And my mother loves to walk, and we went for very long walks all over the city and we said, "Let's do the things that you love. Let's go to the hairdresser every day. Let's get your hair washed and dyed and cut every day. Let's go to church. Let's go to all the churches, not just one. I'll take you to the churches you've never been in the city. Let's walk through all the parks."

And I did not know my mom could walk so much. And I would hold her, I would hold her, and she had a very good grip on me. And we just had conversations. And this is the crucial part because I knew what was coming. I knew that deterioration would come. I knew that a time would come where I would not be able to share this lovely moments. So, I took this opportunity to tell her about my life, to tell her about who I am, to tell her about my journeys, my experiences in life. And she was just, things that I never told her, she was very surprised, and we laughed so much, and she was shocked about a lot of things about my life, right? No, I just took down all the barriers and I talked to her like she's not my mom, I'm just saying things about my life.

And this is really beautiful. I will cherish this moments. I will cherish the way she reacted to my crazy stories, my recklessness about life. But also, I started photographing her, of course, because I'm a photographer and my mother is used to being photographed by me. And I have this collection of pictures of her having hair washed. And I just let her guide me basically. It was a moment, and I think it's so important to know that it's just a moment and that it probably will go away. So, to seize the moment, size the moment, is that how you say it?

Because a time came after a few months where my mother started confusing me with my father, and in time, I became my father. So, my mother and I, we have a relationship through pictures because I'm a photographer. I've been a photographer all my adult life. And my mother's bedroom is full of pictures. Pictures from my childhood, pictures just from her life. And we've always used photography as a way of remembering. And we would go around the room and I would be like, "Oh, look at this picture. Tell me about it." And she will say, "Oh, this is when you were born. And we lived in such and such street."

And we went through all the pictures, and she would tell me, "Oh, this is when you were in school. This is when we went on such a trip." So, I carry that on, especially after the diagnosis, I purposely used photography as a way of remembering. And little by little she started losing the ability to remember where those pictures were taken. But for a very long time, those pictures that were in my mother's bedroom was a way to engage with her, to engage with history, her history, our history, and to create communication, which is very beautiful.

There's this beautiful, lovely picture of me when I was five, big black and white picture on the wall. And she would always go, "That's you when you were five. We lived in Rio." Whatever. And she always talked about that picture. And then one day, and I said, "Mom, what about that picture?" And one day she said to me, "That's my son." She didn't say, "That's you," anymore. So, who am I now? That's the moment where I became my father. And that is a very different part of the story because my father left her some 30 years ago, which created a very deep depression in her. All of a sudden, I became my father who had come back 30 years later. And little by little she started airing out her frustrations about my father leaving on me.

And I knew not to contradict her. I knew not to tell her, "I'm not my father, I'm your son." Because that created so much confusion in her, it created so much stress and confusion in her. So, I just let her air out her frustrations. And on those long walks, those 15-kilometre-long walks that we did through the streets of Lima, she would just tell me how bad it was for leaving her. And I just let her say it, just let her out all the things that she was never able to say. So, it was a moment to connect with my mother on so many different levels.

Michelle Memran:

Thank you, Alex. Thank you, Sonata.

Dr Sonata Mačiulskytė:

What about you, Michelle? How your relationship changed with your mother? Or not, maybe.

Michelle Memran:

Yeah, I feel like I'm being given a chance to have a relationship with my mom for the first time actually, where I really feel heard and seen, she trusts me. One of the first things when I started going to appointments, I asked all of these practitioners who were around me, I said, "Give me some advice. How do you do what you do?" And they said, "Love and trust, just build love and trust." And also, a lot of people in my family were in denial. And that's really hard. And that's something I think we've all experienced to a certain degree of people being like, "Oh, that's just normal ageing. Oh, that's just who they've always been." And as we know, these diseases can take root sometimes as much as 20 years before the symptoms happen, that we actually notice the symptoms. So yeah, my mom and I, like my way in is always like, how do we work on something together?

So early on, I pulled out a screenplay that I wrote when I was 23 that my mom helped me write. It's a terrible screenplay, but my mom played the mom, and my brother is in it. It's about me and my brother and my mom, and the mother has dementia in the screenplay that I wrote when I was 23. And now we record the screenplay. My mom plays Ruth in the screenplay, and her boyfriend is the Hollywood agent. It's a crazy meta story, but we record together. She loves the camera. I don't think I'll ever do anything with this footage, but it allows us to be together in a way that I feel comfortable and she also feels seen and a part of something that we're working on something together. So yeah, I mean that's actually a great transition into this next question.

One of the things that makes this conversation unique as we've all been discussing is that we're not only care partners, we're also artists, social scientists, researchers, and advocates who are working in the field of dementia. So, our lived experiences aren't separate from our work. They shape it. So, Alex, Sonata, how has your personal story and experience of caregiving shaped the way you approach your professional work right now? Is there a different lens, photographer Alex, that you're using?

Alex Kornhuber:

Yes, absolutely. Absolutely. Like I said, I'm new to the field of dementia and ever since my fellowship at the Global Brain Health Institute at GBHI, I have learned to train my eye and my craft to document how people age around the world, especially in my country of Peru. How do Peruvians age in health and in disease? And I have to say that I started documenting my mother because that was the closest to me. And because it was only very natural to document my mother's journey through dementia.

And people often ask me if it's difficult to photograph people with dementia. And yes, it poses a lot of ethical issues that I had never encountered before in my life. To photograph people with Alzheimer's that will not remember being photographed. To photograph people that are perhaps not able to give consent. And those are ethical, really big ethical questions that I struggle with to this day as a photographer. But I document to show the disease, right? Because I want to bring awareness of the disease. And I think it's only fair that I start doing this with my own mother, with my own life, with my own personal story.

And that in doing so, that has opened up the doors to other stories. Because when I, through my travels in Peru and I have encountered so many families that are caregivers, so many stories of dementia, I think we've all agreed every family's journey to dementia is different. As I have encountered all these different stories, I come with my own personal story, with my own pictures and my stories to share with them. And that has opened up a whole new world for me as a documentary photographer. It is very difficult to document somebody with dementia and especially a family, how it affects a family, but I'm the first one to do it for myself. So, in doing so, it has influenced my work in a way that I never thought it would be possible. And we have so much in common.

I say, "Oh, my mother has developed this fascination with keys." He's like, "Oh my God, my mother has also developed a fascination with keys." Oh my God, we have something in common all of a sudden about things that we don't dare talk about, because we don't. This is, I think, the biggest misconception. We don't talk about our struggles; we keep it inside. It's really hard for the caregivers. And I find that when I speak freely about my experience, when I speak freely about the things that make me cry, that give me pain and the joy as well, then I have others open up about this as well. And that has led me to be able to document how people deal with a diagnosis of dementia.

Michelle Memran:

Sonata?

Dr Sonata Mačiulskytė:

I think that caregiving completely changed or shaped my understanding of my work, what I do, and not just what I do, but also how I do it and why it matters. And it gave me a new perspective and a new purpose that I should start with saying that actually probably for many years I lived two lives. So, one life was professional, and I really pretended that nothing is happening in my life. And I really tried my best to be very, very much effective in work. But actually, I struggled a lot because the same time I was caring, and it affected my relationship that I was burnt out and it affected my efficiency. I tried to be very effective, but I really, it was so difficult.

So totally, I think that I did a lot of harm to myself with being effective and denying my limits. And the other side, when I started, how it came very unnoticed, this acknowledgement or this reshaping of my work that I'm a university professor, so I am teaching. It was a hard time for me, and I started to learn a lot about what is dementia, especially when my mother moved to residential care, I really started half time, which I had not before.

And I started to bring this topic, what I learned, what I learned about myself also to the class, like cases to my students. And I just realised that then I was myself. I was very passionate. I was very real, very authentic I guess because the feedback from students was amazing. I didn't expect. I didn't do this for this purpose, but I started to receive an amazing feedback of the being real, being authentic, and being brave to share. Not always I say that it's my story, I don't want to dominate, then it can be also other complaints about it. I also collect other stories through this, and I put it equal, but I see the stories totally different. And this is also what Alex said. When I started talking myself and started to talk, I'm not very brave person and I'm very introvert and not a lot of people actually know what I went through and what I experienced.

But when I start talking and actually it opens other people. And when I felt that I was so alone in this journey for many, many years, this opening up and this talking about it opened so many people. And we are in this field of brain health in general. And I think, I don't know how about you, but I see that how many people in this community, huge community, are not only professionals, but they also have their personal stories behind. The next step for me was actually taking this or applying for the Atlantic Fellowship just to feel myself more comfortable about it because I still know too little. But when you talk about your experience and you say, "That is my experience and that is my mistakes, there are my limitations which had a lot of consequences." And that opens people. And it's very much rewarding.

Alex Kornhuber:

And what do you think prepares us for that? I'm thinking about all the millions of stories around the world, all the different people that are experiencing dementia in their families. We're just three families here, just three people. But...

Dr Sonata Mačiulskytė:

For me it was very crucial the feeling not to be alone. And I think that sharing it also creates this, that you are not alone with any... You have some challenges at your home and very strange ageing of your parents or relatives or your grandparents, and you are not alone. And there are people who maybe went through it who are more and more advanced, and you have, and I say to my friends, but I know all my friends' parents and I ask them, "Come to me, let's talk about it."

Michelle Memran:

And I think that vulnerability of just saying this is happening, sharing what's happening, being proud of being a care partner. I mean this is the real work of being human is care. And that allows us to connect with each other. I mean the three of us are, I mean, I feel like I know you both so well in so many ways and we just don't really know each other, but we know each other through this experience and through our commitment to the work that we're doing at GBHI and as Atlantic Fellows and as ambassadors for, there's a different way to go about doing this and communicating. And I think that's really necessary too because there's so much stigma and there's so much stigma and people are terrified of these illnesses and we're missing the humanity in it all. So, it's just really great to be in conversation about the humanity of this.

So, we're nearly out of time, but I'd like to end with a one sentence, well, it doesn't have to be one sentence, but a reflection from each of you. If you could change one thing about the way people think or talk about dementia, what would it be? Alex?

Alex Kornhuber:

Well, I'm of the belief that we do not talk, we do not talk about this at all. I believe we should start as early as possible. I think we should begin talking about protecting our brain and protecting our bodies at the earliest possible time when we're babies, when we were very little. And that's something that we should carry throughout our lives. Somehow, we have not been doing it properly. We don't talk about this at all. What does it mean to talk about brain health that's so abstract for somebody like me or my generation? What does that mean? There's nothing I can do to my brain, but I'm a dreamer, right? I'm a really big dreamer. I daydream all the time. I don't have to sleep. I daydream when I'm walking, and I should be concentrating on work and I'm daydreaming.

And I daydream that one day in the future, next generation, the generation after that will have a different upbringing, will have an upbringing where brain health is an integral part of life. Just the other day I came across an ad from, I think it must've been the 19 late '60s, early '70s, not so far away, right? In my lifetime at least. But it was a cigarette ad, and it said, I don't know, one cigarette brand, "This is the one cigarette that the most doctors smoke, right?" "Yes."

Do you know what I mean? That's really amazing to think that doctors smoke so I should smoke. So, if we had that, why cannot go the other way and have a better future for the next generation? So, I dream of that. I dream of changing the way we live, the things that we consume. But unfortunately, there's a lot of inequity in the world. So, it'll probably happen in certain places first and in a few thousand years in another place later. I don't know. What do you think, Sonata?

Dr Sonata Mačiulskytė:

And I completely agree with you and the language actually I'm a very big fan of. Language is not neutral. It is political, it is social, whatever you put it. And I did my PhD actually about changing language in one field. And I would add to what you say, just broadening it. There are a lot of conversations which involve people with lived experience, a slogan like, "Nothing about us without us." But the reality in everyday life when we go to the doctors, when we go to a lot of other, live our social life, we hear talking about people with dementia, not with them. So, we have to change this narrative to talking with them and they will tell until you don't know what it is, you believe about it. You can't believe or you just believe it's so far in the future, maybe I will not live until. I want to live full life now. And it doesn't matter what it happens, say in 50, 60, 70 years, I will not think about it.

And when we change the language, we are able to change the culture. And when we change the culture, we create space for better everything, care, stronger communities, more human relationships, and more natural approach to the processes which some of them are unethical. You can't change; you can't slow down. Why not to do this? But not to make, not to sacrifice anything and make it a natural part of your life. So, I think that that is important to add to what you said, Alex.

Michelle Memran:

I think that what I would like to change is, I second both of you, and I would like to change. I mean I would like for dementia to become a disability and for there to be differently abled thinking modalities for us to be using those for people. I believe everything should be co-created. And I think that as much as we can. And I think until we change the narrative, nothing is going to change in any way. And I think we have to start working with the media and really telling stories that we're not seeing. I think it's hard. I think one of the things that I've learned from being a care partner, because I was working solely with people living with dementia, and that was my focus, now as a care partner, I have much more empathy. I have a different way of thinking about it. These are seemingly impossible situations depending on the moment, depending on the day.

But if there are communities built up, not only for people living with dementia, but for care partners, but for both, for all of us to, for organisations are so siloed as well because there's such a scarcity of resources for funding for dementia organisations. So, there's not a lot of cross-collaboration around organisations. And I think right now in the world in general, we just need cross-collaboration. And I think of the people living in my life who are navigating cognitive change as my mentors. And I think if we can reframe some of that, it helps me as a care partner. I think it could help others.

I just want to thank you both for your expertise and your humanity and your willingness to share these stories. I know it can be very vulnerable to share about what we're experiencing in our home lives when we're in the professional context. I think as an artist, my professional context is, maybe Alex, you could relate to this. It seems to be there's a lot of blurring, but it's been a tremendous conversation. So, thank you. And I want to thank Dementia Researcher and Adam Smith for giving us the opportunity and the platform to discuss our personal and professional journeys. I'd also like to thank the Global Brain Health Institute for giving us the opportunity to be fellows so we can actually expand and dream into what this work can be. And if you'd like to learn more about the Atlantic Fellows for Equity and Brain Health and the work of the Global Brain Health Institute, please check the episode notes.

And also, applications are still open for the 2026 cohort at both Trinity College Dublin and the University of California, San Francisco, and they're due in September. So please check the websites and apply. Clearly, we have a lot of very warm and grateful feelings about the programme. And I'm Michelle Memran, and this has been the Dementia Researcher Podcast with-

Dr Sonata Mačiulskytė:

Sonata Mačiulskytė.

Alex Kornhuber:

And Alex Kornhuber.

Michelle Memran:

Until next time, thank you for listening and for helping to create a future where lived experience is truly honoured.

Voice Over:

The Dementia Researcher Podcast was brought to you by University College London with generous funding from the UK National Institute for Health Research, Alzheimer's Research UK, Alzheimer's Society, Alzheimer's Association, and Race Against Dementia. Please subscribe, leave us a review, and register on our website for full access to all our great resources, dementiaresearcher.nihr.ac.uk.