Walking The Talk For Dementia was the brainchild of three people, including two Fellows for Equity in Brain Health, Fernando Aguzzoli-Peres from Brazil and Clara Dominguez from Santiago de Compostela. They, along with Brazilian Gustavo San Martin, wanted to organise a conference with a difference where, over four days, people living with dementia, practitioners, researchers, caregivers and Atlantic Fellows walked and talked together to better understand each other’s experiences so that collectively they could create change.
INTRO Hello and welcome to Atlantic Fellows Conversations. I’m Fionnuala Sweeney.
In May 2023, Atlantic Fellows from several equity-focussed programs around the world, joined the Walking the Talk for Dementia along the Camino in Spain, ending in Santiago de Compostela. They were able to do so because of grants awarded by the Atlantic Institute in Oxford which supports Fellows from the seven global Atlantic programs to connect and collaborate for change.
Walking the Talk for Dementia was the brainchild of three people, including two Fellows for Equity in Brain Health, Fernando Aguzzoli-Peres from Brazil and Clara Dominguez from Santiago de Compostela. They, along with Brazilian Gustavo San Martin, wanted to organise a conference with a difference where, over four days, people living with dementia, practitioners, researchers, caregivers and Atlantic Fellows walked and talked together to better understand each other’s experiences so that collectively they could create change.
C Dominguez: I’m Clara Dominguez. I’m a Brain Health Atlantic Fellow, and I’m also a neurologist here in this north-western corner of Spain, in Galicia. We are here at the end of a wonderful experience, the Walking the Talk for Dementia, four days of Camino de Santiago, and two days of symposium, together with a very good friend and co-Fellow, Fernando Aguzzoli. And also, a very good friend and collaborator, Gustavo San Martin.
I think the most important lesson for me from this experience is that good things need time. People need time to think, to talk, and to work together. And we don’t have a lot of time normally to do these things, so it’s good to take the time to talk about something as important as how we are going to take care of people living with dementia, and how we are going to face the ageing society’s challenge.
We only took a week, but it made a difference. It will help me on the cases that I manage every day at the clinic. When I look at the patient and their caregiver that I have in front of me, I will probably have a more complete view of all their social and cultural realities surrounding them, and that is completely crucial for the way they will face their diagnosis and develop their journey from the moment they exit my consultation. And I think that’s almost half of the possibilities of having a good life for the rest of the time they have.
F Aguzzoli-Peres: So, it’s traditional along the Camino to get stamps on a credential that we call the pilgrim’s passport, and you can get the stamps in bars, pubs, restaurants but also in the churches. I have one full of stamps at home. I walked 128 kilometres and I actually have a few notes underneath the stamps. For example, the best tortilla in the Camino, the coldest beer. So, we are in a church now in the beginning of the Camino, in Sarria. And we are getting the first stamp in a church and that’s very special for our group.
F Aguzzoli-Peres: We are in one of my favourite places, in Santiago de Compostela, which is an amazing and beautiful city. I’m Fernando Aguzzoli-Peres, Atlantic Fellow for Equity in Brain Health.
My grandma was a really special person. She taught me so, so much. Even when she was diagnosed with dementia, which happened six years before she died; she lived six years with the diagnosis. I had to learn a lot about how to deal with that. I couldn’t change the diagnosis, but I had to learn how to make the experience the most pleasant as could be.
My grandma always taught me not to lie, for example. Say the truth, it doesn’t matter the consequences. On the process of living and progressing with dementia, I perceived the truth bringing bad memories as well. For example, when my grandma was questioning, “Where is my mother?” At first, I thought that was my mission, to say the truth, so I was saying and proving to her that her mother was gone. And she would start crying. She would be horrified with the news. And then she would cry because this happened many years ago and she forgot. After a while, I figured out, “OK, let’s try to make it better.” So, one day, I remember she asked me, “Where is my mum?” And I said, “Your mum is in the beach.” She was surprised, and she said, “Who took her to the beach?” “Well, her boyfriend.” She said, “She has a boyfriend?” And I said, “Yes, she has a boyfriend.” “Oh, well, she must be so happy. And she’s at the beach.” Because, she was very poor, she never had the chance to go to the beach. And when she would ask me, “Who is paying for this?” I would say, “You’re paying. You gave her the weekend off.” And she would be so proud. So, knowing that she was happy… There is a train passing by now. This is a train that takes tourists to their old city in Santiago de Compostela, and especially kids.
So, as I was saying, my grandma proved me that it’s not about the truth at that moment, it’s about the impact of the truth for her. I knew that she was going to be happy with knowing that her mother was fine. This was a therapeutical lie, but this is something that only those who really understand the biography of that person have the right to do. It’s not something that you do for someone to sit and to be quiet.
The cars are starting to arrive for the Mass. This Hotel San Francisco is actually a convent from the 13th century, and they have still monks living here, so better to go to the convent garden…
It’s been a long process of organising and planning everything for the Walking the Talk. Everything started with my grandma, then I got Clara, Gustavo, and all of a sudden, we were developing this huge project, Walking the Talk for Dementia, that would start with an immersive experience, and then a symposium.
It’s so lovely to see that the first day worked so well. We managed to get around 70 people to come to Santiago de Compostela. We have more than 40 nationalities here, from 30 countries, different Atlantic Fellows that are working with dementia, that are living dementia with their parents, with their grandparents. Having the chance of walking with people living with dementia, and family members, you get a sample of what we live every day, not like in a conference where someone is standing and talking about the topic. And when I say, “We,” it could be Laurie, living with dementia, or myself as a caregiver.
When we started developing the Walking the Talk for Dementia, the first person that I invited to come was Laurie.
L Waters: And we’re actually here, walking the Camino. The caregiver that came with me, one of my friends, got sick, and I didn’t think I’d be able to even walk it on the very first day, but I knew I had to do it because of you. And now today has been an amazing day because you kept me going, and you made sure that everything was perfect for me.
F Aguzzoli-Peres: I knew this project was not going to be easy, as the Camino shouldn’t be. So, you need to go through the process, you need to go through the challenges.
We are talking about the Camino, but life is the same. You need to go through the bad and the ugly to be able to identify the beauty in life, in the Camino. So, I knew it wasn’t going to be that easy. I knew we were going to face a lot of challenges, individual challenges, but the thing is not avoiding the challenges, but mitigating the negative aspects of dementia to make you able to do it, to have the better assistance possible from our team, from each other, from the participants. Kevin is living with Lewy Body Dementia. He lives in Ireland, and he told me today that, in two days, he walked more than in ten years.
L Waters: Yes.
F Aguzzoli-Peres: Can you believe it?
L Waters: It is wonderful. It’s amazing, and he’s done it!
A Dwi Martha: So, my name is Angga Dwi Martha. I’m one of the Atlantic Fellows from Indonesia. We are here in the middle of this greenery, in rural Spain. It’s so windy! You can hear birds chirping everywhere. And what I can see is actually the end of, I think, beginning of spring: flowers blooming everywhere. And you see farmers, people laughing. They’re enjoying themselves. And when I think about it, it’s just so beautiful here and so peaceful.
M Chan: We are on day two of Walking the Talk for Dementia. We have just finished five kilometres. Everyone’s enjoying their snacks, drinking water, juices, and continuing the conversations. It’s so amazing how people just break slowly into groups organically and have conversations around the work that you do.
My name is Melissa Chan. I’m from Singapore. I’m with the Global Brain Health Institute, and an Atlantic Fellow, and it’s wonderful to be here with my fellow Fellow, Angga, from Indonesia.
A Dwi Martha: Hi, everyone. I’m part of the Atlantic Fellow Programme for Health Equity in Southeast Asia. We are sitting down in this small village. The air is so fresh. A perfect environment for the walk on the Camino.
M Chan: Yes, it’s so seldom that we get to come together in such a relaxed environment. We’ve had such nice conversations about intergenerational work, when it comes down to dementia and brain health.
A Dwi Martha: Yes, the intergenerational part is very important. I’m actually working a lot with youth empowerment, working with young people. It is very important to engage young people in this conversation because they are a large population in our society, and they also have a lot of ideas they might be able to bring to the conversation. People with dementia, they’re still able to do their daily life, they’re still able to contribute to the societies, but understanding is needed to fight against the stigma.
M Chan: Yes, oftentimes, especially in Asia when I work with younger people, we see that sense of fear in engaging with seniors or people living with dementia. Not because they discriminate them, but because maybe they just don’t understand the condition enough, or what happens to them. So that causes a barrier which makes it very difficult for them to engage with people living with the condition. My dad was diagnosed in 2004. He passed on in 2014, and I think through the 10-year experience with my dad, I was inspired to quit my job in hospitality, and go into the work of dementia after he passed on.
My work is looking at services, and the design of the services, and ensuring that we bring in the voices of carers, we bring in the voices of people living with dementia. And something that Angga brought up even before we started walking yesterday was, “Are you talking to listen? Or are you talking to respond?” That’s something I’ve really taken with me and been thinking about in every conversation, every interaction that I’ve had with people. Everyone has a different experience. Every story is important, and every story makes a big impact in how services and programmes can be designed. So, taking into account that experience is important.
A Dwi Martha: Actually, this walk clearly opened up my mind, just walking with a lot of peers with dementia, and see that they’re actually still able to do a lot of things, and actually faster than me when they climb up! That’s amazing, and it is something that really changed my perspective.
A Dwi Martha: We’re coming to our six kilometres for today, and we’re stopping by the side of the road. We have some police actually escorting us to cross the street. It’s a very busy street. There’s a lot of cars, so you will hear some noises from the background. I’m one of the Atlantic Fellows working with youth engagement and empowerment, and here with me today, I have Elaine.
E Mateus: Thank you, Angga. I’m Elaine Mateus. I’m from Brazil. I’m the President of the Brazilian Federation of Alzheimer’s Associations, and I think it was on the first day when we were walking together, and it was such a nice and interesting conversation, to meet someone really willing to inviting the young generation to work in causes such as this, because usually when we think about dementia, we think about old people, and why bother about old people. So, having young people integrating with old people, I think it’s critical for changing how the future is for everybody, not only for old people but especially for those young people because, yes, they’re going to grow old, luckily! So, that’s amazing, the work you do, and how you advocate for young people to work with not only old people, but intergenerationally.
A Dwi Martha: And I think I learned so much from you as well about empathy. When I came to this walk, what I have in mind is intergenerational discussion, but I think deeper than that, it’s empathy. If young people know about the issue, they care and have empathy, and they actually could be an advocate in their community or in their family as well. I come from a country where people don’t check for dementia or Alzheimer, and if young people are aware about that issue, and they can just like, “Hey, let’s go to the doctor,” I think the world will be much better.
E Mateus: Yes. I think that’s what it’s all about. It’s not only about talking about dementia, it’s about feeling what it is like to be living with dementia, to be a caregiver. And when you talk to different people, different experiences, you can really somehow put yourself into those persons’ shoes, and realise what is life for them, and how can you help them have a better living and quality in life.
A Dwi Martha: Yes. And now we need to cross the street. We only have the police for short seconds, so see you later!
E Mateus: Yes. We don’t want to be left behind!
L Molete: My name is Lebo Molete. I come from Johannesburg, South Africa. And I am on the Health Equity programme called Tekano in South Africa. I was invited to come to do the Walk the Talk for Dementia by Fernando Perez, and I’m excited to be here.
M Sigauke: My name is Maureen Sigauke. I am attached to the Atlantic Fellowship for Social and Economic Equity. I was also invited by Fernando, to collaborate with him, also stand in solidarity with him as we walk for dementia, with participants from all over the globe who are either working on dementia or living with dementia. So, it’s been an immersive past two days. Lebo, when you got the invitation from Fernando, what was going through your mind, and what got you to say yes?
L Molete: I must confess, when I had the invitation I thought, “Why do I need to go to Spain and talk about a South African experience?” I didn’t feel that we have too much to contribute. Now that I’m here, I see the value of it all, not just for myself, but for people I’m representing, dementia patients in South Africa, and their carers.
M Sigauke: My focus is on community empowerment. I’ve been working in areas of politics, governance, climate change, education, but I hadn’t been talking about mental health specifically. I was thinking, “What value would I have?” But then I started having conversations and discovered that a lot of people within my community, in my social circle, were dealing with mental health in one way or the other, and when you focussed on dementia, a lot of middle-aged people, working class people, were either supporting their parents or their grandparents who were living with dementia. And that’s when I realised that if I am a community leader that I say I am, I need to be a visionary and start looking at mental well-being, looking at conditions such as dementia, and bringing them into the conversation.
Zimbabwe is a country that is deeply religious, whether you are Christian, or you believe in the African religious tradition, or whatever you affiliate to, where people believe in the supernatural having an impact on our day to day lives. I’ve seen it positively influencing and shaping lives, but I’ve also experienced the supernatural belief that I talk about, negatively influencing behaviour. And when it comes to mental health, my biggest concern is how people tend to then point fingers to the supernatural as the cause as to why you have depression or you have dementia, or you’re forgetful. And because of that, we don’t talk about it enough, and those people that are experiencing it, I’m sure don’t feel comfortable enough to come out and say, “This is what I’m going through,” because of the stigma that it’s associated with. And I wonder how it is, Lebo, in South Africa?
L Molete: I had known about dementia to some extent but a year ago, my dad was diagnosed with dementia, so I decided, from that day on, that I want to learn about dementia and everything there is to learn about it. I wanted to know what it is, what causes it, what does it look like.
But also, you mentioned the spiritual aspects of it. Those could be very difficult to navigate and manage. For instance, I know part of my family decided very early on they will go and seek help at church, and in some cases, a traditional healer. I don’t think that has yielded much. I’m not undermining those systems at all; I think we need to integrate them. But there’s got to be a very concerted effort to ensure that all three systems, including the biomedical system, work together to support people with dementia.
M Sigauke: For me, my activism with community now looks at breaking down the social aspects. And one way of starting is talking about dementia, demystifying what our cultural beliefs are that might impede you getting an early diagnosis, or that might impede you from properly supporting a relative, a sister, a brother or a mother going through the same process.
So, I feel one way to bring the walls down is to have testimonies of people who’ve actually had early diagnosis, and are living their life to the fullest, given the circumstances. And we got inspired by Peter’s story. Peter is from Singapore. He is 63, and he got diagnosed when he was 61, and that’s quite early, according to dementia. It’s early onset dementia. When I got told that he had dementia, I wouldn’t have said he did, because I could see him taking in nature, walking with us, exchanging kisses with his beautiful wife, Yvonne. He was living what I looked at as a normal life. So, then I thought, it’s possible.
So, how more effective would it be to have testimonies of people living with dementia to inspire people to come out and break down the stigma that surrounds dementia where we come from? What do you think?
L Molete: True. Before I came here, I had thoughts on how to tackle dementia back in South Africa, and one of them was a huge campaign on public awareness through community radio stations. You know, we have about 249 community radio stations in different languages, and obviously some of these radio stations are themed around either religion or music, or some of them commercial, entertainment, and so forth. But all of these are very useful in ensuring that word can go out. They are the voice of the community. And although people still rely on cell phones or social media, radio is still a huge medium, and a platform that a whole lot of people listen to.
L Molete: On day two, I had a great conversation with Dan Cohen, and it really is going to mean a huge change on what I do on dementia back home in South Africa. Music has been one of the main activities that we do in South Africa, but I’ve never thought about incorporating it in our interventions. But since I met Dan, I have now gotten an even greater impetus to integrate music in my dementia interventions in South Africa. And now I’ll hand over to Dan.
D Cohen: I’m Dan Cohen. I’m from New York. It turns out music is underutilised as a way to improve the quality of life of people with dementia. Right to Music is the theme and the name of my entity. I have also founded Music and Memory, which is a protocol for large scale adoption of personal music. If you totally customise music for each person, reconnect them with the music that is core to their life experience and has meaning to them, then it’ll help them stay connected with the parts of the brain that are not affected by the disease. Hearing is the last sense to go, and between that and the fact that a brain does not deteriorate in its ability to gain pleasure and enjoyment and stay engaged and connected with others, all these things are facilitated with music. That’s a gift that we want to take advantage of more.
L Molete: Dan is right. We have emerged recently from apartheid, and I remember that when I was young, we used music – and this is singing, dancing, playing music - when it was very difficult. We should have been a hugely traumatised nation through apartheid, but we used music to help us cope throughout. We sing when a child is born, when there’s a death, when we’re happy or when we’re sad.
We didn’t see it as therapy, but it is. When I listened to Dan, I thought, “Yes, that’s correct. It is therapeutic.” So, I love what Dan does, because he has actually formalised music as non-pharmaceutical therapy, for dementia in particular. So, as I was listening, I thought, “That’s what I need to do. Formalise music in the interventions that I want to do in dementia.”
And what I’m learning from what Dan has done is that music has got to be personalised. Each person will have their own, for lack of a better word, playlist. That’s one. But also, I am thinking of getting together dementia patients, ten or so in a room, and playing music that will be common to them, but integrate dance, and get them to talk about how they feel.
And I’m thinking, I have a dad who lives with dementia. He’s not a very happy man. Yes, he gets sufficient medication, gets to walk about, but I think that’s probably one element that’s missing. And again, I am going to make it my personal business to ensure that I get music in his therapy, and expand it beyond just our home, to other people.
I Leroi: My name is Iracema Leroi. I’m Professor of Geriatric Psychiatry at the Global Brain Health Institute at Trinity College, Dublin. I also work in St James’s Hospital, where I’ve set up the Mind and Movement Clinic for the diagnosis and support of people living with less common dementias. A lot of people I see in my clinic will be people living with Lewy Body Dementia, which accounts for about 20 percent of all dementias.
I’m here in Santiago de Compostela, taking part in a magnificent event, called Walking the Talk for Dementia, to raise awareness and move forward our agenda for dementia, while walking the Camino together. We have people from all over the world, all related to dementia in some way. So, I’m here today with Kevin Quaid and Helena Quaid. Both of them have a lot of experience in the area of dementia. Kevin, you talk a lot about you having a diagnosis of Lewy Body, but your wife, Helena, being the one who lives with it.
Helena, tell us a little bit about what you experience as Kevin’s care partner in this journey.
H Quaid: Thanks, Iracema. I feel that, as Kevin’s spousal carer, and caring companion, it is so important to be involved in all the advocacy work and all the research projects as possible. Kevin was diagnosed age 53 with Lewy Body Dementia, and it started off with a lot of loss. Kevin could no longer drive because of his visual hallucinations. He would see cars. He would see people on the road where there weren’t any. He could no longer work because of his executive deficiencies. So, there was a lot of adapting to this new normal, a lot of trying to understand the anticipatory grief that came with such a diagnosis, and the transition was tough.
On the journey to acceptance, it is really important, as the caring companion, to have support. I’m very lucky in that I have four sisters, and I actually have six brothers, so I have lots of support, and our children have been wonderful. But as a spousal carer, I was feeling guilty if I couldn’t do it all myself, if I couldn’t just keep my head above water myself. And it took a little bit of time to see I needed to ask for support.
With Lewy Body Dementia, it is a journey. I don’t know where I am on the journey, but both Kevin and I, we live in hope. We live one day at a time, one moment at a time, one hour at a time. And there are positives to Lewy Body Dementia, because Kevin’s memory is still quite intact, and there are fluctuations, therefore Kevin could have a very bad morning and be very ill, but he would have a great afternoon.
I Leroi: At this conference, we’ve been hearing a lot about the transformational power of music, and the impact of music on the brain, and the brain changes resulting from participating in listening to music.
H Quaid: Yes, I can see it with Kevin, and Kevin was a DJ at one point, therefore it really has a huge impact on our lives.
Kevin and I were involved in the University of Limerick with Dr Hillary Moss, and now Dr Lisa Kelly. There were six of us involved, and we wrote a song about dementia. The end result is that the time we spent together writing it, the inspirational, uplifting feeling we had singing it and practising with all the bodies, the result has been phenomenal. Kevin would always say afterwards, “Wow, I’m on top of the moon after that,” because he still had his voice, he could still sing perfectly, and all your muscles twitch and turn. Kevin, even though he has a movement problem with his Parkinsonism, and has a walking stick, his feet will tap as if there was nothing wrong with his muscles. His eyes flicker with the resonance of the beat. I can see him moving as if he was a 20-year-old, going back to the time when he was dancing perfectly. And he is just over the moon, in a great mood, and looking forward with hope.
K Quaid: Laurie, who’s on the walk with us, brought a stone from America and on that stone are the names of people with dementia. Thank God, I’m one of the ones that’s still living! But I just signed a name that I used to have when I was a DJ. I was known as ‘Big K’. And that’s the first time I’ve signed that name – my name is Kevin – but it’s the first time I’ve signed that name in six, seven years. Well, I was diagnosed when 53. So, I’m 60 now, 60 this year. So, it’s been seven years.
F Aguzzoli-Peres: We are on day three of the Walking the Talk for Dementia. I’m Fernando Aguzzoli-Peres, Atlantic Fellow for Equity in Brain Health. We just walked a little bit more than 11 kilometres. We are at the beautiful Convent Garden, talking to Kevin Quaid, dear friend living with Lewy Body.
Kevin, we are tomorrow going to walk towards the Cathedral, which is our final point. A few years ago, you wouldn’t think that the Camino de Santiago de Compostela would be something that you would achieve, and now you’re here, walking as much as you can, doing beautifully. How is it going?
K Quaid: It’s amazing. It’s exceptionally emotional because five years ago, we had to leave our house for five weeks while they made every room wheelchair accessible. And they had to make a quick route from our yard to my bedroom for an ambulance because I was so ill. I was on a walking frame, and I was supposed to go from there to a wheelchair. That’s what the medics thought. I went from the walking frame to a walking stick, and I always wanted to do the Camino, and I thought, “OK, if you’re in a wheelchair, you do the Camino in a wheelchair.” Then I thought to myself, “No, that’s not how you do the Camino. You walk.”
And I didn’t give up on my dream. The most I have walked in the last 10 years, up to yesterday, was three kilometres in a day, and yesterday I probably did six. This has been such a personal journey for me this week. I’ve met the most fantastic people I am ever going to meet. This experience will never, ever leave me, and you and all the other people, the way you’ve made me feel this week, the encouragement that you gave me, I don’t care how bad my dementia ever gets, it is not possible for that to leave my brain, and that, for me, is gold.
M Steele: I am Michelle Steele, an Atlantic Fellow for Social Equity, and I’ve come all the way from Canberra in Australia.
Around about two or three months prior to the Collective Leadership for Impact Convening over in Oxford in early December last year, I was at work and this guy had said, “Ah, yes, dementia prevalence for Indigenous Australians is three to five times higher than all other Australians. It’s actually climbing as one of the highest burdens of diseases!” And I’m like, “So what are we doing about it?” And he’s like, “I don’t know.” And I’m like, “Well, have you spoken to our Indigenous leaders? Have you spoken to gerontologists that specialise with Indigenous communities?” All these questions that flew up for me, and none of them had any answers.
So, I made this play for the brain people in Oxford, and one of them happened to be Fernando. I said, “You’ve got to link me into who in your cohort are doing things about Indigenous communities throughout your programmes. Who are they? Where are they?” And he started talking about his personal experience with his Nan, and then we made these similarities that, throughout cultures, there was no traditional words for dementia, or for memory loss. And in my head, I started thinking, “That’s right. Within my own community, we use this word, “Womba.” Womba is funny, but it wasn’t funny as in like a ha-ha comedian sense; it was ‘Womba’ as in, because they were starting to go a little bit different.
So that, for me, just triggered this passion that I didn’t know that I had within me, which is not only do we need to think about all those things that actually contribute towards dementia and prevalence rates within First Nations communities within Australia, but also, how do we care for our elders that are actually getting this disease.
My grandmother died of dementia. At that particular stage, I wasn’t really quite sure what it was. But I know that my mum struggled with the care, and the care options that was available. And then my dad was diagnosed at around 57, and he’s transitioned now to early stage. My dad used to be a boxer, and what scares me the most is if he reverts to violent behaviours, and the impact that that could potentially have on my mum, and that scares me a lot. So, I want to know more, not just because of what’s going to happen at home, and to be aware of behaviours or be aware of indicators, or what can you do to relieve stress, all these things, but at the same time, he’s not a child. He also needs to be in control of the things that he can do.
So, I was very, very fortunate. Fernando said to me, “Michelle, we don’t have any representation from Australia or New Zealand, but Michelle, more importantly, we don’t have much representation from Indigenous perspectives, and what does that look like.” And so very late to the piece, had asked me to come along.
F Aguzzoli-Peres: So today was the last day of Walking the Talk for Dementia. We started with an amazing surprise for most of our group. When we arrived at Monte do Gozo, where we started, we had around 200 people waiting for us there, coming from all over Galicia: buses with people living with dementia, family members, and representatives from organisations all over the state.
I just want to go back, more than a year ago, where Clara and I, we didn’t have any sort of idea on how to start this project, and then I got to meet Gustavo San Martin from Brazil. I mentioned to him the project, and then he told me a little bit about his story with his grandma.
G San Martin: Thank you, Fernando. I am Gustavo San Martin. I’m the Founder of CDD, which means ‘day by day chronic’ in Brazil. I’ve been working with rare and chronic disease since 2011, 2012, when I realised that I have MS, multiple sclerosis.
At some point, I realised that living with a chronic disease is more than just our diagnosis, so I really wanted to change the perspectives of life after receiving the diagnosis. My grandparents from my mum’s side, they died with Alzheimer’s disease. My grandfather lived around two years after his diagnosis. And my grandmother, she lived almost nine years, and my mum used to take care of her.
When Fernando told me, his idea, I couldn’t say no because both my grandparents are from Galicia, and my grandmother, she helped me a lot when I realised that I had multiple sclerosis. She gave me not only a purpose, but also the chance to develop my idea about starting my own patient group and helping to change the reality of people living with multiple sclerosis. She supported me a lot.
That connection of Galicia, Camino de Santiago, Alzheimer’s, just felt like a purpose to me. We came to Santiago de Compostela about 18 months ago. Clara is a neurologist from Santiago de Compostela. She’s a Fellow of GBHI, and she’s a friend of Fernando. We started to talk about our dreams, and everything seemed so connected that, the day after, we started to do Walking the Talk for Dementia, even if we didn’t know the name of the project yet! Right, Fernando?
F Aguzzoli-Peres: Yes, exactly. Clara had the local connections that we needed for making this a reality. Gustavo had experience, and also funding for us to begin the project. Much of our anxiety was because we didn’t know how this group of very diverse people was going to mingle and connect. And we were really, really lucky because we formed a family more than a group of people.
G San Martin: When you started, you said the last day of the Camino. For me, it seems the first day of the rest of our lives, living, but also doing something for dementia. It’s about changing realities, it’s about changing lives, facing stigmas, and also showing the world that people with a diagnosis such as multiple sclerosis, but also dementia, they have the right to keep living, to keep doing their things, keep dreaming!
I Leroi: So, we’d just like to give a few words of gratitude and appreciation for what we all agree on has been the most remarkable and transformational week of many of our lives. And we haven’t done this with abstracts, and we haven’t done this with scientific publications. We’ve done this with walking and talking, and thinking and sharing, and being together. So, on that note, we just want to express our huge appreciation to many, many people, of course…
B Lawlor: My name is Brian Lawlor. I’m Site Director for the Global Brain Health Institute, based at Trinity College, Dublin. I’m here in Santiago de Compostela to support the Walk the Talk for Dementia. I participated in the walk this morning, and really enjoyed it, rain and all! And I’ve got two great people here, Laurie and I’ve got Berrie. So over to you, Laurie. Tell us a little bit about yourself.
L Waters: So, I’m Laurie Waters. I’m 57 now, I think, or 58. I don’t know. I was diagnosed with early onset Alzheimer’s at age 52. When I was first diagnosed, it was very scary being such an early age with Alzheimer’s, because everybody that I saw at that time was 60, 70, 80 years old, and in later stages.
B Lawlor: That’s a misconception, I think, about dementia. Everybody thinks dementia is something that happens to people who are old. In fact, we know that one in ten people who get dementia are actually under the age of 65. So, it’s really important that people like you, who are living with the condition at a young age, are able to talk about it and let people know.
People like me, I’m a psychiatrist by training, we learn so much from people like you. Learning is both ways, isn’t it? I always feel that I learn so much from the people that work with me, and the patients, the families, people telling their stories. But to see people like yourself and Berrie walking the talk, out there showing that it can be done, living well with dementia, with purpose, it’s quite emotional. It’s quite uplifting, and for me, it’s just a wonderful experience to see it.
L Waters: Personally, that’s what this whole, entire journey has been the past four days, is walking beside researchers, and physicians, and psychiatrists and neurologists, and learning from each other that we all have the same common goal.
B Lawlor: One of the things that the Global Brain Health Institute is very much supporting is this idea that to change the narrative around dementia, we’ve got to break down these professional silos and work with people like yourselves. Patient public voices are so important.
So Berrie, you’re from Namibia. Tell us a little bit about your experience. You’re living with dementia, is that correct?
B Holtzhausen: Yes, it was diagnosed positively in 2020, November. I’m the Founder and the CEO of Alzheimer and Dementia Namibia. I started off in 2009. We do have a care farm in Namibia, where we care for people living with different dementias. Between 200-300 people we’ve cared for over the last 12 years, but a great deal of my work is in rural Namibia, where they perceive people living with dementia as witches, and kill them, ostracise them, burn them. It’s a huge stigma.
B Lawlor: In Ireland, in the old days, when people would develop dementia, they would say they were away with the fairies, which was almost like mythology, and almost like witchcraft as well. So, this is probably in every culture, but you’re trying to change this narrative. And I guess Walking the Talk is showing people that, people living with dementia, they’re not witches.
B Holtzhausen: Yes.
B Lawlor: They’re like everybody else. They’re human, and that’s what’s important. Tell me a little bit about these care farms. This is a concept that I’m not completely familiar with. Sounds interesting?
B Holtzhausen: Yes, I called it a care farm because I noticed that people with dementia, they want to walk for some reason. And then I start looking for an old farmhouse in order that they can have space where they can walk freely, where they can even be in the sun, out in nature, because we, as Namibians, are people of nature and of big spaces. So, the concept of this is, your room is only where you sleep in. Even if you lose your mobility, you just sleep in your room.
B Lawlor: It’s really, really interesting because what you’re doing is using the environment, nature, as a stimulant for brain health. And we know scientifically that this really does help cognition and memory, when people are engaged with nature, and you’re promoting physical activity as well. So, this type of lifestyle is really, I’m sure, helpful to stabilise trajectories or courses for people who are living with dementia.
B Holtzhausen: You’re 100 percent correct. We’re not using, for instance, medication. I’m talking about mood stabilisers, anti-anxiety medication. We use antibiotics, but not antipsychotics. Psychosis mostly is because of the urinary tract infections and stuff like that. So, we’re making use of the environment and nature, of exercise, being in the sun. I, myself, built my own room for the future in such a way that it can stimulate all my senses, with big windows, and sliding doors overlooking the desert.
B Lawlor: I think we can learn an awful lot from this approach, because to my mind, what you’re doing is reframing dementia from the perspective of brain health, because even if you have a dementia, if you’re living with it, you can have brain health, and you can promote your brain health, and that’s what you’re doing. You’re modifying lifestyle, you’re looking at exercise, you’re engaging with nature, you’ve got a lot of social connection. You’ve got a community there.
B Holtzhausen: Yes.
B Lawlor: All of these things are so important for your brain health, even if you have dementia. So, I think it’s a very positive story.
What’s happening in the United States with regard to awareness?
L Waters: There’s still a lot of work to do. I mean, thank goodness we’ve been pushing it in people with younger onset, and we’re letting our voices ring high and proud. We were at the White House because CMS, which is the Centre for Medicare and Medicaid, didn’t want to cover our medication. A new drug came out that can stop it in its tracks, and they said, “No, we’re not going to cover it.” So, we went to Washington. We protested in front of the White House, we met with congressmen, senators. And fortunately, the day before I arrived, got the news that they’re going to cover us!
B Lawlor: I think when you’re in the middle of all of this, it’s hard to see this, but I think we’ve come a long way. In 1991, there was no such thing as public patient voice. People like you were not talking about dementia. You weren’t walking the talk. But you’re walking and talking, and I think people are beginning to listen, and you’re beginning to be heard whether it's about rights and medication, or whether it’s about dementia is not witchcraft. People need to be respected as individuals, no matter what. This is an illness.
I think we’re in a much better place than we were, but we need more people like you to walk the talk, and to show that even with a very serious illness, like a dementia, that with purpose in life, there is quality. There can be happiness, there can be joy, there can be more of the moments. I think that’s really what’s important. I think I experienced that today. I saw it and I heard it in the conversations that I had.
K Quaid: You are wasting your time researching Lewy Body dementia unless you speak to the people who are caring for those of us who have it.
The poem is called, Kevin, Lewy and Robin, by Kevin Quaid.
Kevin knew Robin. Robin didn’t know Kevin. / Kevin made hundreds laugh. Robin made millions laugh. / Laughter and good humour hid the pain, that Lewy was causing again and again. / Robin was in pain but didn’t know why. / Kevin’s pain was relentless to the point that he would cry. / Robin searched for answers but couldn’t find them. / Kevin’s search brought him Lewy but he didn’t let it define him. / Lewy was the cause of the pain. Lewy was the cause of the fear / while draining us of all good cheer. / Lewy was the reason Kevin and Robin hated the night. / Lewy was the reason Kevin and Robin were consumed with fright. / Lewy will you make you think you are going mad / and make you forget the good times that you’ve had. / Lewy will hide and drive you insane. / Lewy will cause you the world of pain. / Lewy is sneaky, menacing and unfair. / Lewy Body dementia just doesn’t care. / Lewy took Robin but old Robin won. / Lewy tries to take Kevin; Kevin’s not for going. / Many a battle is had with Lewy. / Some are won, some are lost. The end result is it will cost / your body, your mind and even your life unless you fight with all your might. / Lewy Body dementia is a horrible disease. It must be stopped and brought to its knees. / So, join me in the fight. Bring it out to the light. / Get rid of the stigma. Let’s fight in plain sight.
Thank you.”
K Ngcobo: Hello. I’m Khanyo Ngcobo. I am a psychiatrist and lecturer from Durban, South Africa. I’m also an Atlantic Fellow for Equity in Brain Health. I’m in Santiago for the Walking the Talk for Dementia experience. We’ve done four days of walking and talking, and now it’s two days of the symposium. We’ve had a lot of amazing conversations and fostered a lot of collaborations and connections that we will carry forward from this experience.
M Steele: I am Michelle Steele, an Atlantic Fellow for Social Equity. I had the pleasure of being on a panel with Maria, who was talking about the inequities of gender in dementia. During the panel, we had an opportunity to realise that, actually, if we were to combine both gender and indigeneity in terms of highlighting inequities, that perhaps our voices could be a little bit stronger within this area.
MT Ferretti: My name is Maria Teresa Ferretti. I’m a neuroscientist, neuroimmunologist. I’m a researcher in the field of Alzheimer’s disease, and a Co-founder and Chief Scientific Officer of the Women’s Brain Project, a non-profit association that studies sex and gender determinants to brain and mental health as the gateway to precision medicine.
L Molete: My name is Lebo Molete from Johannesburg, South Africa. I am a Fellow on the Health Equity programme in South Africa, called Tekano, and on this walk, I met Maria Teresa, and she’s able to take very complex scientific concepts and make them accessible to a layperson. That’s what I needed, and I think that’s what a whole lot of people need, who are tackling dementia at the ground level. So, I’m excited to be here, and I’m hoping, out of it, will come a lot more collaborations.
Apart from getting complex information and simplifying it, we have to be able to translate it, again, into different languages so that it’s also culturally appropriate when it’s delivered to communities through radio. And I’m glad, again, that this event has brought me in contact with Khanyo. She works in the same country as I do, a different part of it, on the east side. She works on radio, but with politicians directly, and she’s a clinician. And I think there’s a lot that we are going to share as well.
K Ngbobo: Yes. We are active on the radio, but it’s always about how sustainable projects are. It is such a powerful tool because in our culture or in our country, listening to the radio is what people do every day, even when they are working on the field. There’s radio shows where you must send a shout-out to your family, and this person will be like, “Hi, I’m out on the field, I’m ploughing, but shout out to my aunt who’s up in Jo’burg working,” so the reach is so wide.
And we’ve seen, when we do advocate on radio, because I also support dementia advocacy groups as a clinical lead, people are just like, “You know, what you’re describing, I didn’t know there was a word for it, but I’m here struggling.” And then the follow up is, “Where do I go?” So, when you raise awareness, you’re giving people information and then you’re capacitating them to say, “OK, you’re at home there in your village. This is where you go. These are the pathways to care,” and it starts the conversation.
M Steele: So, this is the beauty of collaboration, right? It’s not only about that direct collaboration; it’s about learning and taking the insights as well. Australia also has similar access to radio stations. We have an Indigenous broadcasting service, and especially to remote Australia, and quite often it’s delivered in local languages because Australia’s language is so diverse. We have over 250 languages, 700-odd dialects.
So, that ability to actually utilise radio as a forum to get messaging out, and important messaging, especially around dementia, for example, is an idea that I can take and replicate. And Lebo, that’s where your practical example around how you have utilised a local radio first, and then scaling up, thinking about what does that mean nationally, is a concept that I think Australia can really grasp onto and learn from.
MT Ferretti: So, for me, one really great outcome of Walking the Talk for Dementia might be then to start collaborations with a lot of you guys.
A lot of health data, dementia-related data, that are collected do record if a person is a man or a woman. The point is to go there and analyse it. So, I see a lot of opportunities for us, because we might start a collaboration, a project, where we see what data have been collected so far, and we stratify this data by sex and gender if possible, and we see if we notice the same differences that we have in other cohorts, in other countries, and we start reasoning together, based on the data, what could be the next steps. Because we need evidence to make the point, especially for policymakers.
We have been studying, at the Women’s Brain Project both sex and gender differences in Alzheimer’s disease. When I’m talking about sex, I’m referring to biological differences driven by chromosomes and hormones. Gender is the sociocultural construct of being a man or a woman in a given society. There are biological differences in the disease. Women tend to be more vulnerable, to progress faster with the disease, to accumulate more of the tau pathology, and this might be linked to hormones, especially to menopause.
But there are also gender differences, so the sociocultural, and the social determinants of health. One typical example is access to education. Low education is a risk factor for dementia. Unfortunately, in many countries, women have more difficult access to education.
So, these types of differences are important to consider, to tailor then solutions. And we have to see how these differences, studied mostly in Europe, in the States, in very well-developed countries, we actually have to go back and see how they look like in completely different geographies.
K Ngcobo: Maria’s work is very interesting because it’s things that are not necessarily the first thing that people think about. We know about them, but we’re not really aware. But the information and all the data that she’s gathering should help us in how we practise, and how we research, and in how we advocate. So, it’s a big gap that we need to be more active about trying to bridge and trying to be more active in making people aware of those things.
M Steele: One of the sessions this afternoon is What Can I Do Next? and I want to create a First Nations specific arm of dementia within our advocacy and policy space, thinking about community awareness and radios, but really draw on the inspiration that we’ve picked up here, to commit, to take that home and make that difference.
A Dwi Martha: Hello, my name is Angga Dwi Martha. I’m one of the Atlantic Fellows on Health Equity in Southeast Asia. We are here on the final day of the Walking the Talk for Dementia. We’ve been hearing a lot of new ideas from the symposium, and we are in the coffee break.
I realised from a lot of talks that, on the issue of dementia, young people have a lot of power to contribute on the research, to contribute on an advocacy, and I could see three main roles of young people. First, is young people as beneficiaries. A lot of stories about young people being caretakers, the grandson or grandchildren of people with dementia, but also young people as collaborators, and I think there’s also young people as leaders.
M Sigauke: My name is Maureen Sigauke. I’m from the Atlantic Fellowship on Social and Economic Equity, Zimbabwean by birth, resident in Zimbabwe.
I’m a young leader working with communities. So, when you start talking about young leaders, I think of exactly the same things that you are looking at: young leaders as agents of change, young leaders as caregivers. Because where I come from, when you start talking about care for the elderly, the people who find themselves caring for the elderly are what we define as young, in my context, which runs up to 35, or up to 44.
But most importantly, I think young leaders, as myth-busters. Where I come from, we believe that dementia – and this has been an ah-ha moment for me in this Camino – I thought dementia was a natural ageing disease. I thought dementia was white, as well, from a racial perspective, therefore was a Global North phenomena. And when I started talking to, for instance, Randall, telling me his work with young people in the Clinic, it was like a lightbulb moment to discover that it’s not what I thought it was, and it could affect people of different ages, including young people.
R Perez: My name is Randall Perez, and I am the Director of a Young Onset Dementia Clinic, which is a national plan in Costa Rica to attend patients who have a young onset dementia.
The most important thing is to make the diagnosis of dementia a multidisciplinary diagnosis, not just a diagnosis for the clinician, not just a diagnosis for a neurologist, but a diagnosis that goes with the hand of the caregivers, of the nurses, of the psychologists, of the policymakers, of the people who really can make changes in this world, to attend the people with dementia, especially in the young ones.
The whole population that is affected by dementia suffers from inequality, but the people that have a dementia that starts before they’re 65 years suffer more inequality because they have generally bad diagnosis, they have difficulties approaching medical doctors, and when they can approach medical doctors, sometimes the approach is incorrect. For example, some of these patients are just taken as psychotic illnesses, as depression or anxiety while, as a matter of fact, they are developing an atypical course of an Alzheimer’s disease, which these young onset dementias have by the norm.
M Sigauke: As you were talking, I tracked back to the conversation we ended up having, and the presentation you just gave, about how government and decisionmakers at a policy level can change the trajectory of how people interact, deal and manage dementia. Because I’m from a Fellowship that’s focussed on socioeconomic inequalities, where do we locate the role of governments when you are looking at making sure that people interact with dementia better? And the case of Costa Rica gives me hope, the fact that there was a deliberate willingness to focus on health and education, and that has seen multiple trickle-down effects in terms of addressing mental health, and health in general.
What do you think, Angga?
A Dwi Martha: Yes, I also agree, and I think what you’re sharing today is, yes, you’re helping people with dementia - you work for, and with them - but at the same point, you also try to bridge the connection with the government policymaking process, and the data and evidence that you have from other research, and from the health perspective itself. I think it’s truly bringing back the perspective that health is everybody’s business.
M Sigauke: I told you yesterday that we have a huge skills gap insofar as experts who might be able to deconstruct, demystify brain health and different associated conditions. So, where I’m standing, I wouldn’t be able to do my work if I don’t interact with a technical person. So, I’m seeing collaboration here with technical people, but most importantly, technical people who have a positive story to tell coming from a similar context where I come from. So, I’m definitely seeing linkages.
Are you, Angga?
A Dwi Martha: That’s totally true, and I also feel that at the Atlantic Institute, we have a lot of Fellows that have a lot of skills, not on brain health like me, but we have a lot of skills on community organising, youth engagement, running a campaign on social good, and I think that’s a skillset we can bring also to the table. And I really appreciate this connectiveness of different backgrounds and different expertise because, yes, it needs a village to move the issue, and it’s everyone to take their own parts.
R Perez: I think this is one of the most important experiences I’ve had in my whole life, so I hope to collaborate with this beautiful process of creating a network.
K Ngcobo: I am Khanyo Ngcobo. I am a psychiatrist from Durban, South Africa. Today is the last day of Walking the Talk for Dementia.
D de Jong: I’m David de Jong from The Netherlands. I’m an innovator in elder care with tech.
M Chan: My name is Melissa Chan from Singapore. I’m a service designer and Atlantic Fellow for Equity in Brain Health.
T Farombi: My name is Temitope Farombi from Nigeria. I’m a neurologist and founder of Brain Health Initiative Nigeria.
K Ngcobo: So, David, can you tell us a bit more about what work you do? We’ve seen you with your interesting gadgets.
D de Jong: So, what we have here on the table is a virtual reality headset, something you can put on your head and then have a virtual reality experience. I always compare it with putting on diving glasses, and you put your head under the water, and you can see all the fish.
We try to make impact in the lives of caregivers to, for example, show them how it is to have dementia. What we also do is train nurses, for example, how to deal with complicated behaviour of somebody with dementia, but also how to give feedback. And for people with dementia, what we do is to make videos of places they went to when they were younger, where they could go when they were younger, and now they can’t anymore.
M Chan: I’m just wondering, when you test the solutions with the users or with the people living with dementia or their carers, bringing the sensory experiences to them, what were some of the most memorable reactions that you got from them? Were they afraid at first? Did they look excited after taking off the VR headset?
D de Jong: What we see is, there’s always some people that are a little frightened to put the headset on, because you put a headset on, you don’t know what’s going on around you. That’s why the audio is also important. If we put a headset on, ideally, we also put a headphone on.
But the most beautiful thing I experienced was, there was an elderly lady who expressed that her last wish was to go to Africa, to the savannah. And one of my interns, we had a headset, and he went to the facility, and he gave her this experience of being in Africa. After the experience she got of being in Africa, she really calmed down, and she was really anxious before, because she was terminally ill. And then that evening, she passed away really peacefully, the nurses told us afterwards.
T Farombi: One of the major problems we have in Africa, it’s access to healthcare. And myself and my team were trying to create a telemedicine platform because we know that there are so many logistics visiting the hospital and the caregivers, family caregivers and the burden on them. There’s not enough time to bring them to the hospital. But with the telemedicine platform we created, or health app, you can do a virtual consultation with them in their home.
And I can see where technology is interfacing with healthcare service and delivery by bringing it closer to the people. It improves the efficiency of our services, and I think for us in Africa, where a lot of our patients, especially the elderly ones, lives in the rural community, to be able to bring the city to them, we go a long way to bridge that care access gap.
M Chan: I think it’s so amazing to see how technology is used in different continents. In Singapore, we have developed this solution called CARA. CARA stands for Community Assurance Rewards and Acceptance. It’s a solution by Dementia Singapore. It’s a community-based organisation. It’s on ground, and the whole idea is to support the safe return of people living with dementia.
So, in Singapore, with the CARA solutions, with the safe return function, members of the public can connect with family carers through a unique QR code to then initiate that contact and support the safe return of people living with dementia.
D de Jong: And you can bring it anywhere because software is not bound by borders. So, your app could be implemented in Africa. My apps and software can be downloaded in Singapore.
T Farombi: Yes.
D de Jong: Your app can be also used in rural areas –
T Farombi: It’s just software for everybody. Touch is still very important, and the family caregiver can actually be the hands of the physician in expressing touch.
K Ngcobo: It’s a resource that we can use in so many places, that we can use for training. We can decrease caregiver burden because we can train caregivers. We can help with respite. So, I think the beauty of this technology, and being able to use it in so many facets really helps with what we’re all trying to achieve. And like what you guys are saying, it can bridge borders and be accessible to a lot of people.
F Aguzzoli-Peres: I would like to invite someone really special to our group, someone that since the beginning was enthusiastic for this event. Unfortunately, he couldn’t join for the walk. But he is here, Alexandre Kalache. I could call him ‘Doctor’, ‘Professor’, but fortunately he is our friend as well, as you are all. So, Alexandre Kalache would like to say a few words, which is an honour for us. So, thank you so much for coming and for agreeing on having our closing remarks.
Prof Kalache: Thank you so much, Fernando. I know that it’s a great…
I Leroi: My name is Iracema Leroi. I’m a Professor of Geriatric Psychiatry with the Global Brain Health Institute at Trinity College, Dublin. I’m participating in an incredible event called Walk the Talk for Dementia in Santiago.
With me is Professor Kalache, former Director of Ageing at the WHO, and I wanted to ask him to share his ideas about this event.
Prof Kalache: I have been working for 48 years on ageing. It’s a long time. I have seen many events, many initiatives. This one is unique in the sense that you are bringing the people with the experience. It’s not an academic research that you interview and you have p-values and numbers and percentages. It is with emotion. And it is only with emotion that you can change things. Yes, we need evidence, we need hard science. I am an epidemiologist, I know how to measure things, but I don’t know how to measure emotions. I don’t know what makes things change.
The Camino de Santiago, there is a saying in Portuguese, which is my home language, that says that the Camino, the pathway, we can only do by walking, and we are here walking in order to bring with passion the change that is needed to turn this page of this stigma, not only in relation to Alzheimer’s, or to dementia. It’s about mental health issues altogether, combined with something very powerful, the last taboo, ageism.
I Leroi: But there’s something else that’s here as well, I believe, something that Agustin Ibanez of the Global Brain Health Institute said yesterday, “Science happens here.” What do you think about that?
Prof Kalache: I think that Agustin is right because we are incredibly arrogant, we the so-called scientists. We dismiss what is done with passion. We only think that numbers will matter. We do need them because when we reach the policymakers, you need the evidence to show, “Look, this is happening.” But also, behind that, you need to come with the colours, with the flame, with the fire that will ignite the real change that is needed.
OUTRO You’ve been listening to Walking the Talk for Dementia along the Camino in Spain. If you want to learn more about Atlantic Fellows and their work for equity, please go to our website at www.atlanticfellows.org.
I’m Fionnuala Sweeney. Thank you for listening.
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