ATLANTIC INSTITUTE | WALKING THE TALK FOR DEMENTIA
CONVERSATIONS ALONG THE CAMINO | PART 01

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.

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 13^th 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.

OUTRO Walking the Talk for Dementia continues in Episode 2.  I’m Fionnuala Sweeney.  Thank you for listening.

ENDS | DURATION 28’ 02

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