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Podcast – Cognitive Stimulation Therapy, ISTAART Research Perspectives

There are a number of interventions that can help people living with dementia improve their memory and thinking skills and to enable them to cope better, or even slightly delay the loss of memory. In this podcast we discuss Cognitive Stimulation Therapy (CST) – an intervention which has been significantly researched and supported by a large amount of evidence.

In the second of our ISTAART Research Perspectives Specials, Global Brain Health Institute (GBHI) Fellows Fernando Peres [1] and Dr Clara Domínguez Vivero [2] talk with CST expert and researcher Dr Elisa França Resende [3] and Alzheimer’s Association Volunteer and person living with dementia Pam Montana [4]. Our two guests give two perspectives from each side of the treatment, researcher and provider and recipient and user. Exploring the research and how CST has helped to support Pam to live with the progressive symptoms of dementia.

Further Reading:

CST to Maintain Memory [5]
CST Toolkit [6]
Global Brain Health Institute [7]

For information on ISTAART Visit – www.alz.org/istaart [8]


Click here to read a full transcript of this podcast

Voice Over:

Welcome to the NIHR Dementia Researcher podcast brought to you by dementia researcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting Early Career Dementia Researchers across the world.

Fernando Peres:

Welcome to another ISTAART Research Perspectives podcast from Dementia Researcher. Which brings different perspectives on a particular research topic, including the voice of someone living with dementia and the words of a researcher.

Fernando Peres:

Several researchers believe that cognitive stimulation can help increase our cognitive reserve and reduce our risk of developing dementia. This simulation can come in many forms and shapes, in our education work and leisure activities. On our virtual coach is my co-host and dear friend Clara Dominguez. A brilliant neurologist who certainly took the concept of continuing education too seriously in taking the PhD [inaudible 00:00:59] to the long suffering final minutes.

Fernando Peres:

My name is Fernando Aguzzoli. A Brazilian journalist and a devoted grandson. And my personal interest in dementia began when my grandmother and best friend was diagnosed with Alzheimer’s, an event that completely transformed our lives and pushed me to see the world in the way I had never ever considered before.

Fernando Peres:

Aware of the impact that the disease will bring to our lives, I decided to drop out of college and quit my job to be with her until the very end. For years I heard other sayings about my grandma diagnosis, but how if she did the crosswords every day for 50 years, and that started to gain my attention. Right, Clara? Well welcome.

Dr Clara Domínguez Vivero:

Thank you, Fernando. Thank you very much for the introduction, and greeting everyone. My name is Clara Dominguez and I work as a clinical neurologist in Spain. I have a personal interest in cognitive disorders since I started studying medicine a long time ago.

Dr Clara Domínguez Vivero:

And now as a clinician, I see every day people with cognitive issues and more and more I see their families or people with a family history of dementia that come to my clinic quite worried about their brain health. And they continually ask me what they can do now to prevent future cognitive decline. So cognitive stimulation as Fernando suggested is a key factor risk reduction. So we should talk about that.

Dr Clara Domínguez Vivero:

Today we are going to connect two perspectives on this same topic. They come from very different viewpoints and backgrounds, but are nonetheless inseparable. The first from Pam Montana, who was diagnosed with younger onset Alzheimer’s disease in 2016, and then Elisa Resende, an neurologist and researcher focused on this topic. So Fernando’s going to start with the interviews.

Fernando Peres:

First of all, it’s an honor to have you on board. I’m looking forward to hearing your perspective. But I would love if you could briefly tell the audience a little about your story, Pam.

Pam Montana:

Sure, absolutely. So I worked at Intel for over 16 years and prior to that, I was always in technology. And I was managing a sales organization. And one of the things that I needed to do was to listen to what was going on with the engineers, which I’m not. And make sure that my staff knew what was going on so that they could talk to their customers about what new opportunities there were.

Pam Montana:

And so initially I would just jot down a couple of little notes. And then when in my staff meeting I would go ahead and tell them what was going on. And then as time went on and I think this started in about twenty maybe 14, I realized that I couldn’t hold the information anymore. And so when the technical folks were giving me all the information, I actually had to write down word for word what they were saying. And then that way I could share the information with my staff.

Pam Montana:

So that was like the first thing that happened to me and Alzheimer’s was never on my radar. We don’t have any Alzheimer’s in our family. And then a couple years later, my husband and I were on vacation and I asked him three times in a row where we were going to dinner. And I remember he pulled the car over and he said, “Do you know you’ve asked me that question three times?” And I said, “No.” I thought I had once and where are we going to dinner kind of a thing.

Pam Montana:

So that started us down the path of trying to figure out what was going on with me. And because I’m so verbal and chatty and just been in sales my entire life. I’m a huge extrovert. A lot of people dismissed me even when I went to my doctor, my GP to tell him that things were changing. And I told him this story I just mentioned, he said to me, “Well, you don’t look like you have Alzheimer’s.” And I was like, “Okay, I don’t know anything about Alzheimer’s what’s it supposed to look like?” So that was like a big blow to me.

Pam Montana:

But anyway long story short, then I did get directed to the neurologist and then I did get referred to UC San Francisco Memory and Aging Center. And they’re the ones that helped me. They gave me the radioactive dye and they looked at my brain and I got my diagnosis in 2016.

Fernando Peres:

Well, as you know this podcast is focused on cognitive stimulation. Can you tell us about how prior to your diagnosis, you kept cognitively active either through your education work or like my grandma for instance, did you have hobbies like crossword puzzles or literature in your life before the diagnosis?

Pam Montana:

Yeah. I’ve always been, I’ll say crafty. I’ll use that word. I always have… I’ve knitted a lot. I actually made all my clothes and clothes for my children growing up. So I am kind of, I’ll say crafty. I’m not great at it, but knitting and sewing and cross stitch and things like that. So I’ve been doing that for a while and then I’m an avid reader. So I do believe that reading, whether it’s on audible or a book, I think that that really does stimulate your brain. And then I’m super active. I’ve always been active and I like to get out and about and have traveled all over the world and like to get my body pumping. So that helps my brain.

Fernando Peres:

Well, like you said, Alzheimer’s was never in our radar actually, when my grandma started to show some symptoms and it was quite well, I would not say funny of course, but it was weird it in the beginning, because I was used to see my grandma reading all my life and doing the crosswords puzzles and well all the other activities that I believed they were protecting my grandma, as everyone was saying. They were protecting my grandma’s aging process.

Fernando Peres:

So it was quite weird. And well, you said you used to knit and my grandma tried to teach me as well, but well, I never got to learn anything. But anyway, you can try as well. I can guarantee your ass, you can try to teach me something. But well, some of my grandma’s habits and hobbies ended up running into trouble at different stages, from diagnosis to the last stage of the disease. But we always look for ways to adapt, which I think is very important. How you keep cognitively active since your diagnosis, and how are you coping with these changes in your hobbies?

Pam Montana:

Yeah, I just do what makes me happy. I mentioned that earlier about the importance of doing what you enjoy. And if it’s too difficult, I get frustrated and that’s not helpful. That’s not helpful for my brain. That’s not helpful for my mental health.

Pam Montana:

So again, I really just try to do things that work for me. And most recently I discovered the adult Paint By Number paintings. And so on Amazon here in California, I’m able to order these canvases and they give you all the paints and all of the brushes. And that’s been really cool. That’s something I’d never done before. I’m not an artist at all, but because you’re painting by number, it’s also very cognitively stimulating. You have to figure out what the color is. You have to figure out should you start at the top, should you start at the bottom? And so things like that have been really, really helpful for me. And I’ve painted over two canvases. One of them was matted and framed and in our house and another one is at my daughter’s house and I just ordered another one.

Pam Montana:

So things like that are really, really helpful for me. And I think the most important thing is that people do again, what they enjoy. If you’ve never knitted before, and you try to start knitting especially if you don’t have somebody to help you, or you’re not going to a knitting school, it’s not easy. It’s frustrating. And if you don’t know how to use a sewing machine, why would you start that? So my thing is do what interests you and that way your brain is happy, you’re happy, and make sure you just get outside and exercise.

Fernando Peres:

Yeah. It was quite hard to deal with my grandma’s frustration with some activities that were for sure changing for her. And that was quite a challenge for me because I was a teenager at the time. So I didn’t know how to cope with these changes as she was also learning. So yeah, it was quite a process for us.

Pam Montana:

But for me, the thing that’s changed the most is my executive function. And so I used to be on my computer all the time. I mean, again I worked at Intel, been in technology my entire life, and now I’m a very big fan of my phone. I was going to show you, but it doesn’t matter because this isn’t on TV. So cut that off. But anyway, now I do everything on my phone and it’s just much easier for me. I blog on it. I put all my calendar stuff in there, all kinds of things. And so that’s been something that’s kind of different for me. And some things with the executive function, I just can’t do. And I can’t give you an example right now. It’s not coming into my brain. Oh, I know one. I really can’t do math in my head anymore.

Pam Montana:

Now, granted maybe some people never did math, but I was able to do math in my head. And I also have a pretty bad short term memory. So whenever I’m having a conversation with somebody where they’re talking about something that’s important for me to know, like when are you coming home, or when are we going to lunch, I have to write it all down. And again, I put it in my phone and I put it in another hard calendar that’s up on the wall. So those are some modifications that I’ve used that have been really, really helpful and keeps me still active in doing things that I can do.

Fernando Peres:

Oh, fantastic. You managed to adapt. And I think it’s all about that, right?

Pam Montana:

Yeah, absolutely.

Fernando Peres:

Well, I always go to sleep swearing that next week I will learn Italian, French, maybe programming or a music instrument, but, well, let’s say that just nothing yet. And can you give an advice for trying something new? Because I think a lot of people that are hearing now whether diagnosed or not, they are considering trying something new. And can you give some advice for us?

Pam Montana:

Yeah, I think I kind of talked about it earlier. I think it’s do what makes you happy, do what you enjoy. If you want to learn to knit, there’s a lot of ways to learn to knit, but if you don’t have any artsy, crafty stuff, that’s fine. There’s so many other things you can do. I mean, I can’t give you an example, but maybe you want to learn how to play football or something. I don’t know. Just anything that’s different from your normal routine and anything that you enjoy. Don’t let somebody push it on you. Don’t let them say, “Oh you should do crossword puzzles.” Well, I don’t do crossword puzzles. I don’t like them. I’ve never done them. So there’s no way I would ever do one of those because it would be too frustrating for me and that’s not healthy for my brain. I need stuff that brings good energy to my head and to my brain.

Fernando Peres:

Well, that’s absolutely great. So don’t take people’s opinion too seriously that makes you try something that you don’t want.

Pam Montana:

Yeah, yeah. Why would you do a puzzle if you hate puzzles just because someone’s told you it was going to be good for you? Make cookies. Cook, clean. I don’t know. There’s so many options that just, again, depend out where you live and what you enjoy. You got to just dig deep in your heart and decide what’s going to work for you.

Fernando Peres:

Exactly. That’s great. Yeah. I’m not learning Spanish, Clara. I’m trying something that I like. I will try Italian.

Pam Montana:

Oh God, I tried so hard. I tried Spanish so many times. I cannot… I mean, do a lingo, I’ve done it all. Nevermind, it wasn’t doing good things in my brain because I was getting frustrated, and then that’s not really healthy. So I said no more Spanish.

Fernando Peres:

I am with you on that. And just to finish here, Pam, any message for Early Career Researchers that you can give.

Pam Montana:

Gosh, researchers. Well just please keep all of the clinical trials going, please keep working. I just finished my second clinical trial at UCSF. And I’m just so honored to be part of that because I know I’m going to be part of the cure. I think you guys are the smarty pants and we’re not. So just keep pushing. And I know that some point in time we will find a cure. I know there are some things that I know that I’m doing that are helping me slow down.

Pam Montana:

So without a cure, I’m just really banking on steps of doing what makes me happy every single day. And I have a very strong faith and attitude. I’m super happy and friendly and all that other kind of stuff. And that’s really important. So if you’re in a relationship or if you’re around people that are bringing you down, you need some new friends. It is not helpful at all whatsoever. All of that stuff really makes an impact on your brain and on your body, and on your mood, and everything else.

Fernando Peres:

Well, Pam thank you so much for sharing your story with us and telling your personal perspective. That’s so, so important for all of us working with the disease. So thank you very much. Clara, over to you.

Dr Clara Domínguez Vivero:

Thank you so much Pam. It was amazing hearing your story, and thank you Fernando. And talking about research and funding and your researchers. Many researchers have explored the possibility or the fact that people who are cognitively active, whether it’s through education, work or leisure have a lower risk of developing Alzheimer’s disease.

Dr Clara Domínguez Vivero:

So there’s still [inaudible 00:15:37] regarding what types of activities are important. They are important and how we can actually translate this research findings into our communities and our daily lives.

Dr Clara Domínguez Vivero:

So thank you so much Dr. Resende for joining today. I am sure our audience is eager to hear your opinion on this topic, your expert opinion, where there is still much discussion among researchers. So we are eager to hear you. So just for starters, so could you tell us about your research. What is it about?

Dr Elisa França Resende:

We are trying to understand whether or not illiterate adults, or people who didn’t have the opportunity to study and to go to a school when they were young, whether they can improve their cognitive reserve when they are older adults. So the idea is that it’s never too late to engage in cognitively stimulating activities. And one cognitively stimulating activity is going to a school. We know that all of us we went to a school for 12 years. I mean, we went for 20 or 25, but most of people go to school for 12 years. And this is very important for your brain to increase your connectivity, to improve your memory, to improve your math skills, your executive function and everything. But some people, they didn’t have this opportunity because they had to work. They worked in rural areas and they didn’t have the stimulus from their parents and they lived in slow socioeconomic areas. So they couldn’t.

Dr Elisa França Resende:

And now they are those other adults that are illiterate. And we believe that if you learn how to read and write, when you are an adult, an older adult, you can improve your cognitive reserve. So that’s what we are trying to prove now. So we are looking at those illiterate adults. They are going to school, learning to read how to read and write. And we are looking at the brains, and then we are looking at their memory, and then we hope to see that with school later in life your memory improves and your connections in your brain improves. And that connect as a buffer to avoid the symptoms of Alzheimer’s and dementia to start earlier, let’s say, and then to avoid at least part of the dementia in those vulnerable populations.

Dr Clara Domínguez Vivero:

Well, that’s amazing. And I’m also sure, because I know some of my patients do that. That they also enjoy, have fun and make new friends, which is also important. So great research. Congratulations.

Dr Elisa França Resende:

Thank you.

Dr Clara Domínguez Vivero:

And I think people will be really interested in knowing this. What type of cognitively stimulating activities as far as you know, having associated with a reduced risk of Alzheimer’s disease and dementia?

Dr Elisa França Resende:

So we know that as Fernando mentioned, as Pam mentioned, you can do crosswords your whole life. You can work in a very high level job, but you still can have Alzheimer’s. So the cognitively stimulating activities, it can prevent but it’s only 40% or 30% of the cases. It’s not only, but it’s not everything. And also it can delay the onset of the disease. So it can delay up to eight years the onset of the disease.

Dr Elisa França Resende:

But there is no specific activity. So any activity is good. What we know is that specific training it’s not helpful, for example, memory training or those exercises that you do on computer. So those repetitive exercises, they’re not helpful. But any other cognitive stimulating activity like reading, knitting, playing cards, we do a lot in Brazil, and going out and traveling. Being socially active, those activities are proved to be helpful for avoiding at least part of the Alzheimer’s disease and the major cases.

Dr Clara Domínguez Vivero:

Great. So fun stuff. Not sitting on a computer, just doing repetitive stuff. That’s great news. And which are according to you that so everybody can understand, but the biological mechanisms behind this. So why does this work?

Dr Elisa França Resende:

Yeah, so the biological mechanisms of what we call cognitive reserve, which is this buffer we get when we do a lot of cognitively stimulating activities in our whole life. And then we have more brain [inaudible 00:20:40] let’s say when the disease comes.

Dr Elisa França Resende:

So the biological mechanisms are not fully understood yet. A lot of workers… A lot of researchers are working on that in the world. But some possibilities, some hypothesis are that for example, people who have a high level of education, a high level of occupation skills, their brains work different. They have different connections. For example, when they’re doing a memory task, different parts of the brain connects with each other, whereas a person who is in a low life of educational, for example. Another parts of the brain connect during that activity. And we think that, for example, the difference in connectivity. So how two parts of the brain speaks with each other, maybe it’s like more resistant to the disease. So when the plaques and the tangles come from the Alzheimer disease, for example, it can affect one region. And the person has another region that is working still.

Dr Elisa França Resende:

This is one. And the other possibilities that people who are cognitively active, they hold alive from children. They keep growing neurons in regions, for example, the hippocampus. So we know that hippocampus can generate new neurons even in adulthood. This is another hypothesis. But all the hypothesis are very hard to prove. And those are only things that we study because it’s difficult for example, to study a person in the childhood and then see the same person in the adulthood. So those are associations we see in research, but it’s hard to prove the causation.

Dr Clara Domínguez Vivero:

Very long follow up. The whole life. And then when I see studies about this topic on cognitive reserve, I always wonder how can you say for sure that it is the cognitive activity and cognitive simulation and it is not all the other things that are normally associated with that? What I mean is that normally people that has more cognitive demanding jobs, that have the opportunity to remain more engaged, have hobbies, be more social, they normally also have maybe a higher income, more opportunities, different nutrition. So how can you tell if it’s one thing or the other?

Dr Elisa França Resende:

Yeah. It’s not only you that asks that question. Every researcher asks that question, and there is no answer. I mean, there is no way to separate those out. Usually they come together. Low socioeconomic status, poor nutritional status, and low income, and low education, and a lower level of occupation. So they have all together and it’s impossible to separate in research because we are not going to manipulate those factors, it’s impossible.

Dr Elisa França Resende:

What we can do is like to look at the same level of social economic status, for example. And some people have a higher level of education because they manage to overcome their difficulties when they were young, and then we can see differences. But it’s very difficult to tell. And every time I present my results and I see people talking or the researchers talking about this team, we always get the same question. How you separate out. We can’t.

Dr Elisa França Resende:

So we are just studying everything. And we used to say that literacy or education, occupation, they are proxies of everything that happened in your brain. Low socioeconomic, like trauma and difficulties in the child. They present as like occupation, a higher occupational level or something like that, or low occupational level. And then this is the way we can measure this in research. But it’s very difficult to separate.

Dr Clara Domínguez Vivero:

Yeah. Totally agree. And yeah, a little bit really related with that. I actually work, as I said in Spain, but it’s a rural area. So the most part of my patients they don’t have a high cultural level as we understand that. They don’t have a high… They don’t read a lot. They are not pencil and paper people. But when you talk to them, they have a huge knowledge, for example, regarding farming or plants or traditional culture. So I wonder all the time, does this type of knowledge also count to prevent cognitive impairment?

Dr Elisa França Resende:

Yes, for sure it counts. But it’s very hard to measure in research. So again, it’s difficult to prove in research that kind of knowledge like avoiding the risk of Alzheimer disease, let’s say. What we can do is for example, there are some work like in blue zones. I don’t know if you heard about that. So blue zones are regions in the world that the rates of Alzheimer’s disease is very low.

Dr Elisa França Resende:

And some of those zones, they have a lot of knowledge that is not paper and pencil. And that counts for sure, but it’s hard to measure in research such that it’s hard to prove and to say how much, and it’s hard to base on. So for example, if you’re going to do an intervention and how you going to say you can go to those regions and learn all that. But it’s hard to plan an intervention to use that to prevent Alzheimer disease. You know what I mean? So it’s easier for example, to increase the level of formal education if the level is low. But it for sure count, but it’s hard to measure and to prove it in research.

Dr Clara Domínguez Vivero:

Okay. So I guess it is kind of knowledge that is underrepresented in research, right?

Dr Elisa França Resende:

For sure, for sure.

Dr Clara Domínguez Vivero:

Yeah. And I think we are coming to an end, but I wouldn’t like to finish this without asking you just also for particular interest in my case, if there is any particular age in which is very important to remain cognitively active, or is it also useful to do it later in life? I mean, I’m just asking if it’s never too late or we should do it earlier.

Dr Elisa França Resende:

Pam Montana said you should always stay active, no matter the age you are. And after the cognitive impairment has started, it’s even more important. So there is no particular age. Since you are a child and then [inaudible 00:27:58] hold in your occupation, your leisure activities. And then when you are old, keeping doing what voluntary work and keeping active. And then of course when the cognitive impairments start, because it keeps your mind working like Pam said. And so there is some research showing that people who are retired, they have higher rates of Alzheimer disease. So it’s important to keep active all the time, your whole life.

Dr Clara Domínguez Vivero:

Okay. So we can never stop working. Right?

Dr Elisa França Resende:

Sure. [crosstalk 00:28:33]. Always studying and working

Dr Clara Domínguez Vivero:

Well, thank you very much for joining us today everyone. I think this has been eye opening. And I think most of us will start tomorrow, at least me. Try to engage in more cognitive activities. Actually, I think I will go for the number painting. I think that must be super relaxing as well. I don’t know about you guys, but well, thank you for joining and thank you to all our listeners

Voice Over:

Brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK Alzheimer’s Society, supporting Early Career Dementia Researchers across the world.

END


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