The Dementia Podcast

Talking Dementia: Diagnosis and Post-Diagnostic Care

Professor Colm Cunningham

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On this episode of the Dementia Podcast, Colm chats with three members of the COGNISANCE project, Bill Yeates, Dr Dorota Szcześniak & return guest Dr Meredith Gresham. Together they chat with Colm about current problems with the way a dementia diagnosis is communicated and support people with dementia and carers afterwards, as well as how the project has developed accessible online resources to better support people with dementia, carers and health care professionals.  

In the episode Bill shares his experience of receiving his diagnosis and the road to finding a way forward. Bill is a member of the co-designed COGNISANCE project– an international program that comprises a group of passionate individuals trying to reduce the stigma surrounding dementia and provide practical pathways for post-diagnostic care.  

The podcast coincides with the launch of the Forward with Dementia website, which aims to be an international guide to living well in the first year after diagnosis, and includes regular newsletters and a growing bank of important resources. 

If you’d like to hear more about our Talking Dementia series we’d love for you to have a listen of one of our previous episodes and the introduction to the series, Talking Dementia: What is Dementia with Steve Macfarlane and Holly Markwell.

Bill Yeates:

I'm not embarrassed to say that I was completely devastated when I received the diagnosis that I had younger onset Alzheimer's disease. As my doctor explained to me about the progressive nature of this disease, I realized that my life as I knew it was now completely shattered. All the goals, milestones and ambitions that my wife Nicole, and I had set for our family were now gone. Although my family and friends were supportive, I still felt completely alone, as I couldn't find any information that would guide or show me how to fight this disease. As a result, I remember becoming lost in my own thoughts. I started to feel sorry for myself. I felt that there was a huge weight on my shoulders. Because I didn't know what the future held for me and my family. Nor did I know how long I had before I would become too much of a burden for everyone. I don't believe that I processed my diagnosis well. I was scared. And there was no matter where I looked, I couldn't find a pathway that would lead me away from the darkness that was surrounding.

Colm Cunningham:

Hello to you. You've just heard from Bill Yeates. One of our guests today. As we're talking about diagnosis, and the post diagnostic support needs of people with dementia and their care partners. The power of Bill's words will certainly shape this episode. As like me you will hear in every word how he's prepared and considered his message for us today in this podcast. This episode of the Dementia Podcast will reflect both the obstacles and messages of living positively that Bill has ensured are part of this conversation. Joining Bill as we straddle the time zones of Poland and Australia and myself here in Scotland are from Australia, Dr. Meredith Gresham, an occupational therapist, who was our first guest of 2022 when she talked about her research into bidets and continence support and from Poland, psychologist Dorota Szczeniak and with Bill they are three of the members of an international project "Cognisance", which comprises of a group of passionate people committed to reducing stigma, and getting the message out there that it's possible to live a full and meaningful life after diagnosis. In addition to Australia and Poland, Cognisance partnership includes the UK, the Netherlands, and both the French and English parts of Canada. In 2022, you would think that diagnostic support for people with dementia would be well established. But drawing on data from Alzheimer's Disease International in low and middle income countries, as few as 10% of people affected actually get a diagnosis. And even in those higher income countries, that's only sitting at around 50%. But Cognisance are determined to change that. Together, they are campaigning to give people with dementia and their families, as well as health professionals, the information resources and tools as well as practical actions they need to help people receiving a diagnosis. So in this edition of the Dementia Podcast, we've got even more resources packed into our show notes. Bill, welcome. That was a very honest reflection, we heard from you at the start. At the time, did you get any formal support after you receive that diagnosis?

Bill Yeates:

I initially thought I did. But I realized now that I didn't. It was basically look, here's your diagnosis, I'm really sorry, you really need to just go home and get your affairs in order. There's nothing you can do. It's incurable. And I'll come back in a couple of months time and we'll just see how you're progressing. So I remember sort of walking out going Yeah, I was sort of comfortable with that. And then through my own research other really learnt about this disease, I realized I'm going to say to you no. That's what was lacking. There was wasn't any form of support after my diagnosis.

Colm Cunningham:

And do you mind me asking, were you alone when you received your diagnosis?

Bill Yeates:

The doctor was really good. With me, um, she insisted that my wife came. And I think that was a really important factor. Because obviously the nature of the disease itself. It was I was shell shocked when I got it even I sort of expected it anyway. Everything else after that was really a blur

Colm Cunningham:

Well thank you so much for sharing that because I know it's not easy and not everybody's willing to share their story. So I really appreciate you giving us that stark reality. And Meredith, I'd love to therefore hear from you. What the research is telling us is happening in terms of diagnosis and what you find in Australia? And am I being too gloomy to say that those stories seems to be typical?

Meredith Gresham:

Unfortunately, you are correct. Our formative research for the cognizance project just endorsed what was in the literature already. And that is to say that bill's experience is absolutely not unusual. There are pockets where the diagnostic experience is better. But by and large, I don't think we're doing all that well. Everybody, almost everybody we interviewed said the diagnosis was a real shock. Even if they were expecting the diagnosis. Most people told us that they didn't hear anything in the diagnostic interview, after they heard that word dementia. And the majority, around about three quarters of the folk we interviewed said that they never received a plan of care. They left the diagnostic interview with nothing in their hand, no real sense of where to go, or what to do next.

Colm Cunningham:

And Meredith the bit that sort of really surprises me about that is take the word dementia out of this for a second, you would expect that with anybody sitting down being given a diagnosis that there would be information provided to them on the pathway, add dementia on top of that. And to Bill's point, you know, he's processing a diagnosis, but that diagnosis as he was making the point there is also about his memory being challenged so surely we should. Actually the effort on information, leaflets and follow up should be practically double the norm.

Meredith Gresham:

I agree wholeheartedly. Couple of things that our people told us. The first is they wanted to leave with some paper in their hand some basic information. Very few people receive that at the point of diagnosis. To that end we develop with diagnosticians. A patient information leaflet takes the doctor less than a minute to fill it out. It writes down the diagnosis. Importantly, it writes down what the follow up is going to be because people said it took them a while to process the shock. But a week or two weeks or a month, late month later, their head was just full of questions, that there was no way to go to find answers to those questions,

Colm Cunningham:

Dorota is that the experience in Poland or is diagnosis and pathway handled differently there?

Dorota Szczeniak:

Unfortunately, I think that in Poland, we are not even there. So it seems that the biggest challenge for people in Poland is getting a diagnosis in a timely manner. People seek help, but it is too late. Often when the symptoms of the dementia are covered by other self destruct life disruptive symptoms like depressive or behavioral and according to our experience, it may be the consequences of two things. On the one hand, it is the belief that cognitive impairment is a part of the normal aging process. On the other the thinking that once we recognize dementia, there is nothing we can do with it. So this is why people do not take some actions to not seek help. Besides, the word dementia itself, is very stigmatized in Poland. It is associated negatively and cause rather negative emotions such as fear or helplessness. And this unfortunately applies to both people living with dementia but also to their care partners

Colm Cunningham:

So for you then Poland and Meredith I'd love to hear from you in terms of Australia. What do support to people with dementia have families with a diagnosis need? What are the things you've identified?

Dorota Szczeniak:

So in Poland, it is something which is very hard because as Meredith said, even we are having some guidelines or some standards, but which are more related to research. There is not practical information. And there is nothing that no institution that can coordinate the guidelines and the actions for people So people are seeking for help by themselves many times in GP psychologist psychiatrist, but it is very fragmented. This is what we have what is our challenge. And we hope that our Cognisance project will put a nice overview and the first step to do something for people in Poland.

Colm Cunningham:

And what about in Australia Meredith?

Meredith Gresham:

In terms of support, there is support out there. And the people we have spoken to throughout the project, eventually managed to find support. But often they had to do it themselves, they had to rely on family, they had to rely on friends, they had to do Google searching. A lot of people came to getting support through a number of different ways. So yes, there is support out there, it becomes more difficult in regional and rural areas to find, actually face to face support. There's a lot of negativity around getting support from the general practitioner, people feel, often GPs just don't have the breadth of knowledge or expertise to find that information. But there is there is good evidence to say that good support from the point of diagnosis is really helpful, and can set people on a very different trajectory. So build talked about going into a dark space. And that I think is so common, we know that depression, or being anxious about the future, only compounds symptoms of dementia. So it's so important that that support start from how the diagnosis is communicated that the doctor give the person some hope that yes, we don't have a cure. But there are many things you can do to improve your quality of life, and how you live your life, to live a meaningful and positive life.

Colm Cunningham:

And I just Bill asked you, how easy was it for you to find information? Meredith has just mapped out some of what you what you should have experienced. But did you have to go to Mr. Google? Or did did information start to come?

Bill Yeates:

So I went on a personal search, I searched the web, I learned whatever I could about dementia and Alzheimer's disease, its causes its risk factors, all the different stages. But I couldn't find any information on devising a plan on how best to manage this disease. And that's for me, that was the real void. And when you spoke earlier about the formal support, I had my family and my friends around me. But what I was really looking for was something, some information to tell me Look, Bill, if you went and did this, and you change these in your lifestyle, you're going to give yourself a better chance. And I found that really difficult. I just and I was getting frustrated because I just couldn't find it. And for me, that's why the website"Moving Forward With Dementia" is a really good thing. It's user friendly. It's easy to navigate. And suddenly, I was able to access the information that I was looking for. And from my perspective, that was really important. I think one of the best things that I've encountered is meeting inspirational people. And I say that in such ways that they give you a light, they give you a pathway on how to deal with this disease. And it's like, if I see and read about a person who's done X, then I think, wow, I can do that. And likewise, when you meet people like Meredith and Dorota, I get the same sense of feeling that, you know, we're in good hands. We've got people out there who care so much that they're doing the best they can

Colm Cunningham:

Bill can I say, that you know, I've had the privilege to have a few people with a diagnosis on the podcast. That To be honest, while it's really nice to say and I've no doubts it's absolutely true about both of the other guests. To be honest, it is people like you that actually help us shape the next direction because without your voice. We actually could get quite lost. And I suppose that's one of the things that I've been in reading about what you've been doing and the fact that it is being co designed. Gives me a lot of comfort about where it started and I guess Dorota to, it's also quite unusual for me to read that this truly is international because often we talk about that, but I've just listed off at the start five countries. So how did Poland end up in this journey?

Dorota Szczeniak:

So the most important thing is to mention that the core design process was already developed at the international level. Therefore, from our very first moment of creating the website, but also the campaign, the voice of each country was very important. So from the beginning, we did it together, of course, there are differences. So the the most important difference is the language. And we are having different versions of the language of the website. This is the Polish one, the Australian two versions of the Canadian website, French and English, but also the Dutch and the UK. And you can visit them, they are accessible through the internet international landing page. So the language is the first difference. However, the content also differ in each country. And it is related to country the differences like for example, the community service, which is available in each country, but also the difference in health systems legal and financial systems that make the difference what we are talking about in the website, because what is very important is that everything, which is the content must be very practical. And that's why we have to adopt all this information. So this is something which is very important that everything is adopted to the country, but also regional context,

Colm Cunningham:

I imagine you've had a few experiences in this co-design of really informed where you have landed.

Meredith Gresham:

Absolutely. In this project, we've had five countries as you've already told us involved. Each country has its own co-design group. And co-design simply means that you bring together a group of people who will be end users of a product, or information or knowledge. And they contribute to what that end product will actually look like. Our website and our campaign actually speaks to directly to people living with a diagnosis of dementia, to families and carers and to healthcare professionals who work with people with dementia. So in each country, there was a group of those three different, different people. So in Australia, we had a group of nearly 25 people, health professionals from speech pathologists, to diversional, therapist to medical receptionist, to specialists, and GPs as well as importantly people living with dementia and care partners. And we had lively many very lively debates about what the website should look like, what the content should be like, how it should be couched, what people wanted to know. And combining that richness and that diversity of opinion, I have to say was extremely challenging, but a very useful process to hopefully make something that will work for the majority

Colm Cunningham:

I believe another thing that came out of this was practical actions. Meredith, what does that mean, in terms of the website?

Meredith Gresham:

Let me just go back one or two steps, the website speaks to three different groups of people and it's hard to bring together something that's coherent talking to so many different people. So the website consists of three sections one for people living with dementia, one for carers, and one for health professionals, and they're written in slightly different ways. Within each of those three sections. The core of the website are short, pithy articles, on the topics that people told us were most important to have information about immediately following a diagnosis. At the end of each of those articles, what we've done which is, I think, unique, there are practical actions to take. So for example, a big ticket item was driving. Driving after diagnosis. So the article discusses the impact of driving continuing to drive or giving up driving from the perspective of the person with dementia and the carer. But at the bottom are specific links to a driving decision aid which will help people to actually make a decision about whether it is right to give up driving or not at this point with them, and the practical things they need to do. For example, you need to tell your insurance company. Otherwise, if you do have an accident, your insurance may be void. Another thing that our co-design group told us is not everybody wants to read articles, even if they're short. Some people and Bill, you said this beautifully earlier that hearing people's stories can sometimes be very powerful. somebody with dementia says, I did this and it provides a role model something can follow. So as well, we include personal stories of real people, and how they are coping and how they are living as well as they possibly can. We also include topical news items. So it's designed as Dorota said to be a really practical website, that people can pick and choose what topics they need to know about at a particular point in time

Colm Cunningham:

Dorota are there stories, Does that ring a bell with stories from your point of view?

Dorota Szczeniak:

Yes, I wanted to only to add to the stories Meredith just said, because in Poland, it was also something very important for people that they want to hear about other experience and the voice of other people. However, I must said that it is actually a challenge to ask people to be a part of the story. And this could be related to taboo in Poland, and that the people are many times afraid of the stigma, but also ashamed of having dementia. So this is something which we experienced that for the other users. They want to explore it, but there's not the the openness on talking about their experience is very, something very hard for them.

Colm Cunningham:

Bill, have you experienced that stigma?

Bill Yeates:

Look. Definitely yeah, it's a stigma, which, in some sense, starts with yourself, in the sense that I know I'm and I recall, I was so embarrassed. It took me a long time before I'd actually tell people, but sure, my family and friends knew. But for me to tell someone that was huge. And I just didn't do it, I backed off. And then and I think a lot of it came from my uncertainty. And also from my observations that the community itself attaches. It's like, these people have got dementia probably need to just move them over here a little bit, whatever, you're sort of not included. You know, I've always lived a life where I like a inclusive, not an exclusive society. And I on it, sadly, to say, like I grew up on the beaches. So I'm a volunteer surf lifesaver, and are there to experience I had a fantastic when I got my diagnosis, I walked away from Surf Lifesaving, and when I came back, I decided to come back all my friends were with me, they swam with me, they got me past the post. And suddenly I was surrounded by all these people who were really supportive. But that's not everyone. That was my patrol, and everyone was fantastic. And then I came across people who, sadly were in the club. And they were just wow hold on, you cannot, you can't say that you can't do that you can't pick on people with disabilities. And so that's where I sort of become an advocate. And it opened my eyes up. And now I see a lot more of it, that it is definitely there. And it needs to be broken down. And people need to understand, yes, it is a disease. But we're not lepers, you've got to be part of the society, we need to have a rehabilitation plan. Now there are things that you can do, to move yourself back into society and I'm doing them. It's not just, it's like a give and take situation. A lot of it's going to come from you. You've got to be able to stand up and say, look, hey, accept my diagnosis. And I think that's always the first step you've got to accept it

Colm Cunningham:

Is that what living positively is for you, which is being treated as a citizen and living your life with a diagnosis?

Bill Yeates:

It's probably more than that Colm. Can I reflect back on something my father taught me? And I suppose to me, it's always been very much a guiding point. My father taught me that everyone in this world faces adversity, and you stumble and sometimes you fall, but what settles what makes you different from everyone else is what you do when you stand up. So from my perspective, it took me many months and I spoke before about, you know, I was just I was embarrassed at times I didn't tell anyone. But eventually when I come to grips with what, what had occurred, I stood up and I reflect back to a life changing experience. A group of my friends took me to Japan. And I thought it was like my last hurrah. Like Americans talk about if this can be your last trip overseas. And that's, that was the darkness around me at that time. But it was really interesting. I had such a great time. It left me with the catalyst that I needed, that I did value life. And what was more important to me was that my family and friends became aware that I was willing to fight this disease. And I say that in such a way it had to be through my own thoughts and words and actions. I wanted to see this person who was willing to fight for a better life.

Colm Cunningham:

Thank you for that Bill. So this is obviously a very important point as you move from all of the important work that co-design and partnering together, but it's only the start is what I understand. So Dorota and then Meredith, could you perhaps share what next? What does a campaign around all you've learnt look like?

Dorota Szczeniak:

Yes, the website is only the product. However, we must tell to people that Hello, we are having it. And now you can go there and look for help and for some support. And to do this, we also could design social campaigns in each country. And they differ. And they are also adopted to our our social contexts, our resources and our ideas. I think in Poland, our campaign is very diverse. And our main goal is to raise the awareness that people will seek for for help and go to the doctors and to the website early enough people can see that campaign in the city. So we have a city bus with a huge log of forward with dementia that is going around the city. And it is travelling for four months from September. But also we will organize a music concert, we are organizing different webinars in each two weeks. And we are having a very nice exhibition of our work of artists who has a diagnosis of early onset of dementia. And this exhibition is around the city and main railway station. After two weeks in a city square, after two weeks in main university building, in main University, hospital, and so on. So the stories about the forward with dementia and campaign are very accessible. So our around the road swap. And I think that this is the first time that people are talking about dementia on the street. So this is something we are very proud of.

Colm Cunningham:

Wow. That's incredible. I want to come. Meredith, what's your take on how you this campaign goes?

Meredith Gresham:

We've got a slightly different campaign, given that the context in Australia is quite different to Poland. And we have a two pronged campaign. The first is really contacting the diagnosticians, the psychiatrists, psycho-geriatricians, the geriatricians and the neurologist, to say that the way in which we need to deliver a diagnosis has to change, the way in which people are followed up has to change. That's actually been, I guess, the easier part of the campaign is contacting the societies and organizations where these diagnosticians will receive their information from. To that end, we've run a couple of very successful webinars, which are available on YouTube viewing any time. We've provided resources in particular, we've produced again, co-designed with diagnosticians, a diagnostic checklist. So what are all of the elements that a diagnostician needs to have thought through in delivering a diagnosis and again, those resources are available for free download on the website. The second part of our campaign through COVID has been much more difficult. And that is reaching the consumers. People who have been recently diagnosed who are currently seeking a diagnosis and families. We've been working with Dementia Australia, we've been talking to those health professionals who will work with people who have been recently diagnosed And let me tell you they are relatively few and far between, but seeking them out and boosting their capacity to deliver practical information that people living with dementia and families have told us that they need. Again, we're publishing in health professional magazines, for example, an article went out through the Pharmacy Guild, in their magazine Forefront, to say pharmacists can actually put this information out there. So when they deliver a prescription of one of the anti dementia drugs, they can give information for people at the same time. So campaigns are somewhat different. They're different all the way around the world. But the idea is that, as Darla said, it's about getting the message out there into the community, that there are things you can do, and it is possible to live as well as you can.

Colm Cunningham:

And to start with if I'm listening now. And obviously, we'll put links forwardwithdementia.org. Is that the main starting point for anybody listening?

Meredith Gresham:

That's correct. Dorota mentioned, that's the international landing page, you can click on the language or the country, and then access the country website.

Colm Cunningham:

Fantastic. I'm already looking at it. And it is very easy to navigate, I have to admit, I found but the amount of people who've been involved, it's an incredible undertaking as well. So I mean, that's something that's got to be commended a lot of energy, love and passion has gone into this project. Bill. Can I ask you, as we come to a close, there's lots of advice that is going to be available through this website, and through all the work that everybody's talked about today. But what's your final word on advice to give to somebody who's listening who has a diagnosis, or their family member who might be listening today?

Bill Yeates:

I used to consider that when I got my diagnosis, it was the end, end of my life and everything that I'd worked towards, and now realize that that's actually not true. It's really what's the beginning. And I say that in such a way that provided you're willing to open your eyes up, you're willing to accept the diagnosis for what it is, you need to take a step forward, and change your life if you change your life. And everyone's different as to how you can change your life. I do dietary, and I do exercises, and they're all very, very important. But the important thing is what you do when you suddenly realize that you're starting to do things that you might have dreamt of, or never even thought of. There's for me, there was a domino effect that as I started to change things in my life, I realized that I was actually making headway. I was moving away from my darkness into a much positive area. And we've spoken a lot about a positive attitude to life, and I'm fully on the page with it. It's what sort of energizes me, but don't want to think too much about my diagnosis. It's more about me thinking about what I can do each day of my life, what can I achieve? And I find that I'm now doing things that I never thought I would. I never considered myself much of an advocate. But I actually really enjoy it. And I'm opening up parts of my life and parts of my personality, which is very exciting. And I think one of the most important things to do is that with your diagnosis there is that period of time where you have to process it. And once you get past that stage, and you plan your life, and you feel that yes, you are fighting this disease, then I think you are on the way to living a better life, your quality of life will be better. And I think that's the message I'd like to say out to everyone. I think the whole concept of positivity is really, really important and shouldn't be misjudged. Because it's your mindset. It's what gets me up in the morning to give put a smile on my face.

Colm Cunningham:

Thanks to Meredith, Bill and Dorota for joining me on this episode. You can find out more about Cognisance in the show notes with links to the website Forward With Dementia. As mentioned there are resources for people with dementia, carers and health professionals. And thank you our listeners for joining us for another episode of the Dementia Podcast. If you have any questions, comments or feedback, we'd love to hear from you via our email hello@dementiacentre.com Bye for now