- DEMENTIA RESEARCHER - https://www.dementiaresearcher.nihr.ac.uk -

Podcast – Alzheimer Europe 2022 Conference Roundup

Last week Adam Smith [1] attended the 32nd Alzheimer Europe Conference in Bucharest, Romania. In this podcast Adam and his guests bring you highlights from the discussion and an informal chat around some of the issues being explored on the agenda.

This week’s guests are husband and wife team – Chris Roberts [2], Chair of the European Working Group of People with Dementia, Jayne Goodrick, Dementia Carers Count Advisory Member. We also have three fantastic early career researchers, Dr Joni Gilissen [3] & Charlèss Dupont [4] from Vrije Universiteit Brussel and Simone Felding [5] from DZNE, German Center for Neurodegenerative Diseases.

In this great show we not only get the highlights from our researchers, but we have the privilege of getting first-hand commentary from Chris and Jane, whose personal experience of living with dementia and its impact on their lives, provides a unique, thought provoking, often moving, and essential perspective.

This year’s conference was held under the motto “Building bridges”. As in previous years, this conference is one of the few in the diary that provides a great networking opportunity which brings together people with dementia, their carers, volunteers and staff of Alzheimer associations, policy makers, health and social care professionals, researchers, academics and industry representatives from all over Europe and beyond. It received over 300 abstracts for oral and poster presentations covering a broad range of topics, from fundamental science to care, diagnosis, policies, interventions, treatments and more.

Links discussed in the show:

Conference Website – bit.ly/3gm4eTo [6]
Conference hashtag – bit.ly/3Sn4ezT [7]
Alzheimer Europe Reports – bit.ly/3Srxo0V [8]
INTERDEM World Café 5th December 2022 – bit.ly/3Ttj9dk [9]


Click here to read a full transcript of this podcast

Voice Over:

Welcome to the NIHR Dementia Researcher Podcast, brought to you by Dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research U.K. and Alzheimer’s Society, supporting early career dementia researchers across the world.

Adam Smith:

Hello, and welcome to the Dementia Researcher Podcast on location from the Alzheimer Europe Conference, which this year is taking place in Bucharest, in the heart of Romania. I’m Adam Smith, and today I have the pleasure of hosting this special podcast to share our highlights from this brilliant three-day conference. Don’t worry, I’m not here alone. I have five wonderful guests who have all been taking detailed and copious notes over the last few days to give you a comprehensive essay. You have all been taking detailed notes, right?

Jayne Goodrick:

Yeah, absolutely.

Chris Roberts:

Of course.

Adam Smith:

Well, as this is one of the few research conferences where we actually have people living with dementia attending, I’m delighted to introduce the first of our two guests who can represent those attendees. We have Chris Roberts and Jayne Goodrick. Hello.

Chris Roberts:

Hello.

Jayne Goodrick:

Hiya.

Adam Smith:

Next, we come to the researchers, and we have the incredible Dr. Joni Gilissen. We have the wonderful Charlèss DuPont and the amazing Simone Felding. Thank you ever so much everybody for joining us today, so let’s start by going around the microphones and getting some introductions. Chris and Jane, Chris, why don’t you go first?

Chris Roberts:

Yeah. I’m Chris Roberts. I’m chair of the European working Group with people with dementia and I live in North Wales, in the U.K. I’m living with dementia myself, mixed dementia. Firstly, diagnosed with vascular and then later on with Alzheimer’s as well, but seeing how I’m also living with emphysema or lung disease. My wife just said I’m greedy.

Adam Smith:

Well, we laugh, but I mean it’s very serious, of course. Out of thought, just out of interest, out of all those problems that you have to live with each day, which one do you think affects you the most?

Chris Roberts:

My wife. No. No.

Adam Smith:

She’s laughing. She’ll get you later.

Chris Roberts:

Actually, I can’t remember the words now, but my dementia has gotten a lot worse, especially over the COVID period, like a lot of people’s actually, I think it’s lack of stimulation and being in, and not mixing, but when my emphysema kicks off or I get an infection, it does actually make my dimension much worse.

Adam Smith:

Well, thank you very much Chris for taking time to join us, and Jane-

Jayne Goodrick:

Yes?

Adam Smith:

You can get your own back on him now.

Jayne Goodrick:

As you’ve heard, my name’s Jane. I use my maiden name. I’m Jayne Goodrick. I’m married to Chris. We’ve been married 28 years. I live also live in North Wales with Chris. Yeah, I’ve been given the label of carer, but we prefer to call ourselves husband and wife because we’re a much better team as husband and wife. I am involved with a charity that’s really close to my heart, Dementia Carers Count. I’m on the advisory panel for them to give my lived experience and to help them inform their production of services. They, up-skill carers like me in the role of caring. They have a virtual carers center on their website, so it can be accessed by anybody all over the world.

Adam Smith:

That’s good, and actually the carer’s caring is one of the real focuses of this particular conference as well, so it’s great that you can share that with us, so you’ve both kind of left your old lives behind, and you kind of started this new life.

Chris Roberts:

Not through choice.

Adam Smith:

No, no, of course not at all, but your massive icons and absolutely have impacted so much in research. You were some of our very first podcast guests a very long time ago in Exeter, and I know that those particular shows have been listened to a lot and still remain some of our most popular ones because they’re-

Chris Roberts:

I must apologize now.

Adam Smith:

Well, that’s some of the very few because I mean obviously our podcasts are mostly aimed at early career researchers. It’s a real privilege to have you and your experience.

Chris Roberts:

It’s an absolute privilege for us to take part and promote the work of early-stage researchers. It’s fantastic. I don’t think that researchers and other professionals that deal with dementia get the accolade that they deserve most of the time.

Adam Smith:

Well, it’s really brilliant that you can both join us. Thank you ever so much again. I’m going to go to the researcher side of the table now and I’ll go according to my list, which means I’m going to come to Joni first.

Dr. Joni Gilissen:

Hi, so my name is Joni. I’m from Belgium. I’m a post-doc researcher based in Belgium and Brussels as well as in Kent. I’m working at the end-of-life care research group, but we’re mainly focusing on the entire disease trajectory of people living with chronic illnesses ranging from people living with dementia, but also people with cancer, different types. My personal research is more focused towards the post-diagnostic process of people living with dementia as well as older adults living with cancer and trying to navigate them better in accessing services as well as social services, as well as healthcare services. So

Adam Smith:

Thank you very much, Joni. And Charlèss?

Charlèss Dupont:

Yeah. Thank you. Indeed, Charlèss. Working together with Joni at the End-of-Life Care Research Group in Belgium, Brussels. I’m actually Dutch, background in communication and nursing, and I’m working in technology and palliative care with dementia, and especially around how we can start as early as possible, the conversations about preferences for care and treatment in the future.

Adam Smith:

So, your background was in nursing, so a real nurse?

Charlèss Dupont:

Yes. I’m a real nurse, yeah, I’m a real nurse. Yeah.

Adam Smith:

Do you think you’ll ever go back to that with the things you’ve learned from your PhD?

Charlèss Dupont:

Back in practice, I’m not sure. I do like to do some volunteering as a nurse sometimes. Also, just volunteer work in nursing homes.

Adam Smith:

Thank you, Charlèss, and of course, last, but not least Simone.

Simone Felding:

Yeah, thanks for having me, so yeah. My name is Simone Felding. I’m a social anthropologist. I come from Denmark and I’m doing my PhD in Germany at the German Center for neurodegenerative diseases, the tongue breaker, [inaudible 00:06:44], and it’s about these strange little pet robots that are being used in nursing homes for people with dementia, and specifically, I went back to Denmark to do some ethnographic field work about that, so I think that’s the brief introduction.

Adam Smith:

Thank you very much, Simone. Right. Let’s get down to business. For listeners that don’t know this conference, I’ll set the scene. The event is organized by Alzheimer Europe, which is a national membership organization to provide collective representation for 35 European Alzheimer and dementia national groups, and they do lots of special work as well. For example, I mean the European working group that Chris mentioned that he chairs at the start. They take an interest in research but also in policy, and the rights and treatment and support for people living with dementia, and also the state of things, kind of the state of diagnosis across Europe or elsewhere in the world. They kind of do surveys and reviews and publish policy documents and I think they do some… I get the impression they do some lobbying as well.

I’m not that close to them. In fact, we might have them back in the future to give us special overview of the kind of work they do. But surprisingly, the conference is in its 32nd year, which always, I didn’t quite get the 32 bits in their hashtag, which means it’s been around a long time, so the conference is in its 32nd year. It has a really wide program, and this week I’ve seen sessions on all kind of stuff from national policies support for early career researchers, the impact of the war on Ukraine on people living with dementia. We’ve heard about care home research and biomarkers, the potential for new drug treatments technology.

There really is something for everyone, and that can even include basic scientists because you don’t get a lot of basic scientists here, but I think generally, if they’d a bit of a big picture as to what’s going on outside the lab, this is a great conference to come to meet people and to get a good sense of what’s going on. That’s enough from me. For anybody who doesn’t know the format for these highlight podcasts, really what we do is we kind of go around the table and say, “What did you really like?” With a hope that those who didn’t manage to get here over the last few days can learn a little bit about what they missed. Or for those that did, it could maybe sign post due to some of the sessions you didn’t see because, of course, this was also a hybrid conference, so all the sessions from the last three days are available online.

I’m not sure if you already didn’t register whether you can register late and access the content offline, but I’ll find that out for you, and we’ll put it in the show notes with a link if there is. Okay, so I’m going to go around the table and I’m going to start over here with Simone. What have you seen this week, Simone, that really caught your eye? You’ve got a lot of notes in front of you.

Simone Felding:

I’m an excessive note taker. Always have been, and it’s my way of listening, but I have so many that I lost the overview as always, but I find this task really hard. There’s been so much to see, and I’ve met so many incredible people, and I’m completely packed with all these new impressions, and all the love as well. I feel like it’s an always very emotional for me, also, with Jayne and Chris that I really appreciated a lot and have seen a couple of times before. I think one of the sessions that I found really important was the one on intersectionality that was, well that was my supervisor, Martin Lewis. It’s not only-

Adam Smith:

Do you have to say that?

Simone Felding:

No. It’s really not only because of that, and then who then? I’m not sure how to say her name. It’s Quintelin and Caroline Smith, and I found that really inspiring to remember that when we talk about people with dementia, it’s not a homogenous group. It’s a lot of different people all over the world, and one of the examples there was even if you look at people with a Turkish migration background in Germany, it’s still a homo homogenous group. They might have different gender identities or different sexualities, or you might come from a different social class, and to really try to go into some of these and not just say… I mean there have been some first steps that are very important in getting better post-diagnostic support or getting better access, but really to also look at what about the people?

Who are the people being left behind? Who are the people who cannot talk to the people in the hospital? Who are the people who don’t know about these services or who experience racism in German hospitals?

Adam Smith:

And do you think because that is particularly difficult, isn’t it? I think, as a government or as a policy maker, when you’re trying to create services that will catch the… because you’re kind of interested in the majority, you’re not interested in the minority, but you’re interested in the majority because you’ll help more people if you spend your money on some generic service, but you know then immediately you’re going to leave behind certain people. Do you think they have to then make sure that they can try and tackle all that in one go? Or do they have to break it down? Is it okay to prioritize and say, “Well, we’ll do these first and we’ll do you guys later?” I don’t think it is because I think then they just never get round to them.

Simone Felding:

Yeah, I mean in Denmark where I come from, we have much more inequality in healthcare is really on the rise. We see increasingly of it. We see that people who have lower income, they also go to the doctor less often. They have more comorbidities, so I think it’s actually the most important is to target this group, not the majority, which is already literate about health.

Adam Smith:

Yeah, I can see what you mean. You really do have to, even though it might mean diverting some attention to another area that might not have the impact straight away, you’ve got to support all people, and I think it’s a little bit shame because it feels like we’re coming to that concept a little bit late. It’s only when the stats are being presented to show that dementia’s going to be a bigger problem in say, Sub-Saharan Africa or in parts of Central America and places like that, “Oh, we should look at those areas then.” Well yeah, we should have been doing that for quite a while. Right?

Simone Felding:

Yeah, and I think it’s one of the things that can have the biggest impact also because if you want to look at it from a perspective where you look at money, I think these are also the people who have multi morbidities, and therefore need the health system in many ways, so if you can target them earlier and help them, and also, the human rights perspective of it that the European working group of people with dementia has also been arguing. I think that’s also important to say, even though you’re not the majority, you’re still important. You still have these rights.

Adam Smith:

And embed that in your research, particularly for those ECRs listening. Embed that from the outset. Not say, “Well, okay, well first of all we’re going to get all these people because they’re”… What did they used to call it? That’s the light. There’s an acronym. There’s not an acronym, like a saying for this. Isn’t it? We’ll get the low-hanging fruit, the low-hanging fruit, and then we’ll get the kind of harder stuff. Actually, I don’t think that’s a good enough excuse anymore, whether that’s recruitment to trials or developing services or dealing with diagnosis, or even publishing things in languages. You can’t say, “Oh well, we’ll publish it in English and yeah. We’ll catch up. We’ll publish it in other languages a bit later.” No, you do it from the start. I completely agree, so carry on.

Simone Felding:

Yes, so I mean, of course, I also would like to mention the building bridges, our voices, our lives session by the European working group of people with dementia.

Chris Roberts:

Thank you.

Simone Felding:

I was so emotionally invested in that. I have no notes. This never happens to me. I cried three times. I don’t have any notes to rely on, but I’m always so impressed with how well spoken… I mean these speeches, if I could ever do such an impactful speech, I would be a very happy woman, and we talk a lot about stigma. I meet a lot of people, and they say very hard things like I would rather die than get this disease, and those are not words that I like to say, but I hear this a lot when I talk to people, and they worry. I mean, I’m an anthropologist, I work with dementia, it’s not so usual, but they work in war zones, and they worry about my mental health working with dementia, and I think one of the best ways to fight the stigma is I just want people to go and listen to you talk because you’re so well spoken, you’re so outspoken, you’re so honest, you’re so proud, and yeah.

Chris Roberts:

The thing is you’re a long time dead, aren’t you? And for someone to wish they’d rather die than have a life-changing illness, I don’t get. I think it’s something that people say when they haven’t got a life-changing in illness. When you have, you’ve got no choice but to get on with it, so there’s no choice. There’s no choice. You just have to get on with it, and if I’d thought that way, I would have been dead eight years.

Jayne Goodrick:

I’m going to disagree with you. You do have a choice and you made a choice to manage your dementia the way you have, the same as all the other people in the working group. They made a choice, but it’s not always easy. We’re in a privileged position that we were able to.

Chris Roberts:

What people don’t see… What people don’t see is it probably took us about three months to get that right. Meetings where we are giving each other feedback, where we’re going over the writings of each other, and trying to get it all correct, but not taking away the story either and not taking away their words, so a lot of work goes into it.

Adam Smith:

And I think you both make important points about how recognizing that you deal with it isn’t necessarily how everybody does because I know some of the hardest times I’ve come across have been early career researchers who suddenly they get to the stage of their PhD where they’ve got to go out of the university and do, they’ve prepared their questions so they’ve got a qualitative interview lined up, and they’ve done their recruitment, and then they suddenly find themselves sat in front of somebody who the kind of… I mean maybe I’ve met grandparents or things like that but living with a disease.

Chris Roberts:

If there’s no experience of it-

Simone Felding:

You don’t know.

Chris Roberts:

… it can be quite daunting. It can be quite frightening, and that’s why I think that this is my experience coming into it. We should be visiting universities and speaking to these guys as soon as they start training, so they don’t have this fear of engaging with people.

Adam Smith:

And I don’t think there’s any better way to get experience of that other than to meet people and talk to them because it doesn’t matter how much you read about how the symptoms differ and how no two people experience different forms of dementia in quite the same way until you actually talk to somebody.

Chris Roberts:

But there is a lot of similarities as well.

Adam Smith:

Oh yeah, absolutely.

Chris Roberts:

It’s wonderful being with like-minded people that don’t make assumptions at all. At all. Can I just say that I was very proud of the group. I mean, I just shared it. I did nothing, but they spoke from the heart. I don’t think you can beat a real story from a real person to change mind.

Simone Felding:

Yeah. Speak from the heart.

Adam Smith:

And how with those 70 years of whatever life they lived before combined onto the symptoms that everybody brings something slightly different to it, and-

Chris Roberts:

Two of the members had never spoke before in public.

Simone Felding:

No really?

Chris Roberts:

No, yeah, and that takes a lot of confidence. After a diagnosis, you lose confidence. You think you’re less of a person. It’s just human nature. The less you can do, the more useless you think you are, and the less you think you can achieve, so it’s lovely to do this, and then show people what they can still do.

Dr. Joni Gilissen:

And it’s so much appreciated because the vibe at this conference is so much different than others I went to because of the involvement of the people from the working group. Just the questions that you ask after a research presentation are different because of your lived experience and makes us think about our research in a different way, which is very valuable, I feel.

Simone Felding:

That’s good to hear.

Adam Smith:

Yeah, absolutely. When you involve people living with dementia at the start of the conference, it delivers a very different experience. This conference is very different to many others. Even things like Alzheimer’s Disease International because it’s so global that they even-

Dr. Joni Gilissen:

Right. It’s bigger.

Adam Smith:

Yeah.

Charlèss Dupont:

And I think by you being here, it’s breaking the stigma. It’s understanding, it’s so easy to involve you guys to ask you questions, to build our research based on your experiences. I think it’s really important.

Chris Roberts:

Well, one of the questions was something like, don’t quote me, for our symposium from someone watching virtually was, “What’s the criteria for asking us questions?” And I said, “Just ask.”

Charlèss Dupont:

Yeah, and I think it’s an important thing.

Chris Roberts:

Just ask. If we don’t want to answer, we won’t.

Charlèss Dupont:

Yeah.

Chris Roberts:

I can’t speak for everyone, but there’s not a lot. Now, my filters aren’t so good. There’s not a lot I wouldn’t answer and it’s your fault for asking.

Adam Smith:

But that brings us back to the slight shame of this is that should be something we would like to try and do more routinely. It shouldn’t have to wait until you’re at a conference to be able to get that input. We know organizations like Alzheimer’s Society have been really good in the U.K. at providing access to people to help in the design of research studies from the outset and to look at research priorities, but I do think we could be still even better.

Chris Roberts:

There’s an awful lot of projects going on in Europe where we are contacted immediately in the planning process and everything. I think we do much more work in the beginning in Europe than we do in the U.K.

Adam Smith:

So maybe even going one step earlier that when the funding calls are announced, in fact this came up at the ECR workshop. I don’t know. We had an ECR workshop today and talking about one of the things you could help is, so everybody talks about grant writing support, but actually rather than getting grant writing support miles ahead that you get grant specific writing support, which would be a package, so as a grant is in advance of a grant being announced here. Okay, six months ahead you could set up writing groups with people living with dementia, with researchers, and I think that could be done in basic science as well. There’s no excuse for not carrying that across.

Chris Roberts:

And take an appropriate person that understands what you’re doing to the interview process for the funding to the ethics committee with you.

Adam Smith:

Well, watch this space. We will bring we’ll that idea forward. I’m going to come back to you. Simone, was there anything else before I move along to Charlèss?

Simone Felding:

I mean, I could go on, but I think it’s fair to-

Charlèss Dupont:

We could have another discussion.

Adam Smith:

Go, Charlèss. Tell us some of your highlights.

Charlèss Dupont:

It’s also difficult because there are so many nice things, but what we already talked about, I really liked how the program is built. It’s how people with dementia, family care, laboratory full, but also policy. We are talking about how we can involve politics to make changes, and also the more inclusive the program is compared to so many years ago. So, for example, I went to the session on sex, gender and sexuality and it was really inspiring how Barry Moss of the Alzheimer’s Association talked about… I don’t know if you guys have seen because you’re nodding. Yeah. Of the LBGTQ+ community and how they’re not able to access or equal access to social healthcare, and how we should work on that, and also, the importance of language in that, and how we frame things, and how we write up, and I think that’s really inspiring.

Adam Smith:

So, was that specific research that they were presenting or was that generally talking about some of the issues?

Charlèss Dupont:

Yeah, it was indeed research about how people are excluded or not able to get the dementia care they should receive, for example. Or how he, for example, had a story about that he and his husband, he got care was not so because that’s not dementia care, but his husband was excluded from his care, for example.

Jayne Goodrick:

He was in a coma, and it was in… I won’t say the country, but they would not take the husband’s instructions. They wanted a blood relative that the gentleman in the coma had been estranged from for 30, 40 years.

Adam Smith:

Oh, wow.

Jayne Goodrick:

He was in a coma for seven weeks and his husband was not able to sanction anything, and that’s in this day and age.

Adam Smith:

Yeah, that’s terrible. Isn’t it?

Jayne Goodrick:

I think it was about 2014, was it?

Charlèss Dupont:

Yes yeah. No, no, please.

Jayne Goodrick:

No, no. Yeah.

Adam Smith:

So, have they done more survey work? Because this is a topic that’s come up a few times. I know some people on our WhatsApp group, this is their research field as well and I know that they’ve been looking at this topic as well. Was there anything else on that?

Charlèss Dupont:

Yeah, and also, but I just summarized a little bit, didn’t go in summarize all the details but also about, for example, the people with intellectual disabilities. I really liked that was on the program, and that there was no research on, for example, couples with one of them or both having intellectual disabilities, and we know for people with Down’s syndrome, for example, they have a higher risk of dementia, and there were no studies on that, and it just started now for there was Professor Karen Watchman of the University of Sterling in Scotland. Yeah, I really liked our work as well, so I liked also as a researcher in palliative care dementia to explore new fields that we don’t work in as much, so that’s great about this program that you can explore.

Adam Smith:

And were they going more in… Was this considering in terms of diagnosis or in post-diagnostic support?

Charlèss Dupont:

So, it was also diagnosis. Yeah, so also about how the existing examination instruments are not really that they have to be adopted to people with intellectual disabilities.

Adam Smith:

That comes up on languages again, doesn’t it?

Charlèss Dupont:

Yeah.

Adam Smith:

I haven’t heard it talked about for quite some time, but I’ve definitely seen talks in the past talking about the diagnostic tools we use not being sophisticated enough to even pick up where English wasn’t the first language or when people have reverted back because of the memory issues that some of the English that they might have spent a long time in the U.K.

Chris Roberts:

The problem is that most of the tools that are designed for this kind of work is aimed at the majority, and not always at the-

Adam Smith:

At the majority again.

Chris Roberts:

Yeah-

Jayne Goodrick:

[inaudible 00:26:21] but it goes back to [inaudible 00:26:22].

Chris Roberts:

… and we shouldn’t be leaving anyone behind. As you say in disabled rights.

Jayne Goodrick:

We have the same in Wales. If somebody reverts back to their first language of Welsh, if they’re what I call a proper Welsh, proper Welshy, we don’t have the tools of diagnostic tools for them.

Charlèss Dupont:

No.

Jayne Goodrick:

They don’t translate into Welsh, so heaven knows how it manages with all the other languages.

Chris Roberts:

And the LGBT community plus community, there’s enough stigma. They’ve been fighting stigma for forever, and they’re still fighting stigma and yet they’re just people like everyone else.

Jayne Goodrick:

So, if somebody’s in their seventies and they had all that fear of when it was all illegal, and the bias, and the abuse that they got, okay. They may have come out now and got over it, but as their dementia, if they get dementia and it progresses, potentially they could revert back to that fear, and trying to hide their sexuality. We’ve heard stories of people in care homes, transgender who were being forced to wear the wrong gender clothes.

Adam Smith:

I remember, yeah, some of the earliest talks I remember on when I started working dementia were on that same topic. Just Charlèss, as a nurse-

Charlèss Dupont:

Yeah?

Adam Smith:

… is this exactly the same for say in mental health care? I’m just trying to think of other things. Obviously, certainly if you have heart disease and things that maybe it matters less so many things like the diagnostic tools because they’re the same, but in say in mental health or other conditions like that are psychological in that way, are they all the same? Are we as bad at this in other things or are they better?

Charlèss Dupont:

That’s a difficult question.

Adam Smith:

And what I’m just trying to get to the point of, is this a problem that’s specific to dementia or is actually this a problem for lots of other diseases or long-term conditions in healthcare? It’s just that we’re just not very good at it.

Charlèss Dupont:

I think that for me it’s really difficult to say because I didn’t-

Dr. Joni Gilissen:

But if I may, so in palliative care research, and we know if we’re looking at end of life care and the access of healthcare use at the end of life for the last months or years of life, we do see some unequal access in people with LGBTQI+ backgrounds, so yeah. I guess it’s an issue that is applicable to other chronic illnesses as well.

Charlèss Dupont:

I think it’s also about realizing pronouns you use as a physician, for example, and that’s of course in all-

Simone Felding:

But I think what Jayne says really shows that there are some specific problems to dementia if you are living with a different gender than what you were assigned at birth, and then you get dementia, and you really have to figure out does this person now wish to live as a woman, and just forgets in the morning that that’s the clothes to put on, or the staff are not putting on the right clothes or helping with this? Or actually has this person gone back to a time where they were living as a man? So, I think there are some complicated, and I would like to recommend that Alzheimer Europe has made a report about this sex, gender, and sexuality report that’s really insightful, and they work with a working group there of people who also have dementia and have an LGBTQ plus identity.

Chris Roberts:

But people like the LGBTQ plus q plus community and people with learning difficulties, and they get enough stigma as it is, and then when they get dementia as well, and it’s like a double stigma, and then they’re refused and then because they’ve got all these problems, so normality says whatever normal is, they’re disallowed operations to make the quality of life better, especially elderly people with dementia. They’re refused operations for cataracts because the doctors think it’s a waste of time and yet it’s going to improve the quality of life.

Charlèss Dupont:

And then maybe for a question for you, for example, when I was working as a nurse working in a nursing home, we had people that had dementia where vegetarians their whole life, but they forgot, but we had the menu, and there was only meat on the menu, so they got meat because they would eat it anyways, so do you think it’s really important that we already start talking about the things that might happen when you forget what your values were?

Chris Roberts:

Absolutely.

Charlèss Dupont:

With dementia?

Chris Roberts:

Absolutely. We need to start talking about everything and everything much earlier, including dying. It’s one of the things that that’s the only… That’s the one thing in your life you can guarantee. Everything else is luck, but people don’t want to talk about it, but yeah. We need to start treating people as people. I get seen as someone living with dementia now. I’m not Chris anymore, so we need to start seeing people, especially people with dementia in care homes and the elderly in care homes as people, and we need to be finding out who they are, and we should know when they’re paying a lot of money to be looked after. We should know their likes and dislikes. We should know who they are.

Adam Smith:

I mean, if you’d have asked me a year ago, I would’ve probably. I shouldn’t say this on a podcast and admit to this, but I would’ve kind of decided to push back a little bit and start to say, “Well, I get the sense of we increasingly, we know what good care looks like. What actually we need to focus more on now is putting that knowledge that we’ve already generated through 10, 20 years of care research into practice,” because so often we just don’t, and implementation, everything I’ve been to in the last year has come back to, I’ve asked this question myself, I’ve heard others ask it of the presentations we’ve seen this week is so what now? Great. You’ve generated some lovely interesting information. What are you going to do with it? You can’t test an intervention with 32 people in the countryside in-

Simone Felding:

With the majority only?

Chris Roberts:

Yeah, yeah.

Adam Smith:

Or yeah.

Chris Roberts:

And it has to be flexible. It has to be not designed at a group of people. It has to be flexible and fit everyone.

Jayne Goodrick:

And what I think we should do is not say what does good care look like, is what does good care feel like?

Adam Smith:

Absolutely. Yeah.

Chris Roberts:

I think it was Nigel. Nigel from the working group said in one of the sessions about doing the Mammy test. If it’s good enough for your mum, your mother…

Adam Smith:

But the point I was going to make is I think I’ve changed. I’ve kind of changed my mind because I think we know what good care looks like for a lot of people, but not for everybody or what good care feels like, but not for everybody, so I’d like to see as catching up on stop trying to go for that low-hanging through instead let’s crack them with implementation and catch up and play catch up on research that we know then will support that equality of care diagnosis. These are the things that we’re still clearly not getting right, and it’s good that so many research projects have been presented here. I’m going to come back, Charlèss. We’re going to move on the pro-

Dr. Joni Gilissen:

Can I just ask one thing from research that it is? We all know what good care looks like, but still a lot of research shows that we don’t know what good care feels like for a person that we are caring for. Even the consistency between me knowing your preferences as a family member is even not that high in knowing what my loved one would want at the end or even during their current care, so I guess there’s a long way to go.

Chris Roberts:

Most couples don’t even talk about that.

Charlèss Dupont:

Yeah.

Chris Roberts:

It’s never mentioned.

Jayne Goodrick:

We’ve discussed it, and when our country went into the first lockdown, we actually were hearing all this dreadfulness coming from Italy, how they were not enough ventilators and there was so much fear, and so we had the conversation because Chris is, as you said, he’s got emphysema and Chris said, “Well if I get COVID, yeah take me to hospital, keep me comfortable, but I don’t want to ventilator. Keep it for somebody else because you were taking the decision that actually we don’t know what was going to happen to drag Chris back from the cliff of death to bring him back for what quality of life, so he took the decision, we discussed it that actually give the ventilator to somebody else. As it happened, we didn’t need them so much in our country. Thank God.

Chris Roberts:

The information at the time was that if you had a lung condition you increased your chances of dying anyway from the COVID, so I thought well why take the ventilators if they’re short off someone that might survive with more?

Adam Smith:

But that doesn’t feel right though because it’s not because-

Jayne Goodrick:

It doesn’t feel right, but that’s Chris’s decision.

Adam Smith:

No, but yeah.

Jayne Goodrick:

We were talking somewhere else that the doctors were having to make decisions as to who got what treatment. Actually, this was Chris’s decision.

Chris Roberts:

And how bad the doctors and nurses felt, so I think that you said again about having conversations earlier, but we don’t have these conversations.

Jayne Goodrick:

And this is where the palliative care can help so much because it can introduce those conversations to us when we are still fit able and cognitively able to make these types of decisions to have things written down to say, “Actually, if I’m a vegetarian, please don’t let me eat meat.” Or “It doesn’t really matter. I won’t mind.” Then you get what the person wants.

Chris Roberts:

I think palliative care. A lot of people don’t understand what palliative care is. They all think it’s about end of life because that’s when a lot of it comes into place, but I’m sure you tell me if I’m wrong, but because I’ve done a bit of work with McMillan and about dying and stuff, and palliative care was first brought in. Was it cancer? And it’s about giving someone that’s got a good chance of dying, has got a life-limited condition to live as good as they can, and it’s supposed to be brought in very early on in the illness and people have got mixed up.

Dr. Joni Gilissen:

Now I like you even more, Chris.

Chris Roberts:

Well, there’s palliative care which is there not just to help the person I’m sure, but to help the families as well to live well with a life-limited condition.

Jayne Goodrick:

Well, there are stories where the palliative care-

Chris Roberts:

And end of life is a different thing altogether.

Charlèss Dupont:

Yes. Yes.

Jayne Goodrick:

The palliative care nurse has been brought in at the last two weeks of life. It’s like too late.

Dr. Joni Gilissen:

Yeah. Actually, research shows that in dementia specifically palliative care specialist palliative care is only brought in 14 days-

Chris Roberts:

End of life, yes.

Dr. Joni Gilissen:

… before that, and that’s actually one of my-

Adam Smith:

That’s why people don’t want to talk about-

Dr. Joni Gilissen:

Yeah.

Chris Roberts:

Palliative care.

Charlèss Dupont:

But then we didn’t see a lot of palliative care on-

Dr. Joni Gilissen:

Yes.

Charlèss Dupont:

… the main [inaudible 00:37:34].

Dr. Joni Gilissen:

That’s what I said.

Adam Smith:

No. I mean, it’s quite a long time ago, but I remember there being a bit of a complaint at the time that palliative care, some consultant’s kind of said, “Post diagnosis, right. Now, we are going to start thinking about palliative care.” Which people were horrified to get that information from a consultant quite soon after diagnosis.

Jayne Goodrick:

Yeah. Well, we’re all going to die one day.

Adam Smith:

Yeah.

Jayne Goodrick:

Better to die how I want.

Adam Smith:

Well-

Jayne Goodrick:

It’s better to die with my own choices. Forgive me if I’m wrong, but it’s not about prolonging life. It’s about living the life you want, what matters to me, and if all I want is to get out into the fresh air, but it might kill me, but actually that’s what I want, then let me do that. Enable me to do that. I know it’s a bad analogy, but that’s what I see as palliative care.

Dr. Joni Gilissen:

But it’s all about-

Adam Smith:

And that comes back to Chris’s point about palliative, the misunderstanding about what palliative care is.

Dr. Joni Gilissen:

Yep.

Adam Smith:

Charlèss?

Charlèss Dupont:

But then maybe I will give the word to you.

Adam Smith:

No, no. Come on. What else did you-

Simone Felding:

No.

Charlèss Dupont:

No.

Simone Felding:

I have so much to share.

Adam Smith:

No, but did what else did you pick up? Because I think we only got one from you. Let’s get the next.

Charlèss Dupont:

No, we didn’t. Two, actually. No, but I think for now we can go to Joni, and we can discuss a little bit further because that was indeed the thing, I missed was the palliative care in the program. That was not much we maybe that’s our fault.

Dr. Joni Gilissen:

That might be a working point for us.

Charlèss Dupont:

Yes.

Dr. Joni Gilissen:

Submit more.

Charlèss Dupont:

Submit more, yes.

Dr. Joni Gilissen:

Yeah.

Charlèss Dupont:

Yes.

Adam Smith:

Okay. Joni?

Dr. Joni Gilissen:

Okay, great. Yeah, I wanted to highlight Simone’s point about intersectionality, and the special or underserved, hard to reach. I’m not sure if… I don’t like the term hard to reach because actually we are not reaching them instead of they’re not reaching us, but underserved populations are my main interest, and I went to a session about intersectionality as well, but also, there’s this interesting new interest group which is founded by Clarissa Giebel, who will be focusing or gathering people to work more only inequalities in dementia, so I guess that’s something to raise in this podcast, I think. If you would be interested, that would be really great to have a large group of people working on that.

And so, another point that I would like to raise, and which was a large part of this conference, was also the focus on COVID and the emergency response in a lot of countries and what we can learn from that. I guess maybe you have other points to add to this, but I guess it has been an important time as well, and it has some positive outcomes as well to get dementia more on the map and in national, more emphasis on national dementia strategies and plans, but still, it’s difficult. We have seen that in Ukraine and in other examples from Romania, I guess. Yeah.

Jayne Goodrick:

I like what they were saying about the diagnosis going online and doing it through iPads or phones or whatever. It doesn’t take away the personal consultations, but actually we can work smarter. We can literally do the diagnosis or whatever through the hybrid systems. Now we must not forget that, and as this has been highlighted, the necessity of touch of human contact of being in the same room, and that’s what I felt in this conference. Somebody used the word joy and I have found it joyous, and I think it’s all being together and, in the room, but if we can work smarter, then let’s take all those benefits that we were all forced to do Zoom. Nobody likes the eConsults, but actually they’re working. If we can work smarter, and then that would hopefully leave time for those that need the in-person consultations or whatever. I like that aspect.

Dr. Joni Gilissen:

Yeah, and next to technology, also, there was this example from Ukraine, so in the war they have this emergency response where they gathered a lot of stakeholders very quickly, and they started to collaborate really closely with the national government and it’s still going on, so I guess that’s also something that sort is positive thing of an emergency response that might end up in good quality collaborations.

Adam Smith:

That’s a good point because this wasn’t… Whilst there’s a lot of research presented on, it’s not entirely a research conference, is it? I mean, a lot of the talks that we get here are from different representative bodies from the charities. We had a talk from the different, what was it, a brand? It was fairly new. It was a new Alzheimer’s Association, Alzheimer’s charity.

Dr. Joni Gilissen:

In Romania or in [inaudible 00:43:03]?

Adam Smith:

In Ukraine that barely got going when the-

Charlèss Dupont:

[inaudible 00:43:07]

Adam Smith:

Yeah, they just got some materials going. They got things going, and then the war came, and they had to-

Charlèss Dupont:

Really quickly, yeah.

Adam Smith:

… pause, so a lot of those talks. There was a talk from Alzheimer’s Society in the U.K. about their work with… was its South Asian populations and that have that comparing-

Jayne Goodrick:

Punjabi?

Adam Smith:

The Punjabi people, yeah.

Jayne Goodrick:

The Punjabi group. That they’ve developed a diagnostic tool or they’re working with the Punjabi community to get the people with dementia to come forward or to families to bring them forward to break down that stigma.

Dr. Joni Gilissen:

Yeah.

Adam Smith:

And created specific materials for that particular group of people as well and videos and leaflets, and they’re saying that that was the most visited our most used part of their website. People stayed on that part of their website for longer compared to many others, so there were a lot of talks going on which were not presenting research, but they were just helping you get an understanding of what’s going on across, particularly across Europe. I mean it’s very much a European thing. There’s not a lot of international, there’s, there aren’t a lot of U.S. people here, or Australian or Asian.

Dr. Joni Gilissen:

However, the presence of the W.H.O. is also very here.

Adam Smith:

Brain health was on the agenda a couple of times as well talking about risk factors or modifiable risk factors particularly, but sorry, I’m jumping onto myself. I’m taking an up-

Dr. Joni Gilissen:

Oh, no, just go ahead.

Adam Smith:

Joni, what else did you have?

Dr. Joni Gilissen:

There was another session about young-onset dementia, which I found really surprising. There were two researchers focusing on young carers. Apparently, two to 8% of all young family members under the age of 18 are actually taking care of a person living with dementia, young-onset dementia, which was really striking to me, and in that session actually there was a family member there who was an informal caregiver for a person living with dementia, and they had two kids, one from seven years old and one from 18 years old, and she was sharing how they both coped very differently with the diagnosis of their father, so it was really interesting, just a session and a population that I’ve never came across in my own research, which we can’t definitely can’t forget.

There it was important to see the building bridges kind of in input because we have to also think about education and involving schools in our program even more to support young people raising awareness but also support them in that.

Adam Smith:

And that understanding of what’s changing.

Dr. Joni Gilissen:

Yeah.

Jayne Goodrick:

That is how we’re going to really break down the stigma because the anti-stigma award, the gentleman that won it or the team that won it was about young children going in and adopting a granny in the care home, but after the project finished, the relationships continued. Now that is getting to the next generation and those children are going to grow up without any of the stigma that we’ve all been brought up with, so we won’t have to change their stigma, we just educate them younger.

Adam Smith:

And it carried on. I mean, that’s the thing, so I picked up on Alexander Kers. He did the very first plenary at the start. He was very much grabbed all of that building bridges tagline that this conference has had and talked about how he believes that Southeast Europe will see the largest number of dementia cases in the coming 20 to 50 years because of there are more older women currently in that part of Europe than elsewhere in Europe. Plus, as well they were very… and that’s a part of Europe where there are very little psychosocial interventions right now, so we’re trying to get ahead of where the problems are going to-

Charlèss Dupont:

The travel of people immigrating.

Jayne Goodrick:

The huge migrating.

Charlèss Dupont:

Yeah.

Adam Smith:

Yeah, yeah, exactly right. The healthcare professionals from there are also not staying in the part of the country, and that’s a part of the world where for example, an occupational therapist isn’t even a recognized job. They don’t have occupational therapists, so that’s a part of Europe, but when we start to look at dementia growth across the world and these aren’t the places that also going to get the first crack at the new treatments are they. Or all the prevention initiatives that are going on in brilliant dementia prevention and brain health initiatives like they have in Scotland and other parts of Europe as well. He also made the point though that building bridges counseling conferences are great at this for sharing knowledge and that he picked on 22 project examples that were funded from across Europe.

I’ll pick a few AD Arts, Dem Care, Bridge Project for Social Inclusion, Active Mentia, which was about physical activity; Songs for Care, which was a CBT memory thing. Nomad in Macedonian, Mobile Memory Clinics, Success at ProCare, Act on Dementia. There’s lots here. If you find his talk online, I’m sure there’s a big list because all of these had websites and URLs and if I can find them I’ll include them with the show notes, but he talked about how these projects alone didn’t improve care then and made the point that we need to bridge the gap to implementation, and I’ve written down here three times in my notes, implementation, implementation, implementation because it’s a bit of a bug bear of mine in so many at the moment.

It seems to either the on implementation seems to fall to the researchers who are passionate about their subject then, but they can’t carry on doing that because they’re not going to get funded to implement, so they end up having to take another job. Or if you’re really lucky, you might get some more research funding to carry it on, but it’s to do more research when you actually want to do is go away and make that thing happen, and so it ends up being a bit of a sideline, well a passion project and not being their main thing, and I think we need to get better understanding either creating things out of the research that are better connected to policy or implementable or costed and can be mainstreamed.

Dr. Joni Gilissen:

However, I do feel that new funding schemes are putting more emphasis on implementation, valorization, dissemination of your research.

Adam Smith:

Well, some funders because I absolutely agree. I think if anybody can take a lead on this, it probably is the funders. Yeah, because if the funders thought that research was worth funding in the first place, you’d like to think that they take some ownership of the results and support the researchers. I’ll say, Thank you very much. We’ll work with you now or we’ll take this away and we’ll take a lead on trying to make this a real service or make it part of NHS guidance or Europe part of something that’s adopted in Europe, so implementation, and that came up key and I wrote that down several times.

Chris Roberts:

I loved his portrayal at the drawings with the island of projects and how there was no way that it could reach the… because it was an island, it could not reach the mainland. The mainland of care, the mainland of care, and they all fell into the sea of despair or something. Utilities, utility, the sea of Yeah. I thought that was brilliant that yeah, that’s it. Yeah.

Adam Smith:

So many are. I also saw a talk from St. Saunders from Edinburgh who works with Craig Rich, who’s been on the podcast before. They were bringing back that issue again about the use of mild cognitive impairment or mci, whether that is itself a diagnosis. I think it was interesting they’d done a lot of survey with consultants, psychiatrists across Scotland and done some qualitative interviews with them to ask did they use that term? How did they use it? How did they diagnose? And kind of no surprises, but it was interesting all itself that they came back. There was no consistent approach to this. Some did send people away with mci, some didn’t. Some had 12-month follow ups if they used that term. Others.

And there was a general view that I think they interviewed 19 old age psychiatrists. Most used mci but not all 50 50 considered it a diagnosis. Others considered it a description of symptoms and only half if they gave told people mci. Only half of the consultants they interviewed actually discussed the potential for a dementia diagnosis off the back of MCI, so you go away saying you’ve got mci, but only half said that might go on to develop dementia. Although we know not everybody gets, MCI goes on to develop dementia, so whether that’s right or wrong or not is something that is the subject of research, but only half talked about it, and they all made their diagnosis based on clinical history, psychological assessments, and only 50% of them used an MRI. That was my ones, and they didn’t talk about the test results, they talked about the diagnosis, they didn’t talk about the individual test results.

Charlèss Dupont:

But one of the sessions was also about how we should communicate those diagnosis and again, how we use language. I think that’s also really important language on if you have indeed mci, that there is a percentage that you maybe get into the dementia and be honest to people.

Chris Roberts:

But my favorite one was sat in, I sat in just to support two of the lads from the working group and it was the session about non Alzheimer’s dementia, and I found that really interesting and the two work bloods from the working group that they didn’t talk about Louis bodies, which Kevin’s got or frontal temple frontal temporal that Petrie’s got from Finland. They spoke about what it did to them.

Jayne Goodrick:

How it presented.

Chris Roberts:

How it presented, and what problems they had with it, which is totally different than just describing Louis O’s, and that was really good, and about being honest, I’m not trying to cover things up.

Jayne Goodrick:

I mean, we’ve been around dementia ville for 10 years now and I didn’t understand some of the symptoms that were described by Kevin, and I knew Lewy body had this sort of things. They saw Hall, well, not hallucinate, I wouldn’t call it hallucinations, but they saw things that weren’t there, but the way he described it, Oh, my lord.

Adam Smith:

The rings bring it to life doesn’t it sounds because

Chris Roberts:

It does turn to be all about Alzheimer’s. Yeah, because that is the-

Adam Smith:

Well, that ties into another talk I said was from Francis, Dr. Francis Duffy did a talk where they’ve taken lots of longitudinal data and mapped it to try and create algorithms that if you combine this with this, this is more likely to be, can all the data that we have from these longitudinal studies inform clinical decision making better than we do now to say also to get specifically to a particular diagnosis because at the moment they were saying that so many people who were given a diagnosis, actually the clinicians can’t say why. They’ll perform three sets of tests on two different people, and they’ll give the tests might be the same, but they’ll give one person a diagnosis and not the other because it’s a bit of a gut thing. I was going to say it’s from the conversation-

Jayne Goodrick:

That that’s a clinician’s skill. They’re just gut instinct. They can kind of one be right to me, but this one does.

Adam Smith:

Exactly. It’s not in front of two different people with the same test results, but they’ll give one person say that you were diagnosed and somebody else weren’t because it was a clinical decision, and they were the experts and trying to see if they can better use technology to replicate what the moment only somebody can do. It’d be fascinating when we constantly talk about AI and machine learning, particularly from your group of colleagues. Simone, what else Chris, was there anything else? Chris and Jane?

Chris Roberts:

I liked watching all the anti-stigma presentations and seeing what countries are doing to try and get rid of stigma. I thought that was really good and I loved the way that, like you say, it’s all information sharing, isn’t it? And that encourages other countries. Well, they’re doing it and they’re doing it and they’ve just got accolades and so we need to be doing it, and it is about keeping up with the next-door neighbors. I, so I thought some of them were really, really good, really good.

Adam Smith:

And I think some of the countries were here were definitely kind of looking to where there were lots going on. There’ve been lots of talk from, particularly from the Netherlands and from Germany. Yeah, very strong present. I thought the U.K. was slightly less present here this time. Whether that’s a reflection of our position within the European Union, I don’t know.

Chris Roberts:

Well, they won two posters and they also come-

Jayne Goodrick:

Third in the under-stigma award, so we low on numbers but up on high on.

Chris Roberts:

But Bruce’s nice to see Italy.

Jayne Goodrick:

Yeah.

Chris Roberts:

Yeah, because dementia isn’t talked about in Italy at all.

Jayne Goodrick:

No, and so it’s great to see that they’re really trying to do something to change that.

Charlèss Dupont:

And I think it’s also, it was such a positive campaign they made with the music and yeah, it was really nice to see, and I think it’s also great that all these things are displayed here because we don’t have to even the will ourselves. We can really learn from each other.

Adam Smith:

There were lots of good posters on arts, music culture. Do go look at them. I’m sorry. Obviously aren’t going to have time to talk about everything we’ve seen here today, but Jayne.

Jayne Goodrick:

I did like, was it Professor Visha, the tall blood lady who was talking about the biomarker. She was on the plenary yesterday afternoon, and she was talking about the biomarkers and where it could go, and it wasn’t a great scientific, it wasn’t a massively in-depth scientific presentation, but she was saying about how diagnosing, but what I really like, what I took away from that was from my own level. I’ll never be a clinician, but the fact that the biomarkers that were there, we can actually discount, if you don’t have the biomarker in your world, you can discount some of the dementia, for instance Alzheimer’s disease if you’ve got the blood marker, but they then explain that there’s something that’s come from was, it wasn’t multiple sclerosis, but it was something that sounded similar and I’m not a scientist, whatever it was, but they could use that.

But they’ve actually noticed that that’s in people with dementia, so they’ve not repurposed, but they’ve found something in a different discipline that they can use for dementia to actually say that there is something going on here, so to do more investigations, but what I really liked about that was the fact that you are more likely to get an accurate diagnosis. My concern was that if you’ve got some GPs still don’t like to mention the word dementia, and my worry was if the blood test says, nope, there there’s no AIDS Alzheimer’s disease there, then go away, come back later, but what I really saw the benefits of that is, okay, we can discount that one so we know to look for a different one.

She was talking about all the different types of scans that you can do. Actually, it was in the side room scans and what you can need and all the different tools they’ve got, and I like the fact that then they’re going to be more accurate because worse than getting a diagnosis of dementia is getting a misdiagnosis of dementia because you just don’t know where you are. Or as we’ve heard, if you’re diagnosed with Alzheimer’s disease, you actually have Lew body, they can give you medications that would virtually kill you, so I really like that aspect and that was the most scientific, it got beyond my level.

Adam Smith:

And important to discount things that it could be that aren’t dementia, that are still treatable, so because we’ve seen some awful stories in the news recently where people were misdiagnosed for instead of something that could have been treated. I think we probably are going to have to wrap up. I’m looking at the clock and we’ve been on an hour and seven minutes so far, so that definitely, we are definitely coming towards the end. I think we should say that the distinct group were here. There were lots of talks about their technology projects, which were all amazing. You’re going to find out more about those in a couple of weeks’ time. There was also lots of talks about Covid 19, our own blogger, Clarissa Glial, gave talks and shared a session and about the impact of which I know we’ve touched a little bit upon today. I’m scanning through the agenda as we speak to see if there’s anything obvious, we should have missed. There were lots to talk about. Residential care as well.

Chris Roberts:

The whole conference was good.

Adam Smith:

Agitation, some quick oral presentations.

Jayne Goodrick:

There was a brilliant session about going to care homes, training the staff to behave differently with the person that was showing some kind of distressed behavior, and that was brilliant, and it was all about, look the person in the eye, because if they’re looking at you in the eye that it’s basically, it was distraction, but it was teaching the care staff how to distract themselves from their usual response, and that in that turn, that distracted the person who was showing the distressed responses.

Adam Smith:

I really like that. Home care made the agenda as well. Domiciliary care never gets it. Definitely, in my view, isn’t researched enough, and that’s a massive part of looking after someone.

Chris Roberts:

Absolutely. Both professionally and for the family carers as well. I really think this is probably all we’ve got time for today. Fine as ever, you can find Twitter links and bios for all of our guests on the Dementia Researcher website, and before we wrap up any final takeaways,

Dr. Joni Gilissen:

I have one final call for early researchers. We’re organizing this World Cafe online the 5th of December to talk about how we can better support you and your career, so please join us. Adam will definitely share a link.

Adam Smith:

We will. We’ll put a link in with the show notes if you are listening to us. This in 2023 sometime, Sorry, you’ll have missed that, but you’ll be able to find the read your paper, the results. Absolutely. It’s time to end today’s podcast recording. I’d like to thank our brilliant guests such journey, Gillon Shale Depo, Simon Fielding, Chris Roberts, and Jayne Goodrich. Thank you ever so much everybody. Thank you. Thank you. Bye. For anybody who would like to know more, it isn’t too late to access the sessions where they’ve all been recorded and they’re going to be uploaded today, so head to the Alzheimer Europe website, Alzheimer hyphen europe.org, and if you’re a Twitter user, you’ll also find a massive amount of information. Tweeted pictures, posters, commentary on Twitter using the #32AEC. I’m Adam Smith and you’ve been listening to the Dementia Researcher Podcast.

Voice Over:

See you next time for Our Tech and Dementia Week Special, brought to you by dementia researcher.nihr.ac.uk in association with Alzheimer’s Research U.K. and Alzheimer’s Society supporting early career dementia researchers across the world.

END


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