Paola Barbarino – The Global Alzheimer’s Movement

Transcript

Ash de Neef: Paola thank you so much for joining us on the program today.

Paola Barbarino: Thank you very much Ash. It’s my pleasure to be with you today.

Ash de Neef: It’s great to have you. It looks like a really sunny day over there in London. Can you give our listeners a little bit of your background and the work that you’re doing at the moment?

Paola Barbarino: Yes. So I’m Paola Barbarino and I am the chief executive officer of Alzheimer’s Disease International [ADI]. Alzheimer’s Disease International is the umbrella organization of over 105 Alzheimer’s associations within nations. So we have one member per country, 105 countries and 20 countries in development.
We were created by the fourth largest Alzheimer’s Associations back in the eighties, the UK, Australia, Canada, and the US. Because it was important at the time to realize that unless you represent multiple regions of the world and countries, you really cannot be had at the level of the World Health Organization or the United Nations.
And at the time there wasn’t a healthcare international body, an NGO that would look after Alzheimer’s or dementia, so ADI was created. Now if you think about other conditions, other diseases, for example, the International Union for Cancer Control that was clear to me in the thirties, and yet ADI was created in the eighties. And this tells you a little bit about the huge stigma surrounding Alzheimer’s and dementia.
So nobody really wanted to talk about it even a, to laugh at our level many years ago. And we know now that it’s the seventh leading cause of death in the world, but at the time nobody really knew anything about prevalence and incidence.
So this is also what ADI does. We started looking at the figures globally for dementia, because that we gave us a better arsenal of weapons if you wish, of statistical weapons with which to attract the attention of the world. So I manage the organization, which is a membership organization, We do publication as I just told you. And then the third thing that we do, we do awareness raising on a larger scale. So it could be going to multi-laterals like the UN or the WHO, it could be going to regional bodies, it could be go to national goal is with our members. Or it could be generally doing awareness raising. Now we are recording this during World Alzheimer’s Month, which is our biggest awareness raising campaign.

Ash de Neef: Fantastic. And for a lot of our listeners who work within aged care and health care in general, they might feel like a raising awareness is something that they don’t need. That if they’re dealing with people who have Alzheimer’s every day, but is this still a really prevalent issue in countries like the UK and Australia?

Paola Barbarino: So awareness raising is massively important. There is a feeling in the sector, I don’t come originally from the sector. I have been very fortunate to have seven different careers and work in many many fields. And when I joined the sector, it struck me how committed and knowledgeable the people in the sector were, but also how ignorant the world was about that effort.
So the, there is a kind of denial globally around dementia still. In many countries, the stigma is very high. People still find it difficult to talk about a loved one having dementia. And although we in the sector like to think that this is not the case anymore, It is still the case.
So it’s very easy to believe that because you’re always talking to the same people and because those people know what it is that you do, there is no need to educate others, but alas, that’s not the case. So in certain countries of the world the situation is particularly bad. I’m thinking, for example, the continent of Africa, where even at governmental level, people are in denial about the existence of dementia in their country.
But also in a more enlightened the country, if you wish like Australia or the UK where the Alzheimer’s society and Dementia Australia are doing great work. Even then you do have pockets that still feel very stigmatized by dementia. And then that stigma becomes higher at the time in which you, as a person find it difficult to obtain a diagnosis or to obtain post-diagnostic support or information about the disease. Or provision of respect care, assistance, psychological support.
So these things are still not available. And therefore that creates further sources of unhappiness and stigmatization. We publish a report report every year, a world Alzheimer’s report as you know. And two years ago, we published one on stigma and we interviewed 70,000 people all over the world about the topic. Because I really wanted to have a baseline, a big baseline – what is it that people feel about stigma and dementia? And I have to say it was very prevalent even in high income countries. So we still have a big battle to fight.

Ash de Neef: That’s really interesting to hear. And we’ve spoken to a few people, a few people in the UK actually about raising awareness, some high profile people like Angela Rippon and Ian Sheriff who are doing good work raising awareness over there, but they’re focusing too much more on the public. But it sounds like there is a real place for raising awareness for people who are living with the disease or who have been recently diagnosed.

Paola Barbarino: You have to raise awareness with everybody. So you cannot limit it to one segment of the population or those that should be helped the most. And the one that have been diagnosed, or living with it.
Raising awareness with the public is essential because dementia, as you know, he indiscriminately, you don’t know who is going to be getting it. And so you do need to make sure that everybody knows. So we do a lot of campaigning, for example, around the warning signs of dementia, or what do you have to do in order to reduce your risk? Now it always helps us when high-profile figures like the wonderful Angela Rippon for example do social media, or tweets, or go on public programs to say something about the issue.
We at ADI have got our own high profile figures, which have operate at a global level. We have the queen of Spain, the queen of Sweden, et cetera. Who are great advocates. It’s very difficult also for an organization to find advocates because the stigma is high. And as you know, several public figures do have dementia, but the families don’t want to talk about it.
So, you know, It’s still a challenge when the Dementia Australia finds an advocate for you guys, for example, that is a big achievement. It’s never easy to find people on to advocate for something as complex. Plus for many people the experience of looking after a dear one that has dementia is a very personal and sometimes very painful experience. And you know, some people just don’t want to share it.

Ash de Neef: Yeah, absolutely. Now you’ve mentioned a few times about the annual report that ADI releases, and I believe you just released this week in alignment with World Alzheimer’s Day, which was yesterday as we recorded. Can you tell us a bit about what was in this year’s report?

Paola Barbarino: Yes. But also we should take a step back. So ADI is the organization that organizes World Alzheimer’s day and World Alzheimer’s Month. So we created it about 10 years ago, because there was nothing that was an a day to celebrate Alzheimer’s and dementia. And it’s wonderful to see just how many people now do it.
We started measuring its impact on social media about three years ago and the first year we measured 900,000 impressions say, and the second year we measured 2 million and we thought, “wow, it’s growing”. Then last year we measured 20 million, we thought, “oh my God, this is going really seriously”. And then this year as I speak to you yesterday, we were at 31 million. So the movement is becoming bigger and bigger. So for us at multilateral level is very important to have this figures because we can go with much more confidence to the WHO, to the various bodies that we interact with and say, look, “there’s millions of people here that are really asking, demanding for change”.
So change what we demand in the report. The one we launched yesterday is about diagnosis. So we have commissioned two reports, one on diagnosis this year, one on post-diagnostic support for next year. Both of them to be done by McGill University. Now, the reason why we work on diagnosis this year is that we could see this little perfect storm and gathering on the horizon.
And that is, that COVID-19 first and foremost has obviously, the diagnosis of dementia. So we could see that at some point that would be a glut. And a lot of people would ask for a diagnosis because they’d be too scared to go and see the doctor for year and a half.
The second one is that, there have therapeutic breakthroughs on the horizon. So may know, of course that they have been there is the possibility of some medical cure. And we can’t really talk about cure, these are old things at the moment delaying the onset of the disease, but certainly something that the public would be interested into and want.
Now, all these compounds are coming on the market require a confirmed diagnosis of Alzheimer’s or dementia, and actually to diagnosis around dementia is really difficult. It’s not easy at all. And also when I say Alzheimer’s and dementia is kind of wrong, because one is a disease, one is a condition. And so Alzheimer’s is a form of dementia, there are 104 forms of dementia and Alzheimer’s is one of them, the most common. But diagnosing all of these is not simple at all. We still don’t have a blood biomarker. We think there’s going to be one arriving soon. And that also is one of the reasons why we need the diagnostic report, because we thought, it was going to be further diagnostic capacity.
But these presence of this possible therapeutic breakthrough that would require diagnosis means again, that people would be asking for a diagnosis because if you have to be diagnosed timely, which is in both cases necessary, then you do need to go to your doctor and there would be again a glut of people that would be hopefully more interested. This is why the theme of this year is also know dementia, know Alzheimer’s and learn to recognize the warning signs of dementia. So you can ask for a diagnosis.
Now, the other thing that we realized was that in certain countries, in many countries, the availability of diagnostic equipment is very limited. But in other countries, even the availability of psychiatrists, nutritionists, neurologists that could interpret those results is even lower. And even in countries like Australia, for example, you will have areas that are better served and areas that are worse served. And so some people, for example, in rural areas, pretty much all over the world comment and lament the fact that there are less provisions in there areas.
So, you don’t want to end up in a situation like we have say in England of a postcode lottery where some people get better, because they happened to be in an area that is better service and some others don’t. So it’s quite a complex thing, but we also, we wanted to look at the problem from a geopolitical viewpoint obviously, from a social viewpoint. And from the point of view of people living with dementia, so what had been that experience?
Because we’ve been hearing a lot of stories about people pretty much being told you have a diagnosis and that’s it go back home. They say this is terminal and no information provided. So one of the interesting things we discovered in the report is that a high percentage of people this terrible experience of being given a diagnosis and the doctors don’t point them to the relevant information. And yet, 98% of all Alzheimer’s association that we work with have that information on the website.
So there is a simple, break point in communication between the doctors that should just point the person, at least at the very least to the resources that are available. So that people could start understanding what would be the progression of the disease, whether they can access information,, and what can they do to make their quality of life better during the course of the disease and for the families.
And this is also something that is part of a human rights, if you wish, because uh, one of the things that we found in the report is that that 30% of clinicians felt that because there was nothing to do, why bother doing a diagnosis? So, you know, That is a big statement, very big statement, because who is anyone to tell me whether I should know or not, it’s my right to know. And if you don’t respect that you’re being condescending towards another human being. I mean, who’s to say whether I should know, certainly some people may not want to know fair enough, it’s their prerogative. But there is a right to know. So the report has covered a lot of these these points.
The report is also very technical so it’s also very good for family doctors, it’s very good for researchers because effectively it goes through in, in great detail, all the technical elements of diagnosis. Diagnosing from the point of view of a doctor that has to deliver a diagnosis and do a diagnosis. And what is all the latest around diagnostics and from the point of view of a researcher, what is the latest bit about research.
But again, as I say, we look at it from all kinds of angles, political angle from angle, a person with dementia or a carer and so on and so forth.

Ash de Neef: Wow. So many different moving parts there have to tie up into one report and one approach. I hadn’t thought about the, but you’re right of course, the people who are being diagnosed, if the service they’re getting from their GP is not adequate or is not preparing them for the next stage by providing resources, then they’re being left out and there is a need to direct them to things.
Have you found that it’s successful in targeting GPs to encourage them to give more information or do you just need to go above the GPs and go straight to the audience?

Paola Barbarino: Well to a point, i’ll tell you how the first idea of the report came into my mind was actually slightly different. I had gone to a gathering in Europe of a European body that was working on big data and diagnostics like wearables and all the kind of stuff that you can get from wearables.
And so as I was going to speak at this event and I was gathering information on this particular issue. I was given this article, about the fact that many people who suspected they had dementia, but they were too scared to go to the doctor to ask for a diagnosis because they didn’t want, you know, a lot of people don’t want to know really. They want to know, but they don’t want to know.
They go to websites which were bogus websites, if you wish, that were promising bogus cures. And then they were spending money on this cures. So I said, “oh my God, you’re talking of people who are really vulnerable”, because they’re scared, because they don’t know what they have, because it may be very complex and may make them vulnerable.
So why don’t governments provide you with the point of entry in the healthcare system website, like it would be the NHS in England. And say if you think you have dementia, this is what you have to do. And either give them a test or tell them what are the next steps. But they don’t. And so if path, the report is practical, it’s all practical.
So you were saying, you know, how do you get to the GP? The report was about also making recommendations to government. We make some very clear recommendation all over 50s should go for a checkup at the doctors. So the report now becomes part of the public health strategy. So what we are trying now to do for all of our members is to go to their government with the report and say to their government, “look, this is a big problem, it’s not sorted. This report gives you all the background about it. What about public health campaigning for the public, yes, but also better education for the doctors?”.
Because obviously the doctors have to be knowledgeable about a huge amount of topics. And their education is actually the duty of the body that employs them. There was a study by OECD in 2017, OECD is the body that gathers all the higher income nations, that said that in the lifetime of a doctor, an average doctor in OECD country would get 12 hours of tuition around dementia and Alzheimer’s. You know, 12 hours, and how many years did they study? Seven?
So, you know, This was high income countries. So just this tells you in our report on stigma of 2019, the survey we did a global practitioner, 62% of nurses and doctors thought that Alzheimer’s was a part of normal aging. So, you know, to your audience listening to that today, just stop and think that there is lot of fellow practitioners that just don’t understand this is an organ that is shrinking effectively. So they think this is just normal.
And so look at the scale of the problem. Obviously I want to mobilize the world. We need public health campaigning, better education for doctors, we need to do that. And this is all [culminates] to having a better life for the people are living with dementia and for the family. In the report, there are a lot of testimonies with people that say, “oh my God, if somebody had just told them, what we will be going through, it would have been so much easier to organize our life”.
To understand the person that we were looking after, to be nicer in any possible circumstances about this. And this is about dignity, it’s about making another human being still feel loved and understood at the time in which there can be enormous confusion.Well, from the point of view of the person that has the disease, and from the point of view, the family, the sees this person with the disease.

Ash de Neef: People who’ve listened to the show and heard our episode with Kate Swaffer or remember the term CRPD, the UN Convention of the Rights of Persons with disabilities. And people living with dementia are covered under this convention but it seems like globally, there are some failings in the way that the human rights of people living with dementia are safeguarded.
Can you give us an overview of, what this looks like – Human rights?

Paola Barbarino: Well, I mean, I, first of all, I will acknowledge the enormous immense amount of work that Kate has done on this topic. I mean her and Peter Mittler before her and with her have been tireless in trying to bring to the attention of the UN this issue, about this invisible disability. And this is a big topic and we also covered it in last year report, which was on design, dignity, and dementia, that was actually authored by a Wollongong University team at that point.
The CRPD, its a complex instrument. So it covers a bit of everything, but it also leaves ample interpretation of it, according to the local customs and rules. Now, I think rather than the getting into the instrument, it can be quite dry, I’ll give you a couple of examples. So for example, in Costa Rica, I have seen it really employed at its best. So Costa Rica for a period had a very benighted government and they really look at it from the point of view of the rights or what they call the adultos mayores, the senior citizens. And they would have committees at local government to senior citizens deciding what would be the best care, for example, in a care home. What did they want to happen when they needed that kind of assistance?
And it was all done from the point of view of older citizens have human rights. So, you have to respect them and you have to give them the instrument to decide by themselves what they want to do with their life at the point in which they are in a vulnerable state. This also extended to cover people that didn’t have any more the faculties to speak for themselves.
And it extended to creating day centers for example, or even overnight centers for people that were homeless, elderly homeless, with conditions like dementia or other addictions. I really thought that it was such a great application to the letter. So if you think everybody has a human right, then you have to look up this particular issue in the context of people taking those decisions themselves.
On the other end of the spectrum, you’ve got Africa where a lot of our members report of immense amount of stigmatization and also physical attacks. People being chased in the street because the other people think they are having demonic possession and this horrible way of believing.
But again, it’s all us to do with communication, public awareness. So our members in Africa, there is plenty now, are doing the most enormous amount of work about educating people about the fact that this is a disease. Like unfortunately cancer is a disease, like heart disease is a disease. It’s a disease and so we have to get with it.
But what worries me most, as I was saying earlier, is the denial of some African states that is dementia in their country – their focus is entirely on the young population. So in certain countries, as we found out in our report in 2017 on Africa, If you’re lucky enough that you have a family that looks after you, nobody would worry and somebody will look after you. But if you’re not, you end up in the street and you die effectively, that’s what happens. So we need to protect the rights of those that at this moment in time are going through that. And this can only happen through raising awareness, and awareness can only be raised by people that are in the field locally and by the people that live locally and can interact with their government.
So our job at ADI is to provide our members in Africa, for example, with the instrument and the authoritativeness to challenge that government. And we are a non-state actor of the World Health Organization, so we can write to a government and we can point out if there are shortcomings and ask for the Global Action Plan for Dementia, which is the instrument legal instrument that we are working under at the moment, which we advocated for four years and was approved in 2017. And we can ask for it to be applied.
And we can point out where do we feel there are shortcomings. But it’s a lot to work. You know, we are a think tank. We are a small team of people which make us very flexible, very capable to do things very quickly. But nevertheless, you know, it’s a huge amount of work. So there’s a lot of people working behind this.

Ash de Neef: Yeah, that’s really fascinating. And so, you said that you’re working with about 20 countries at the moment to develop the associations. What, does that look like helping them start something up?

Paola Barbarino: Well first of all, I want developing members all over the world. So not just in Africa. There’s a lot of, countries in Asia, for example one in south America, but a lot in the Caribbean Association. Working with the country, it’s actually enormous fun because normally what happens,I shouldn’t use the word fun, but actually working in my field is wonderful because the people behind it are so motivated, it really energizes you.
So usually what happens is that you have a group of well meaning citizens, usually carers that have had an experience of dementia in the family, or doctors, or carers and doctors, they get together and say, “look, this is a disgrace we don’t have anything. So at the very least let’s start and create support groups, so the people that are going through the experience can speak to other people that are going to experience”.
But, you know, I live in England and a friend of mine asked me the other day saying, “look my dad clearly is beyond himself because his wife has dementia and has just gone into a care home.” He’s a man that doesn’t really have a social circle because he’s always been with her. And at the moment he finds it so difficult because he doesn’t know anyone that is going through this. So this is in England, where there is a lot of provision.
So you can imagine everybody in the world that has that problem, so it’s lovely when these groups of people come together and want to help other people, because they’ve gone through this experience. This is normally how it starts. Then they come to us and they usually find us. Sometimes we don’t know how they find us, sometimes we find. And then ask us to help set up a charity, sometimes they’ve already set up a charity.
We have two levels of education, which we call Alzheimer’s University. So the first one is about how to create a strong association. So we bring them normally to London or wherever in the world we are holding this Alzheimer’s University. And we get them to work together, with a number of professionals from larger association that explain for example, how governance work? How do you keep the board? How you make yourself accountable? How do you do fundraising? How do you raise awareness? How do you interact with the people around you. So that’s the first level.
And then they go and for three or four years, they set up the association and we monitor them. So we provide help, advice, support. We put them in touch with other members, if they have particular issues. Other members that we know have gone through that before, so they can have a mentor. And then about five years later, we bring them together for another Alzheimer’s University and this is around advocacy.
So we then spend with them a lot of time going through government interaction. How do you interact with your government? And for us, that is illuminating. Because of course, you know, there is a strong feeling in the Anglo-Saxon world, I’m Italian but I live in London, that all governments are homogeneous.
You write to your MP and you protest and whatever. But of course that doesn’t work. In the vast majority of the world you also have to be quite spirited, you have to look at the opportunities in front of you. You know, if there is a high-profile politician and you happen to know that there is dementia in the family, that person probably is the most likely person for you to contact and say, “look, would you help us?”
So in many, many countries, that’s how big advances have happened because you spent time getting to know who is government and whether they could help you. But what you can be pretty sure of is that not much is going to happen if nobody does anything. So we try and make sure that there is a constant reminder that our community exists and has rights .

Ash de Neef: Yeah. Fantastic, that’s really interesting. I mean you can imagine it starting from such a small thing. I wouldn’t have thought, but you’re right that you need to teach people how to set up an organization and then how to influence government and influence people around them to start changing their opinions.
We’re getting towards the end of time today, but I wondered if you might have a message you’d like to share with our listeners, perhaps one for people who are working with aged care or supporting someone living with a diagnosis?

Paola Barbarino: I think for the people that are around you to think about how fortunate you are in Australia to have Dementia Australia for example. You know a great organisation that has been going for a long time, and appreciate a little bit more how difficult it is still to keep this organization working and influential.
And, if you can support your local member, so ADI has members in every country, I don’t know where your listeners will be, but there is a list of members in our website. If you can support people locally, it’s really important because you know, they need your support, your love, your understanding that that is a big game here, and it’s very difficult.
We are always against the tide of many other priorities. And if we want this to be a priority, the individual voice matters. I also would like to remind people that, in Australia there’s been recently, for example, an important commission on ageing. And I know, the Australian government is trying very hard to be more, if you wish,“dementia-friendly”. But that is constantly threatened by resources, and by the other things competing for resources. So it’s up to your audience really to do direct action, to make sure that you continue for us all to be together.
So when there is World Alzheimer’s Month do participate in it. I think you guys are having dementia awareness week, but this is all part of the same movement, every Member of ADI interprets it as they want. Do use those hashtags, do try to do that.
And again, you are very fortunate in Australia to have important advocate like Kate Swaffer. That is not to be ever forgotten. It’s difficult to have a generation of people that advocate, it’s important for us to have more.

Ash de Neef: Fantastic. Paola thank you so much for your time today, really quickly. If people want to find out about the ADI’s report, where can they get that?

Paola Barbarino: So we have a website which is www.alzint.org and under that website, there is a section called reports and research, and you can download it from there. Everything we do is free coming to our webinar is free. So I hope your audience will find it of interest, and we’ll leave to keep in touch.

Ash de Neef: Perfect. Thanks so much for your time Paola.

Paola Barbarino: Thank you very much.