Podcast, Season 2 -

Kate Swaffer – Dementia through the Disability Lens

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Kate Swaffer is one of Australia’s most prominent advocates for the rights of people living with dementia. She herself was diagnosed with early onset dementia 13 years ago and is particularly passionate about ensuring that the post diagnostic process for people living with dementia improves dramatically.
 
She was the first person living with dementia to be invited to give a keynote speech to the World Health Organisation. She was also South Australia’s Australian of the year for 2017 and co-founded the organisation Dementia Alliance International, a peer support network for people living with dementia.
 
Kate is passionate about the need to conceive of dementia as condition that causes disabilities. And how re-interpreting the symptoms of dementia as more widely understood disabilities like dyslexia, support and care for people with dementia will improve. In this episode she also explains the prevalence human rights abuses in the diagnoses and care of people living with dementia, and why segregation in residential aged care is problematic.
Transcript

Ash de Neef: Kate, thank you so much for joining us today on the podcast.

Kate Swaffer: It’s terrific. Thank you for the invitation.

Ash de Neef: Yeah, our pleasure. And I’m sure some of our listeners will be familiar with you and your work, but for those who aren’t, can you give us a bit of your background?

Kate Swaffer: Sure. So, my background pre being involved in dementia was originally as a trained nurse. And I worked in dementia and aged care and then operating theaters for a long time.
I had a change of hats and became a chef for 10 years. And I was working in health care sales as a regional manager for four States and studying a double degree for fun in my mid to late forties and was diagnosed with the young onset dementia. hence I have a very vested, probably some would say selfish interest in seeing that services and support and the diagnostic experience improves from what it was for me.

Ash de Neef: Great. And just to double in there, you were doing a double degree for fun. That’s probably the first time I’ve heard that sentence ever uttered. What were you studying?

Kate Swaffer: I was a bit of a nerd kid and I had wanted to go to university as a young person, but my very old fashioned father didn’t believe in girls studying.
I was kind of on my own, I grew up in a remote farming community. And the easiest option for a career that included a wage and accommodation was to go nursing. I had always wanted to do uni, so I decided to do that as a mature aged student. I was doing a double degree, in a bachelor of psychology and a bachelor of arts in professional and creative writing. So yeah it was for fun. Some people knit, I like to study.

Ash de Neef: Well each their own. I’m not sure that would be me, but.
So you said that you wanted to make sure that people who are being newly diagnosed with dementia don’t have the same experience that you had. And what is that experience that you want to try and avoid?

Kate Swaffer: Well, The experience that happens and unfortunately 13 years after my diagnosis, it’s still happening to people newly diagnosed with dementia. And I know that through the membership of Dementia Alliance International.
For me, I had an unusual diagnostic experience in that I was under the care of a neurologist and neurosurgeon for a brain malformation. So I didn’t have to fight with a GP to take me seriously. I thought that I had cognitive changes that were side effects of some brain surgery. So my diagnosis took a couple of years, which is quite a short period of time for most people with young onset dementia.
But then you get diagnosed and back in 2008, 2009, I wasn’t referred to anyone. It was just, I’ll see you in six months. The neurologist who diagnosed me, he didn’t provide services or support. And then I started eventually to engage with service providers, healthcare professionals, and others in the space, and everyone advised me to give up work.
In fact, when I mentioned to my employer, that I was diagnosed with young onset dementia I pretty much lost my job. Nobody told me that was a breach of my rights as a person with an acquired disability. Nobody talked about dementia as a condition causing disabilities. So I lost my job.
It was recommended that I get my end of life affairs in order. I was advised to give up university because it would be too stressful for somebody with dementia. I was told, believe it or not to start going to aged care daycare a day a month to get used to that. Now bear in mind I was 49 years old. So that’s not very palatable, but it’s also very poor advice.
However, if you look around the world and joined in with listening to other people with dementia, talk about their experience of diagnosis and post diagnostic support. Everyone says the same thing is still happening to them. It took me a year or so to come to grips with the whole thing.

Kate Swaffer: Even nursing in dementia I didn’t understand people could be younger with dementia. I only really thought of it as an older person’s disease. There’s 30,000 people under the age of 65, diagnosed under the age of 65 in Australia with YOD [Young Onset Dementia].
I suppose I had a couple of kind of lucky breaks. My neighbor was a retired speech pathologist and I do have a form of aphasia and my language was quite impaired early on. And she said to me, “so who’s your speechie?” And I said, “I haven’t been referred to one.” So she supported me to find one of her colleagues who was still in the industry. So I’ve had speech therapy from very early on in my diagnosis.
And because I’d been advised to give up uni and being an older student, I was friends with a lot of the lecturers. So I was having a coffee one day at uni, and said to one of the psych lecturers, “I’ve been told to give up study, do you think I should?” And she said, “what would you do that for you? You love her. You’re doing it for fun. We have a whole disability support team here. I’ll refer you, and you’ll need a letter from your doctor confirming your diagnosis.” Because a lot of my disabilities were then, and still are quite invisible.
And the University of South Australia supported me to complete two undergrad degrees. And then the university of Wollongong supported me to complete a master’s of science in dementia. And then I started to think, “what the hell?” If a university can support me to keep living, why can’t the health care sector? So you get angry about that stuff.
And you know, getting dementia as a disability, even into research projects has been a major drama, because we don’t see dementia as a disease, we don’t do it like that in our country. And yet even the conversation amongst people with dementia in the earlier days when I started raving on about dementia is a condition causing disability, because the WHO make that very clear on their website. They used to say, it’s the leading cause of
disability and dependence in older persons worldwide.
So if the World Health Organization States clearly that dementia is a condition causing disability, it is about time the healthcare sector actually accepted that and started to manage, help people manage the symptoms of dementia as disability. So they can continue living as independently as possible for as long as possible.

Ash de Neef: Yeah and really must’ve been such an isolating time to go through this diagnosis and have no support and basically be given advice that didn’t match up to your experience at the time of receiving the advice. To say, get your affairs in order, get out of uni, slow down and didn’t sound like you’re ready for that at all.

Kate Swaffer: And if i put on my nurses, hat.
And I know that if I’d had a stroke or some other brain style injury or illness, I wouldn’t have been just sent home to die. I would have been offered rehabilitation and whatever other support I needed to get back to work if possible. So it’s a major violation of people’s rights.
And even older people who may have given up paid work, are living fun, productive, meaningful lives. You know playing bowls, going to stitch and bitch classes or volunteering, lots of older people volunteer.
To be told, to give everything up and then not supported to keep doing the things they love, that’s a breach of rights in my opinion. And it sets people up to fail and to be just told to go home and get ready to die is not good enough.

Ash de Neef: Yeah, absolutely. And stemming back to what you’re saying there about the World Health Organisation recognising dementia as a cause of disabilities, why do you think it’s the case in Australia, that it’s still not seen as a disability or as a cause of disabilities?

Kate Swaffer: I wish I knew the answer to that because then that might help me rectify it.
I think that too many of the experts, whether they be academic or healthcare professionals. Have too much of the say, and if there’s not enough evidence-based research around. But there’s been plenty of evidence on rehab for dementia and in fact for, well over a decade, and yet we are not offered rehabilitation for dementia.
You know, I am pleased to say that the WHO is working right now on a document for rehabilitation for people with dementia. But that’s been a long time coming and I don’t really know why. There have been such poor attitudes to providing something as simple as rehabilitation for someone with a speech disability.
For example, you know, let’s break down some of the symptoms. If you’ve got primary, progressive aphasia, you have a speech disability. I had an acquired dyslexia. I wouldn’t have told my kids not to go to school with dyslexia. The school would have been legally obliged to provide them with disability support the university is legally obliged to provide them with support for say dyslexia or wheelchair ramps or whatever the disability is.
I have the same rights and I just think people have been slow to get with the 21st century view of dementia.

Ash de Neef: So when you’re describing that you’ve acquired aphasia and you’ve acquired dyslexia, is this, you’ve needed to have separate diagnoses to receive this sort of information, or this is a self-diagnosis or –

Kate Swaffer: No, no. That’s part of the diagnosis with my neurologist. So instead of just being told, I had this type of dementia because I needed a letter from him for the university.
So I don’t think it’s generally done like this, but I have asked my neurologist here in Adelaide, when he put together the letter for the university to outline the symptoms and what they equated to. So, I haven’t acquired dyslexia. I have PPA.
And so then well they’ve worked with people with aphasia. That’s easy. I work with students with dyslexia. That’s easy. So it’s, how we translate the symptoms into disabilities that can be supported.

Ash de Neef: Yeah okay. It’s clicking a lot better for me now that I can understand there was a translation process that needs to happen.

Kate Swaffer: And that’s not really happening and it’s not going to happen while ever, the experts around the world think it’s a waste of time to do it that way or even to use the word disability.
I’ve been quite frustrated in some research projects I’ve been involved in the last two or three years. I can’t even get the word disability in there. Like our survey, do you know, “dementia is a condition causing disability?” I couldn’t even get that question into the survey.
So I, I find that extraordinarily frustrating. And these are people I respect greatly, but they’re the experts. So you just can’t get past them sometimes. You have to find other ways to chip away so you can see it in different ways.

Ash de Neef: Yeah. Do you think that some aspect of that difficulty is in the cumulative nature of the disabilities, and that the traditional path of dementia is that more disabilities are acquired?

Kate Swaffer: No, I think that it’s just been that historically, when I think back to my nurse’s training I think I learnt there was pre-senile dementia and senile dementia. We only ever saw older people with dementia. I didn’t know, young people got it. I didn’t really have any advice or education about dementia.
And I guess predominantly we saw people in the latest stages. My GP said to me once, if you’d been diagnosed with this 50 years ago, your family would have just been told, “oh mom’s got a bit strange lately”, and you still would have lived at home.
And, if you were behaving a bit differently at the Christmas party or the birthday lunch they’d go, “Oh, mom’s just a bit weird these days, don’t worry about it”. Whereas now it’s like this big stigmatizing thing.
So we just need to move away from the medical only kind of view of dementia so that we can provide people with dementia with a much better pathway to keep living for as long as possible and as independently as possible.
But you know, there’s other things that we could be doing. The WHO’s global disability action plan which I guess will be reviewed because it was from 2014 to 2021. It’s better health for all people with disability. Our governments could be accessing that now. Our service providers and healthcare providers could have been accessing that since 2014. But they don’t seem to want to know about it yet because they don’t see disability as the major and kind of banner.
And I can remember when I first started talking about rehabilitation for people with dementia, which is quite a few years ago now. And I was on a national group here in Australia that was working on the first national clinical dementia guidelines.
And I was at a meeting in Sydney and I was campaigning pretty hard for rehabilitation for people with dementia. And, I think it’s a sort of stigma and attitude towards people with dementia that’s still quite common, but maybe more subtle these days.
But, I was told by a professional what would I know anyway, you’re just a person with dementia, and those people now are actually teaching rehab for dementia at the universities.
I just had to be tough. You just have to tough it out sometimes as an activist. Because I had a lot of data to say why we should have included a lot more about rehab for people with dementia in those guidelines, and they were completely ignored. But at least people are starting to change slowly.
Globally, if you look at things like the sustainable development goals, we are failing people with dementia seriously, because we don’t even provide adequate access to healthcare for people with dementia. Because we don’t provide rehabilitation just to start with.
So we’re failing people with dementia. We could be providing community-based rehabilitation all over the world, but it doesn’t matter how many times I’ve talked about that nobody seems interested in it.
You know, that’s a community-based rehabilitation I think would be a far better thing for us all to be doing globally than a dementia friendly community project. Which generally is not very friendly to people with dementia anyway, because it doesn’t even include them in the work as paid staff.
But CBR is focused on assets, not deficits and on quality of life, it’s a community based rehabilitation.
It’s acquired brain injury style rehabilitation post-diagnosis. Which is exercise, lifestyle changes, speech pathology, neuroplasticity, occupational therapy, neurophysio therapy. All in line with all the other chronic diseases CBR is about disability assessment and a support straightaway as soon as you’ve got a diagnosis.
And it’s about things like loss and grief counseling, not just information about dying and aged care.

Ash de Neef: Yeah.

Kate Swaffer: So, you know, we are failing people seriously by not offering things like that. And when I was first diagnosed people with dementia, generally weren’t even being given palliative care when they were actually dying.
At least now that’s changing a lot that palliative care globally have done a massive amount of work in that space. So we’ve got some little incremental bits of change around the world, but I wouldn’t say one country anywhere is doing it significantly better than any other.

Ash de Neef: Well, some of the work that you’re doing you were a co-founder of Dementia Alliance International, and before we jumped on the call today, you were saying how you’ve got many calls today around the world. Talking to different conferences in the such.
Through your work with Dementia Alliance International, are you hoping to reach some of those sort of decision makers or those powerful people? Or is it more of a groundswell type thing?

Kate Swaffer: I guess in a way I get invited to a lot of these things. So the, group that I’m, working with tonight in Estonia are trying to improve pre and post diagnostic care and support for people with dementia. And they see me as a global expert in that area. So I’ve been invited in that capacity rather than my capacity with DAI, Dementia Alliance international.
As an individual, I tried really hard to I suppose advocate or campaign for change locally. I couldn’t achieve that. I did a lot of work nationally in Australia many years ago now with the peak body here, but I couldn’t really see any tangible change for people with dementia.
And there’s not really any support for us, a help sheet and maybe a few support groups or a short course on living with dementia. Dementia is a long-term condition for most people that’s not enough.
And so DAI evolved because we wanted support, so we decided if nobody else was going to do it, we’ll do it ourselves. So we provide peer-to-peer support.
But then I had an invitation in 2015 to be a keynote speaker at the WHO’s first ministerial conference on dementia. And in that I made three calls to action.
One was for rehab for people with dementia. One was for the same rights as any other person with a disability, access to the CRPD and other conventions and all of the discrimination acts in every country.
And also back then, most of the research spend was on research for cure. Well, you know, we’re still light years away from that probably. At that conference, they’d announced in 2015, that global figures were an estimated 47.5 million people living with dementia. And then they spent the first day of it talking about a cure.
And I’m going, “well what about all of the people living with it like me?” So, I advocated at that meeting that we should have a more balanced approach to research for improving care, and for improving – of course, research for a cure is important.
And now that research has changed in the last few years where there’s a lot of risk reduction research going. There’s a lot of care research being done. A lot of research around improving diagnosis and support for care partners and families. So we are getting a more balanced approach in research, which is very good to see.
But I realized that I couldn’t get any traction nationally or locally, so maybe I should work from the top. And so I’ve done a lot of attending meetings in Geneva and also New York pre-COVID, the convention of state parties on the CRPD. And so if you start to get the top coming down and then, you know, the grassroots people coming up saying, “hey, we want better post diagnostic support.” Sooner or later, the people in the middle surely will have to get the message.

Ash de Neef: Can you just clarify what is the CRPD?

Kate Swaffer: The convention of the rights of persons with disabilities. Every member state in the world, I think ratified that – or maybe 190 something countries have ratified that convention. I think it came out in 2008.
But people with dementia have almost systematically been ignored in that convention until the last two or three years. And DAI and the work that I do there is we are trying to change that.

Ash de Neef: And are there any countries in the world that are successfully incorporating the disability lens to looking at dementia?

Kate Swaffer: Not really. Not that I know of. So I was reading an updated “how to live well with dementia document” from the UK just last week. And it definitely talks about disability, in the context of you can get a disability payment or pension, or I’m not sure what they call it in the UK.
A bit like I can have an NDI S package here. But nothing about supporting people’s disabilities, still all about get your end of life affairs in order. So I haven’t really seen much improvement.
In Scotland, they are on their third national dementia plan. Countries have been slow to progress with national dementia plans and the ADI, Alzheimer’s Disease International, has been working really hard to change that.
And we support them in any way that we can of course, through Dementia Alliance International, because they’re one of our strategic partners. But I haven’t seen an action plan yet that includes dementia as a disability, with the support that you would have in your action plan for say stroke or for someone after a brain injury or someone with mobility disabilities.
So we legislate for wheelchairs and hearing loops and wheelchair ramps, I mean and hearing loops and, access for people with sight impairment. And even though Australia launched a communication access training and communication access symbol in 2016, nobody’s taken that up, anywhere in the world.
Why wouldn’t you? It just, it does my head in really.

Ash de Neef: Yeah, that must be incredibly frustrating. And I think just echoing what you’re saying there about it’s all very fatalistic, isn’t it? There’s no real focus on the capabilities of someone who’s been diagnosed, but rather just on the deficits that they might acquire and

Kate Swaffer: People have said to me and I’ve long before the risk reduction evidence came out or before I read professor Dale Bredesen’s book on reversing dementia. And his is a holistic approach, no pharmacology. And he’s still seen as a bit of a quack, but I think he’ll one day win a Nobel prize for his work. But his work has given me some evidence for the approach that I’ve taken.
But people have said to me, “why have you bothered to improve your health, change your diet, change your lifestyle? You’re going to die anyway from dementia.” But we’re going to die. We’re all going to die.
If I had heart disease or diabetes, my doctors would all say even – if there was no medication for those conditions, and luckily there is. They would all say get your health in order. So it’s only logical that you should, we should be doing that for all people with dementia.

Ash de Neef: Yeah, absolutely. You’ve done some research into the segregation of people who are living with dementia in care facilities and the separation of them from people who don’t have dementia. Linking this to human rights, how does that connect to a human rights violation?

Kate Swaffer: I’m regularly asked why are human rights an issue? Really are people with dementia’s rights being violated? Or the fact that I wasn’t offered rehabilitation, that I wasn’t offered speech therapy that I wasn’t offered anything other than go home and get ready to die. That’s a violation of adequate and appropriate post diagnostic care for a condition causing disability, that’s also a terminal illness. I wasn’t given counseling I wasn’t offered anything.
But then if I needed residential care currently I’ll be placed in a secure dementia unit, which yes, it’s better than being shackled to the bed or a chair, which was what happened in the seventies when I started nursing. But, we’ve just had a Royal commission for the last, two and a half years. We had 20 or 21 reports into abuse and neglect in residential aged care before that.
The government already knew what to do. Let’s not blame the current government let’s blame all governments. They already knew what to do. We know from the experience of orphans, our people with disabilities, who used to be institutionalized and segregated. That they experienced abuse and neglect. And yet we’ve been just systematically dumping people with dementia, into secure dementia units, segregating them.
NASA stopped segregating Negro Americans in the fifties. And yet we, as a society seem quite happy to segregate the people we’re meant to love the most and value the most, the older people in our families were quite happy to dump them in segregated units for their safety.
I think I’m the only person probably in Australia, I haven’t read all 10,000 on whatever submissions – I stupidly ordered a hard copy of them all. So i received this huge box a few weeks ago, I’m slowly pouring through them.
But I think I’m the only person who put in a submission to the Royal commission the aged care royal commission where I think that one day governments are going to be asked to say, sorry. Just like we – they have had to, to our Aboriginal Australians.
Even the special, the outgoing special repertoire Catalina, I can’t think of her last name, even in her final document before she stepped down in that role, she had not done much work around dementia. And we’d met at the UN and, and so I had some input into her final document in that role. And the special rapporteur on the rights of persons with disabilities, also says we should stop institutionalizing and segregating people with dementia or any other disability.
So, you know, it’s a hard ask. I understand that many people will need some form of residential care or support. But I honestly believe that institutionalization and segregation is a serious breach of the human rights of anyone who’s, I call it, detained like that.
It’s physical restraint, it’s not best practice. And there are emerging residential care providers who are doing it differently, like Group Homes Australia. We need to take a look at what the best practice is and start to change. People building major institutions should think again I think, because down the track I think that institutional care just like we don’t put orphans, children who don’t have families, we don’t put them into institutions anymore.

Ash de Neef: One probably common response you might receive to that is for people who are working within larger institutions, that it’s not operationally feasible or it’s not quote, unquote, safe to have people living with dementia, being able to access doors to leave facilities and that sort of thing.
And um, I can see that it’s probably a frustrating response by your reaction there, but you just help me dismiss that response a little bit? Why is that not valid in a sense?

Kate Swaffer: Well I think that we’ve proven categorically with the Royal commission that staff are undereducated. They are understaffed. There’s not enough staff ratio to resident ratios. And yes, I suppose if I worked in a large institutional setting, I would want the doors locked because you can’t have residents wandering out on the roads and I understand that completely.
But if providers like that and staff who work in those institutions dared to have a look at somewhere like Group Homes Australia where they are doing it differently. You know they have between 5 and 10 residents, living with and without dementia in what looks like your home, my home, anybody else’s home down any street in suburbs in Sydney.
The residents can’t get out the front door and just like when I’m home in my own home, I keep the front door locked so that people can’t get in rather than, so I can’t get out.
But I can have access to my backyard and Group Homes Australia is doing that really well. They’ve got highest staff ratios. They took a lot of risk setting up a model of residential care like that. But I remember listening to Ita Buttrose give a keynote presentation at the Dementia Australia, what would have been their national conference, except it was a virtual conference last year.
And in the chat afterwards, somebody from a institutional setting said, “but we’re doing it really well.” And she made some pretty tough comments about, the poor care in residential facilities. And she kind of snapped back at this person and said, “well if your institutional setting is doing it well, then yours is one of 11% of the residential settings in Australia that’s doing it well. Stop getting upset if the rest of them get picked on for doing it poorly and help them do it better.”
Maybe we will end up with some form of larger institutional settings, but we have to stop segregating, and we have to find a better way to make it in line with an individual’s rights. The CRPD is intended as a human rights instrument with explicit social development dimensions. It adopts a broad categorisation of persons with disabilities. And it affirms that all persons with any disability must enjoy all human rights and fundamental freedoms.
That might be the fundamental freedom to take the risk of falling over.

Ash de Neef: Wow. Kate we’re running out of time, but I really want to ask you about redress before we go for today. Cause I know that that’s something that in your submission to the Royal Commissions you talked about redress and that’s something that people who’ve suffered abuse through aged care and not able to access.
What sort of options, do you think should be available to the families of people or people themselves who’ve been abused within aged care.

Kate Swaffer: And I think when I say use the word redress, it’s really only lawyers that know what that word means. And Dr. Linda Steele, who’s with the university of technology in Sydney, she and I have a project that commences on 1st of July, officially. Which is about redressing neglect and abuse of people with dementia in aged care.
So, what we’ll do as part of that project is to actually explore what redress is. And then explore through our research is whether people think it’s something that should be available to them. So, neglect and abuse of people with dementia is a systemic problem in residential aged care, we don’t need any more reports to confirm that.
We know that people are being harmed that. Families are being denied, especially at the minute being denied access to those people they love in residential care at the minute.
But there hasn’t been an ability to access justice, or any healing or closure through our courts. The idea of redress is where does a family member go when they know that someone they love and are maybe a guardian for, legal guardian for in an aged care facility has been abused or neglected. Where do they go for that?
After the Royal commission, I was in a focus group on whether there should be reporting of abuse and neglect in residential aged care? And, you know, I was scratching my head.
“How can that even be a problem?” If there was abuse and neglect, whether is just general abuse, physical abuse, verbal abuse, sexual abuse, if that was happening to children in a childcare center of course we’d report it to the police and everywhere else. And every other body. And yet there seems to be such ageism and people don’t see the point of reporting to the police.
If somebody was sexually abusing a child, we would want them to go to jail. So why aren’t the people who are abusing people living in residential aged care, or even people receiving community care who are abused, why aren’t they going to jail? So that’s what the project is really trying to explore.
We might find that the general population who we will do the research with might say, “look It’s all too hard, we don’t think this is an issue.” But I think we might find that people once they understand what redress is, and that there’s redress in our indigenous population. There’s redress in a whole other range of areas where there’s been an abuse and neglect, why shouldn’t there be redress for people with dementia living in residential aged care?
So it seems pretty wrong that there isn’t currently, and that there was no recommendation in the 148 recommendations in the final report. There wasn’t any recommendation for redress in those findings.

Ash de Neef: Yeah, that sounds like an important and rather large undertaking there to, to assess what can be done and what’s the appetite for it. But there is no doubt that as you’ve said that we don’t need more reports to tell us this and things going very wrong within residential aged care.

Kate Swaffer: No we don’t. We actually need action. We actually need to work together and stop either protecting our patch – which is what a lot of providers are doing. Or blaming each other – that’s what governments are doing, and actually work together to fix this.
Because we are all getting old, whether you’re 20 or whether you’re 70, you may need these services one day. And if we do need to keep institutional setting care, we need to make it so that it’s compliant with all of the human rights of individuals in our society and find a way that, abuse and neglect doesn’t happen.

Ash de Neef: Yeah. Fantastic Kate, thank you so much for your time today. I feel like I’ve learned a lot in the conversation. Is there any way you’d like to direct our listeners to go? Maybe that’s DAI website or research with Dr. Linda Steele?

Kate Swaffer: Look, I think there’s a lot out there. I’ve got a website, that’s got lots of links to lots of places – Kateswaffer.com. The Dementia Alliance International website, which is www.infodai.org. Associate professor Lee-Fay Low and I wrote a book on being diagnosed with Alzheimer’s or another dementia, kind of like a one-stop shop that was published in, 2016.
And it was the book I wanted when I was first diagnosed. And it’s kind of like from diagnosis to what dementia is and all the different types. And then all the stages right through to death, is what’s in that book. Obviously I help write it, but I do think it’s an excellent resource.

Ash de Neef: What was the name of the book?

Kate Swaffer: Diagnosed with Alzheimer’s or Another Dementia: A Practical Guide for What’s Next for People Living with Dementia, their Families and their Care Partners. And that’s currently out of print, but you can buy it on Apple books still. It was the one stop shop I wanted when I was diagnosed, which was why I agreed to co-author.

Ash de Neef: Fantastic. People can check that out on Apple books. Kate, thank you so much for your time today. Really appreciate it.

Kate Swaffer: Yeah, really a real pleasure.

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