Episode 17: A Conversation with Kate Swaffer - Chair, CEO and Co-Founder of Dementia Alliance International.
Summary written by Dagny Reese.
In this weeks episode, hear Dr. Bahijja kick off the Monday Science Podcast Dementia Awareness series, aiming to raise awareness for Dementia Awareness Month. Listen to an insightful interview featuring Kate Swaffer, a humanitarian and Chai, CEO and Co-Founder of Dementia Alliance International.
Monday Science is running a fundraiser for DAI during September 2020 in support of Dementia Awareness Month, aiming to raise £500. Please donate via our Just Giving Page.
If you are interested in learning more about Dementia Awareness Month, please check out the DAI website, the Dementia Awareness Month website, or the rest of the Monday Science Podcast Dementia series that will be released weekly throughout September 2020. The series hopes to not only bring attention to the troubles faced by those with dementia, care workers, and other healthcare workers, but also to bring attention to lesser-known issues with dementia care, especially in countries outside the UK.
Please read on to check out the interview with Kate, or listen to the podcast for the full interview.
Dr. Bahijja: To start off, if you could let out listeners know a little bit about yourself.
Kate: Currently, I live in Adelaide, but I used to visit England [quite a bit], however, not at the moment. I previously worked as a nurse with age and dementia care, and in operating theatres for a long time. After that I worked as a chef for about 10 years, and then as a regional manager and educator for a healthcare company. In the last 15 years, I’ve completed a number of tertiary degrees — [I also complete] part-time research, work as an investigator on a number of projects and write books, as well as public speaking and blogging. I also work more than full time at Dementia Alliance International in an unpaid role […]
Dr. Bahijja: I loved the varied aspects of your career. Often, we hear from people with less diverse career backgrounds, and it’s nice to be encouraged or inspired to do a variety of things. […]
Dr. Bahijja: Could you give us an overview of some of the terms used in Dementia care?
Kate: Clinically, dementia is a gradual decline of functional abilities, such as thinking, concentration, judgement, personal ability, or memory — in at least two of these functions as mentioned earlier. It is a decline in the usual skills, not taking into account things a person has always had trouble with.
Technically it is a terminal illness, but it is most commonly seen in older persons. It is not a normal part of the ageing process. Not only is dementia not curable, but it is generally not treatable. There are no available pharmaceutical treatments for any type of dementia, or disease-modifying drugs, like for disease. Medications can alleviate some symptoms, however. […]
There are a variety of other diseases that cause changes in cognition other than dementia, but many of those are treatable — such as delirium, which is common with elderly patients, or even Lyme disease.
Dr. Bahijja: It’s very interesting that you bring up that dementia is not part of the normal ageing process. There is a massive stigma that memory loss is part of the normal process.
Kate: While the risk of dementia increases with ageing (Senescent memory loss), it’s not necessarily a normal part of ageing. There is some normal change in memory with age, like with skin or vision.
Dr. Bahijja: To move on, a lot of the time, we hear the terms Alzheimer’s and Dementia used interchangeably. Could you elaborate on the distinction?
Kate: Dementia in itself is not a [specific] disease; there are over 100 types or causes of dementia — Alzheimer’s is one category, and there are even many different types of Alzheimer’s. You could liken dementia to being a car or fruit — there are apples and oranges, but even within apples or oranges, there are different varieties […].
The vast majority of dementias are caused by Alzheimer’s, but vascular dementia is also very common. Many people think they are two completely different diseases. I believe it is very important for the general public to understand that Alzheimer’s is just one of many types of dementias.
When I was diagnosed with early-onset Dementia in Australia, I was finding that people weren’t getting support from Alzheimer’s Australia, as they had different types of dementia, previous to its name change. […]
Dr. Bahijja: While the name changes for organisations are expensive, it would definitely help the general public in understanding what dementia means.
Dr. Bahijja: I’m finding with my journey in the podcast, such as with our episode with health inadequacies and the LGBT+ community, the lack of data is also due to information not being directly recorded on the health form, [things not being specific enough]. It goes back to terminology, definitions, and communication.
Kate: Globally there are millions of people living with dementia, and now in the last two decades, dementia has the same stigma that AIDS and cancer patients had in the 70s and 80s. Like[being hid in hospitals], and not having visitors, for example.
There is a discussion of changing the name to remove the stigma, but the problem at the core is really the treatment of people with it. Dementia has been heavily medicalised — sometimes it can be better viewed as in a change in the way someone experiences the world, or as an acquired disability.
Generally, with ages 65+ up, it would be called older onset dementia, but when symptoms occur before age 65, it used to be referred to as early-onset dementia, or now, younger onset dementia. Everyone with dementia goes through the early stages, so this can be an easier way to refer to it. Only around 7–10% of people with dementia are under 65, so [many people are not aware] that younger people can get it. There is very little support [and a lot of stigma] for younger patients. It’s really complicated, I think. […]
A lot of the silence or lack of communication surrounding dementia can really shut down any dialogue or discussion surrounding dementia.
When you get cancer, everyone rallies around you. When you get dementia, everyone disappears.
A lot of older patients are discouraged, and it stops them from wanting to get a diagnosis. With younger patients, it doesn’t really stop us from getting a diagnosis, because I can tell you now, I didn’t think I would get a dementia diagnosis. When I was getting tested, I didn’t even know I was being tested for dementia, [I assumed] it was just a follow-up brain scan. It’s now the most feared disease, even more than cancer, in the UK and Australia.
Dr. Bahijja: Going back to symptoms, could you just comment on the common symptoms of dementia, especially those that younger-onset patients might not recognise?
Kate: Well, my first symptom, that I initially didn’t equate to being dementia, was an acquired dyslexia, like getting words wrong, seeing words upside down, etc. I first assumed this was a side effect of my brain surgery, and did not equate it to dementia. Other things like changes in my sight, peripheral vision, I first thought were issues with my issues, but are actually caused by dementia. Many people report other changes to senses like taste and smell.
Dr. Bahijja: And, is there a difference between how younger onset dementia is diagnosed in comparison to older onset?
Kate: From what I’ve seen, it’s less common with young people, and with old people, its almost expected that people would get dementia. Oftentimes older patients experience almost no testing or diagnostic care, whereas younger patients tend to get more brain scans, PET scans, neurological testing, etc. over a number of years. […]
I also wanted to comment on the stigma of older age and how older people are presented in the media. This can trickle down and result in a quick diagnosis based on assumptions without proper due diligence, and it’s very sad to hear you mentioned the same thing here with dementia.
Dr. Bahijja: To move onto talking about your experience living with dementia — I wanted to talk about your studies and why you decided to withdraw from your PhD?
So, I was studying a Bachelors of Psychology and a Bachelors of Arts when I was diagnosed with dementia. The university really helped me see dementia as a disability, as I was sent to the disability support team, and I was set up with a bunch of [resources]. This made me a lot more confident about finishing my degrees, and then I went on to complete a masters [degree] of science and dementia care. I then applied for a PhD about dementia, disability, and economic stigma. My symptoms, however, advanced too much, and I was having difficulty doing citations, researching, etc. […]
[With the 21st-century view of dementia care], there is something I have termed prescribed disengagement, where they basically tell you to give up living your life.
Dr. Bahijja: I think that the term prescribed disengagement [was a bit shocking for me when you mentioned it].
Kate: Generally, it’s just this idea of having to give up your pre-diagnosis life. For older people, that could mean volunteering or any range of fun life activities. You have to give up life as you know it, plan for your end of life affairs, and start getting used to age care. Really from what have seen, the treatment plan hasn’t really changed in the past 12 years.
People need support living with dementia, not just dying with it. […]
Dr. Bahijja: I think, as we’ve been having this discussion, I also feel that one of the challenges being an academic, if you have a passion or interest in something — if that something is not of interest in terms of national/government funding, you aren’t going to get any funding. Money is what shapes movement in research, and there are also communication challenges. In this scenario with young onset dementia, if there was a clinician interested in this, but there’s a gap in funding or communications, [then nothing happens]. Oftentimes with these things, people with the conditions end up becoming the researchers themselves.
With my grandmother, who has dementia, she makes comments about how things have changed, and my mother does too. Now, with the pandemic, funding is going to shift even more towards pandemics or viruses […]. This is why we need research and communication with people living with the conditions we are looking into.
Kate: Years ago in Australia, we tried to get various not for profits for neurological conditions to work with us, but they didn’t want to work with Alzheimer’s Australia. Now, these groups are complaining they can’t get funding, that “dementia is getting all the funding” — now COVID is also taking over the funding.
Enjoying the interview so far? Listen to the full episode on Spotify, Google Podcasts, Apple Podcasts, or on the Monday Science Podcast website.
Dr. Bahijja: Moving on from that, I want to talk about your books. So, you’ve written two books — “What The Hell Happened to My Brain?: Living Beyond Dementia” and “Diagnosed with Alzheimer’s or Another Dementia”. I just wanted to learn about your journey, about writing a book about your experiences and what it was like for you?
Kate: So, the book writing process was probably a bit different [for me]. I loved writing throughout my life and used to read around 6 books a week, I even had a diary as a child that I would use as a sort of therapy. When my first life partner took his life I was 27, and really, if I hadn’t taken to journaling, I’m not sure how I would’ve survived that experience.
When I was first diagnosed with dementia, I cried almost for weeks, and then I found some excerpts on google from a doctor diagnosed with dementia, [and they really resonated with me]. He got his clients to journal, and now also journals. I started journalling myself and called the journal “What the Hell Happened To My Brain”. […]
I also started a public blog and a website, and was eventually approached by a publishing company. I had always wanted to write a book since I was a kid, so I thought, okay, I’ll write a book about my experiences with dementia. […]
People without dementia often refer to people with dementia as sufferers — but we aren’t sufferers, we are just people living with dementia.
[I had a lot of challenges], and I got a lot of ugly comments — I used to put them all up on my blog. I learnt this from my sort of guru for self help, Wayne Dyer, whose also a motivational speaker and author. I first met him at a conference in Adelaide — he stood up and spoke about writing. He used to get these handwritten letters (this was pre-email), and some would be lovely and some would be awful. He used to write up the letters and would reply to every single person.
So the blogging for me, went from that and then to the book, once the publisher contacted me. I wanted a book that told me about dementia, in a language I could understand. I collaborated with a doctor, and she did the more academic writing, and it took us about 18 months to get a story. We wanted stories from the LGBTQIA+ community, general practitioners, psychiatrists, etc. We tried to capture lots and lots of stories. Eventually, we will get around to writing an international version.
Dr. Bahijja: I was actually going to ask if you were going to write another book — having just that book, for an international audience, would be greatly appreciated.
Kate: I think it would be a very useful book now [for international audiences]— where it says to go to Dementia Care Australia, people can go instead to [the equivalent service] in their own country.
Dr. Bahijja: [I’m also quite interested] in writing my own blog now — maybe not publicly yet, though.
Kate: One tip I was really thankful for with my blogging, is just don’t edit. Just write. Don’t worry about writing, spelling and grammar.
Just get it out, and you can fix all the spelling and grammar at the end. The editing stunts the creative process.
Dr. Bahijja: So, moving onto a little about Dementia Alliance International. It’s an amazing organisation and we are fundraising for it throughout September — could you just tell the [audience] a little more about it?
Kate: So, it’s a very interesting organisation. It was co-founded by 8 people with dementia, some with early-onset, some not. We now have members in over 49 countries.
It started, partly, because of the co-founder, Richard Taylor, had always wanted an international support and advocacy group made up of people with dementia, [for people with dementia]. I had been connected with him via email, and I had the great pleasure of meeting him in London in 2020 at the Alzheimer’s International Conference.
We decided that we would actively work towards setting up an international organisation. What we did on the first of January, 2014, we had the website go live — which was partly an accident at first. We started with weekly support groups on Zoom, even back in 2013. We had a volunteer that continued for a year or so, that would co-host the groups. Now we have many support groups in different time zones, and now with COVID, we have set up even more. There are weekly cafes and educational seminars and webinars, as well.
Our social media space is pretty great, we have even gotten awards for our Youtube channel and social media presence in 2018 and 2019.
We brought our advocacy to an international stage in 2015, when I was invited to do a keynote presentation at the WHO. That was a huge game changer for us — those 8 minutes gave us a huge global voice. On the UN’s website, we also had a huge part in changing the representation of dementia being not only seen, but also managed as a disability.
In the future, there may not be a cure, and we may not have a way to slow progression — but if we can improve quality of life and how long we gave live independently, that would be amazing.
I’m quite lucky as I’ve got a handful of close mates and others, but generally beyond my husband and children I have very little family actively taking part in my support. The isolation and the loneliness, and discrimination are still very much a daily experience.
With COVID, we are now seeing the rest of the world understanding the stigma, the fear, and the isolation. Let’s hope that after this pandemic is over, our lived experiences stay with us so we can work towards improving the experiences of those with dementia.
Dr. Bahijja: Has COVID-19 been a considerable challenge for those with dementia, on top of what you’ve already mentioned?
Kate: Some of the other challenges, I think, many have reported that due to being isolated their symptoms have gotten a lot worse. Members of DAI in nursing homes, or other isolated places, have reported a rapid increase in symptoms during isolation. That feeling of isolation has worsened a lot too.
Dr. Bahijja: Just going back to DAI — the organisation is run by people actively living with dementia. Have there been any challenges running DAI, not necessarily due to individuals, but also due to perception from those outside the organisation?
Kate: That is a very interesting question — I think that there is a perception that is definitely reflected in how easy we find it to get funding. People think people with dementia couldn’t possibly run an organisation with good governance. We now have volunteers without dementia, such as in finance or accounting, to improve that image of good governance.
There are also challenges within the organisation as well. New members regularly tell us, it’s the first organisation where they really could be themselves, or that it’s the first time they’ve smiled or laughed since their diagnosis.
We do a daily series of video podcasts and blogs now, from people with dementia. One of the first ones was an interview with our board member Wally and his wife Pat — he said that joining was almost life-saving for him, in a way. We’ve grown fairly quickly, so we’ve really had to ramp up our services. Our promise has been that services will always be free, and our membership will be free.
Our commitment is also not having people without dementia as members. Oftentimes, lead caretakers do a lot more of the talking, planning, etc. than the person with dementia. At conferences, sometimes the people with dementia will often not have opportunities to speak, or that their partners will talk overtop of them. It’s another part of that prescribed disengagement — the partners are told to take over, it’s not with [malicious intent]. People really take on that learned helplessness when you never let them do anything for themselves.
Dr. Bahijja: Will those video podcasts and blogs also be on the youtube channel? Could you tell us a bit more about the channel, as well?
Kate: The website is just a sort of normal, not-for-profit website, with a blog and such, human rights page, services page, etc. During Dementia Awareness Month, we also have a daily blog, which is either written by a new member, or a video podcast — those are also published on our Youtube Channel. The channel also has many of our past webinars.
My husband volunteers with uploading many of the videos — I’ve started calling him my backup brain jokingly. [Really, though, it’s a good way for] people to approach dementia care.
Dr. Bahijja: Just as we are heading towards the end of the interview, what does dementia mean to you, personally?
Kate: Dementia has given me a lot of clarity about the relationships and people in my life, which is a bit ironic, given the increasing fog in my brain. On some days I would say though, it is the third greatest gift in my life. Sometimes the things I have gained far outweigh the negatives.
If I could give someone with dementia just one piece of advice, I would say to just reclaim your pre-diagnosis life. If you used to go bowling, or to the knitting club, and if you can’t go on your own anymore, just get someone to take you. Don’t end up in some activities room in an aged care centre. If you didn’t want to give up when you were diagnosed, you’ll want to give up then.
To those without dementia, it’s more than just awareness, it’s about being generous, kind and showing compassion, as you would with [other illnesses], like cancer.
Dr. Bahijja: At the beginning of this interview, you gave us the clinical definition of dementia. I wanted just to bring it back to that; how would you define dementia based on your experience?
Kate: It’s a terminal, progressive and chronic condition, but I also see it as a condition that causes acquired progressive disabilities. If we can see dementia through a lens of disability, with the appropriate disability assessment and support, we can live and maintain independence for longer. It’s not a cure, but, doing that allows for us to have a more positive experience.
Really as a final message, don’t be patronising to those with dementia, but it’s essential to be kind. Be kind with yourself and others.
Thank you so much to this weeks guest, Kate Swaffer, for her time and unique perspective and insights into what it is like to live with dementia and how dementia care and attitudes can be changed to improve the lives of those living with dementia.
Follow Kate on Twitter & Instagram (@KateSwaffer), or on Facebook (@Kate.Swaffer) & LinkedIn.
You can also learn more by checking out her books, “What The Hell Happened to My Brain?: Living Beyond Dementia” and “Diagnosed with Alzheimer’s or Another Dementia”, or her blog .
Want to hear the full episode? Please check out the Monday Science podcast on Spotify, Apple Podcasts, Google Podcasts, and Stitcher.
If you have any questions you’d like to be answered by Dr Bahijja, feel free to send them in via the website chat, or email MondayScience2020@gmail.com. You can also send us your questions as a voice message via https://anchor.fm/mondayscience/message. We love to hear your thoughts!
Were you confused about any of the terms used in this summary?
Dementia — A disease/disability associated with ongoing decline in brain function. Types include vascular, Alzheimer’s, mixed, Lewy body dementia, etc.
Alzheimer’s — Dementia caused by physical abnormal growths called plaques in the brain. There is currently no cure.
Vascular Dementia— Dementia caused by lack of oxygen to brain that results in cellular death to brain cells.
Disability— A condition that can make it harder for a person to do certain activities (walk, eat, talk, etc.), interact with people or the world around them, etc. or one that causes an impairment in a physical function or structure in the body.
Terminal Illness — A disease that cannot be cured or treated in an appropriate manner, generally results in the death of the patient.
Chronic Illness — A long lasting or long term persistent illness, disease or condition. Examples include chronic pain, chronic depression, and type 2 diabetes.
Progressive Illness — An illness, condition or disease that progressively gets worse or develops more symptoms/effects overtime. It is different from a relapsing disease in that it is a general constant decline overtime.
Image Credits:
Dementia Alliance International Banner by Dementia Alliance International.
Image of brain models (2nd and 4th image) by Robina Weermeijer.
Image of brain scan (in B&W) by Alina Grubnyak.
