.jpg)
Redefining Dementia
resources and helpful life experiences, the podcast will look to connect with the audience to provide helpful and meaningful takeaways.
Redefining Dementia
Michael Booth: Choosing Empathy Over Apathy in Young Onset Dementia
When Michael Booth was diagnosed with young onset Alzheimer’s at 46, his world changed almost instantly—he lost his job, his driver’s license, and a sense of stability. But instead of letting the diagnosis define him, Michael chose to reshape it into purpose.
Drawing from his unique experience as both a former caregiver and someone now living with Alzheimer’s, Michael speaks candidly about identity, grief, and the power of acceptance. This episode is both grounding and uplifting, offering practical wisdom for anyone navigating dementia—personally or professionally.
We talk about:
- Giving yourself time to process before making life decisions
- Living in the present rather than fearing the future
- The specific challenges of young onset Alzheimer’s
- Finding joy and purpose through new interests and advocacy
- His book Dementia: You Are Not Alone and why he wrote it
Michael’s message is clear: behind every diagnosis is a whole person—and we owe it to each other to meet dementia with empathy, not apathy.
Resources & Links:
🔹 Michael Booth – Connect & Learn More
- LinkedIn: Michael Booth on LinkedIn
- Young Dementia Network Profile: Michael Booth – Steering Group Member
📖 Book
- Dementia: You Are Not Alone by Michael Booth
A practical and personal guide offering support, understanding, and insights from someone living with young onset Alzheimer’s.
🛒 Available here:
📰 Featured Articles
- BBC News – “Man diagnosed with dementia aged 46 after watching TV show”
- Yahoo UK – “Memory loss made me feel lonely and isolated”
- Journal of Dementia Care – Book Feature
About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Season 2 of Redefining Dementia. I'm Jana Jones and I am thrilled to be joined by my co-hosts, daphne Noonan and Ashley King for another season of fresh conversations, new insights and valuable tips on navigating dementia care.
Speaker 2:Hi, I'm Daphne. This season, we're diving even deeper into topics that matter, from caregiver resilience to meaningful engagement. Plus, we'll have a fantastic lineup of experts to share their wisdom.
Speaker 3:And I'm Ashley At Person Centred Universe. We help you provide person-centered dementia care at home, work or in your community. Through this podcast, our goal is really to strive toward a better world for those affected by dementia by sharing resources and insights from experts around the world.
Speaker 1:We are also introducing a new format this season with rotating co-hosts. You'll hear from each of us as we take turns leading discussions with incredible guests, some familiar faces and some exciting new voices.
Speaker 2:So, before we begin, just a special note the information that we share in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we'd encourage you to seek medical advice from a qualified healthcare professional.
Speaker 3:So don't forget to hit that subscribe button and join us every other Thursday as we explore the many dimensions of dementia care. One conversation at a time.
Speaker 1:Welcome back to Redefining Dementia, the podcast where we explore real stories, hard truths and hopeful shifts in how we understand and experience dementia together. Today we are honored to welcome Mr Michael Booth, an advocate, educator and author who is transforming the global conversation around dementia. Author who is transforming the global conversation around dementia. Michael brings a powerful personal perspective as he was once a carer for his mother who lived with young-onset Alzheimer's and now, having been diagnosed with young-onset Alzheimer's disease himself at the age of 46, he speaks with empathy, honesty and courage.
Speaker 1:Michael has become a leading voice in dementia advocacy across the UK and beyond. He is a member of the Young Dementia Network Steering Group, sits on advisory boards for the Alzheimer's Society, alzheimer's Research UK and the Geller Commission, and is currently developing a dementia care training manual grounded in accessibility, empathy and lived experience training manual grounded in accessibility, empathy and lived experience. Michael's voice is clear, compassionate and deeply needed in the dementia space. His story is a call to meet dementia with empathy, not apathy, and to see the person, not just the condition. Thank you so much for joining us and we hope you enjoy our meaningful and moving conversation with Mr Michael Booth. Meaningful and moving conversation with Mr Michael Booth. Welcome, michael Booth. Thank you for joining us on the Redefining Dementia podcast today.
Speaker 4:Thank you for having me.
Speaker 1:Can you share with us where you're joining us from in the world?
Speaker 4:I'm in Hartlepool, which is the northeast of the UK, England.
Speaker 1:Okay, well, it's lovely to have a guest from the other side of the pond. So you are joining us today as someone who is living with dementia and I think you are able to share a really important perspective. And we often say, and our guests often say, when you've met one person with dementia, you've met one person with dementia, but seemingly your own story is really unique and you have a rare dual perspective as both a former carer for your mother and as someone living with young onset Alzheimer's. So how has this shaped your understanding of dementia and your approach to life?
Speaker 4:It's impacted it quite dramatically. Actually I'm naturally a studious person. So when I, my mom was diagnosed at about the age of 55, I probably, like most other people, thought dementia was for old people. I never realized that actually it could affect younger people. And when they diagnosed my mom with dementia I thought really. So I went and studied it. I went and tried to find out as much as I could possibly find out about dementia and specifically the subtype that she had, which was an LPA Alzheimer's diagnosis, which means she had aphasia as well, so she could hardly speak. So I wasn't going to get a lot of information out of my mom. I had to try and learn myself. Little did I know that later on that education would serve me well in that I knew now what's coming, what I can do and and things.
Speaker 4:But it was over that period of time that I learned a lot about dementia, that I realized that there was a lot of loopholes, there was a lot of gray areas that weren't being addressed. There was not a lot of support. It was kind of you get your diagnosis here in the uk, which could be done by either a neurologist or a mental health team through a psychologist after scans and a full neurological workup, and then you're basically told this is what you have and off you go. There's nothing they can do for you. So they just give you a whole load of leaflets and off you go. There's nothing they can do for you, so they just give you a whole load of leaflets and off you go. Now I was diagnosed about 10 years after my mom uh, she'd already passed away at this point, about six months prior, and I went through the diagnosis process and then I was given the exact same leaflets that my mom was given 10 years ago. I know they were exactly the same because I still had those leaflets as part of my study notes and everything, so they were still there. The only thing that had changed was a revision date on some of them was a revision date on some of them. But at the age of 46, which I was diagnosed at, they gave me leaflets on care homes. They gave me leaflets on funeral places, on lasting power of attorneys, which was quite useful. Actually, that one, it was probably the only useful one out of all of them but nothing that actually explained my diagnosis, nothing that explained what I was to expect or anything.
Speaker 4:Now, fortunately, I'd taken time to learn as much as I possibly could, so I knew a lot about it. But it changed the way I see life now, because everything that I've done or planned for or worked for in the future, you know, you always think this is something I'm going to do when I retire, this is something I'm going to do when I'm, when I'm older, when the kids grow up. You know that type of thing and I've come to realize that actually, why wait because you don't know what's going to be around the next corner? Why wait to do it? Do it. So that's what I've kind of learned. So a lot of the things that I wanted to do later on I've moved forward, obviously. Obviously I've got to be able to afford them and that can sometimes be a bit of a struggle, but yeah, so it's it's. But yeah, so it's it's.
Speaker 4:What I've learned is to value life more. I've learned that there are a lot more gray areas, a lot more uneducated people around dementia which we'll discuss a little bit more about later, but it's just changed my perspective of life and to enjoy the moments that I have. I mean, with dementia, we can live in the past. We can even live in the future, so we can get hung on the stuff that we can't do anymore, or we can get hung up on the stuff of what's going to happen in the future, but we can end up missing what we're actually doing now.
Speaker 4:And I think focusing on what we are doing now is far more beneficial and far more important, not just to me, but to my family, to my friends around me, that I live in the present rather than trying to go back into the future. I mean, yes, you're going to do that, it's natural. You're going to look back as things progress and you're going to look back at things and you're going to think I can't do that anymore. You're going to look into the future. And it's not too bad to do that and to be able to look into the future and think, well, I'm going to need the support, I'm going to need something moving forward. What support have I got around me? What does my network look like? Moving forward, which is great.
Speaker 4:But I think that the thing that I'd really like to get across to our listeners is don't stay there, don't ignore the present. So, yes, have a foot in the future, have a foot in the past, but don't stay there. Always try to focus on the present, and that's really what it's taught me. Because we live and work for our education and then we live for our future. We're always planning for the next thing. We can sometimes miss the present, and it's the present that's really important. So I've just taken a step to slow down and I think that's really made a big difference and it's helped me to accept my diagnosis as well.
Speaker 3:Wow, what a perspective to bring in and to share, thank you, and I think it's something that we don't often think about is you know, once you receive that diagnosis? We've heard it time and time again it's as if the minute you receive that diagnosis you're a completely different person, right? And I think it's really validating to hear from you, michael, that just because you know you've received a diagnosis of dementia doesn't mean that you can't still aspire and can't still continue to fulfill your dreams and your wishes and your wants. And in actuality, that's a necessity and even driven even more so by that diagnosis. And I think the other thing I just want to touch on is for us living in Canada and we discussed this a little bit before we jumped onto the podcast but we often see the UK, as here in Canada, as a country who is really leading more so than we are in that dementia care field and supporting people living with dementia. So to hear that even in those more progressive countries who have invested a lot and do a lot of research and have really robust programs, there's still a lot of room for growth and better understanding, better support for people living with dementia.
Speaker 3:And I just you know when you said you were 46 years old when you were diagnosed. I just thought about how close I am to the age of 46. And so receiving a diagnosis of that young onset Alzheimer's really comes with its unique challenges but also its unique experiences, like you shared that. You know you've shared a bit about your plans for the future, but really around how. We previously had a guest who shared that the diagnosis of dementia or the diagnosis of Alzheimer's often changed the perception of how people saw him or the perceived perception people saw him or the perceived perception. So what do you think society needs to better understand about people living with dementia at a younger age and how did it impact your identity and your relationships?
Speaker 4:Yeah, I think the first thing we have to try and understand is that young onset not to be confused with early onset. A lot of people refer to it as early onset, but actually early onset is simply a stage of dementia. Everybody gets that if they're diagnosed with dementia. Young onset is your age and that comes with a unique set of challenges. Most of those that are diagnosed with dementia in any of its types are normally probably 90% of the time, past retirement age. So they could have their houses and mortgages are paid off, their bills are settled, children are grown, grown up, they're out the house, whereas for people like myself we've still got a mortgage to pay for. We've still got children. I have one son uh, he has since moved out of the house. Now he's of that age, but when I was diagnosed he wasn and he was still living with us. He was just finishing off school. So you've got your normal challenges to deal with. I mean you're both young enough to understand what your life is like now. You've got mortgages, cars, you've got your work. You're only theoretically in the middle of your career path really at that age and it's just like you're starting to grow and suddenly all of that is taken away from.
Speaker 4:In an almost. In an instance, I was diagnosed one week. I was told that I would no longer be able to fulfill my job because of the diagnosis and the insurance. So I lost my job the next week. Within that same week, I had to go to the driving license to have my driving license analyzed. They just gave me a map and some directions, which, of course, I could not relay back to them, and so they took my driver's license away all within a week. So not only have you been given this devastating kick to the stomach of a diagnosis, you've also now got the loss of my job. You've got the loss of my driver's license, so everything falls onto my wife now. So you go from two salaries down to one, but you've still got the loss of my driver's license, so everything falls onto my wife now. So you go from two salaries down to one, but you've still got the same bills. Your debt isn't. They still want the same payments. Nobody bothers. So there's those unique challenges.
Speaker 4:And then how do you explain to your boy, who's only just into his teens, what's happening, the changes of your life, and how it's going to impact that that we are I, I am slowly dying. How do you explain that to somebody? And that you know, hopefully I'll remember you when the time comes. You know it's. It's really, really difficult and you've got to think about all of those things at such a young age. And it does change your identity because people suddenly see you as dare I use the expression a leper of old, where you suddenly should be ringing a bell as you walk down the street shouting leper type of thing. You know it's that type of.
Speaker 4:You know a lot of my close friends that I thought were friends just disappeared, people I thought would stand by me and would help me through this event. I don't know where they are, I don't hear from them, I got no text message from them and suddenly, like I changed overnight. But then on saying that, there were friends that I thought were just acquaintances, who stepped up, who thought, yeah, I'm going to be there for you, I'm going to help you out, and so I made new friends. But because I've been the type of person, as a project manager who's done training and all over the world, I tend to be able to talk easy enough, I'm able to network easy enough, I'm able to get to know people and I end up meeting wonderful people like yourselves who become part of my network circle. So any information I need, any support I need, I've literally got it all over the world. So there are advantages to it but a lot more disadvantages, a lot more people. My family, my brother and sister had nothing to do with my mom Once she was diagnosed. That was pretty much the last we heard of them. I told them I was diagnosed and that was pretty much the last I heard of them too.
Speaker 4:So you know, it's sad that people still carry that understanding that dementia you get diagnosed with dementia, in two days' time you're dead, type of thing. It's just like, and everybody, everybody thinks late stage dementia. So you go to somebody and you say, well, I've got dementia. Oh, you don't look like you've got dementia. What does a person with dementia look like? Explain it to me. And then when they're like, yeah, we're sitting in the corner drooling on your rocking chair listening to Vera Lynn, type of thing, you know that's, that's what people picture. But they forget you've got an early stage, you've got a middle stage, which is where I am, and then you've got your late stage, which is what people think of because that's the most devastating stage. But we've got to get to that stage and in the meantime that can take anything from three to ten years or so, some people maybe longer, depending how quickly it progresses.
Speaker 4:But people don't understand that, and so it changes your identity a lot and and it comes with other challenges within your family life as well your relationship with your wife, and that changes slightly because suddenly she becomes I say she, it could be obviously your wife and reverse husband. They become more of a support to you. So you have to be careful and remind yourself quite often that this is your wife first, this is your partner first, the person you love, not your clinician, not the person assisting you doing all of this stuff. And you know it becomes really hard sometimes. And of course you're very mindful of the fact that you are relying on the level to do certain things. So, yeah, it has, I think, a much bigger impact when you're younger than when you are diagnosed with it older in life, because by that time you've pretty much accomplished everything you want to do.
Speaker 4:Some people are already in care. It's expected of older people to start to lose their memory at certain points. It becomes a natural part of aging. But to be so young. Unless I walked around with a bandage on my head, nobody, nobody would know. You know it's like you break your arm. You put it in a pot. Everybody knows that you are injured, but a brain injury nobody sees and nobody understands, because we don't really understand the brain too much. So it becomes really difficult. So, yeah, it's had a big impact on us.
Speaker 4:What can people do to better understand it? First of all, I would say to show empathy rather than apathy. I think that's really important. To try picture what it would be like living in my shoes. I think that's really important rather than just to say, oh I'm, I'm really sorry and you know not really mean it. I think empathy is really important. But then educate yourself. I think the time for people being ignorant around dementia is long gone.
Speaker 4:People who say they don't know anything about dementia or don't fully understand it are just ignorant. It's like walking around saying I don't know anything about dementia or don't fully understand it are just ignorant. It's like walking around saying I don't know what cancer is. You know really. Everybody knows what cancer is.
Speaker 4:People know what dementia is. They just don't want to accept that it's there because it's more of a realistic look for a lot of people. I mean, what do they say? One in three soon will have it. So it's, it's, it's. It's a devastating disease that has zero survival rates and people need to understand these things and understand that. You know, just because I'm diagnosed doesn't mean it changes me yet later on. Yes, old age or later stage I understand, but at the moment I'm still me and that's very important to understand for people to understand. Yeah, I might be slower, I might take a little bit longer to understand something, I may lose my words every now and then. I have to take medication on a regular basis. You know there are things that we have to accommodate, but if you are empathetic you will naturally do that anyway, but I'm still me.
Speaker 1:Wow, michael, my mind is going in so many different directions and I just so appreciate you sharing the many vulnerabilities and realities of your diagnosis.
Speaker 1:And I just go back to what you said about the week you were diagnosed and you lost so much all within one week.
Speaker 1:All within one week. And even for someone who doesn't have dementia or didn't just receive a diagnosis of dementia, losing your job and your driver's license all in one week would turn your life and the life of your family upside down and obviously getting the diagnosis of dementia that sort of started that ball rolling in your life must have been absolutely devastating. So for you to be able to be moving through this journey of your life with, obviously, your wife is so supportive of you, it's just really inspiring to hear of the positive threads that you've been able to pull on throughout this journey thus far, and I think your phrase of showing empathy versus apathy will really stick with Ashley and I moving forward and probably will become something that we think of often throughout our work. So thank you so much for sharing that and actually I don't know if you had anything you wanted to add on that question before I ask our next question, because that was really powerful, michael.
Speaker 3:Yeah, and I guess, yeah, the P. I just wanted to say thank you for sharing such vulnerable pieces of your journey. That most, I totally agree. I think there is such an opportunity for us. Like you said, there is no, there is no cure and I think because of that, people are afraid to understand, to support, to know how to support right. And and you think you know, as you said, the contrast to cancer or a big gash on your head with a, you know, with a bandage, people attempt to oh, I'm so glad that you're getting treatment, they're focusing on the cure, they're focusing on what, what? The positive side of things that you know, your, your friends and colleagues, and so I just really appreciate that you bring such realism and such vulnerability to this discussion, because I think our listeners will feel validated and also feel like they're not alone.
Speaker 1:So I just want to say yes yeah, pleasure, and they're not alone, and, and that's the important thing to understand- yeah, I agree with that because I feel like those of us who work in this sector maybe have a tendency at times to really, of course, try and be positive and spread the positive things that can still be going on in the lives of people living with dementia and their care partners care partners but a lot of times the people who are, who are in that or who are sort of in that the initial diagnosis and moving through life with your diagnosis sometimes they just want to talk about what's real and the realities. And the reality is sometimes it's not all, it's not butterflies and rainbows.
Speaker 4:And it's not, and it's okay to go there. It's OK to go to what I term the dark side, or dementia, behind closed doors, what people generally don't see. But you don't want to stay there, and that's that's the real focus, because if you go there, that's where depression starts. It becomes a lot harder. You start to focus on the negatives rather than any. I mean, there's no positive with dementia, but you can make it something if you wanted to. You can still make things of your life. You are still you. You haven't changed, and I think that's really important. To understand your dreams, your desires. Yes, may have to bring them closer We've got realities to understand here but you can still do them. You can still achieve them and do them now rather than later. But don't stay in that dark hole. Try and get help as much as you can to get out of it, and that's the key Live present.
Speaker 1:I love that advice. So, based on your experiences, michael, what advice would you offer to individuals recently diagnosed with dementia and their carers? I know that you are an amazing advocate for dementia and those living with dementia, so are there specific resources or strategies that you have found to be particularly helpful that you could share with our listeners?
Speaker 4:I can tell you what helps me get through my days. It may not work for everybody, but if you understand the theory behind it, you will be able to, as an individual, find what works for you. Obviously, getting a diagnosis is devastating. It literally takes your breath away For a while. You don't understand. You ask questions. There's a reason they give it or attach the word grieving to the word dementia, because that is almost the feelings that you get when you are first diagnosed.
Speaker 4:You go through your anger stage. You go through your sad, depressive stage. You go through your questioning stage about why me? Why does this happen to me? What did I do wrong? You know all of those things run through your mind. What does my future look like? Will I get to see my children grow up? Will I ever reach retirement age? You know all of those things go through your head and that's okay. I want to put that out there to our listeners. It's okay to do that. It's natural to do that. Don't try to fight it, Because if you try to fight it, you're only going to prolong what I call the acceptance stage, Because that's really what's happening is, you're learning. Your brain, your emotions are learning to accept what's coming, and that's difficult for everybody to do. I've always been a person who's loved music, and so I found for myself. Now it could be anything you. You could enjoy tv, you can enjoy movies it, it could be anything, any type you could be.
Speaker 4:You, you enjoy listening to podcasts, you whatever it is. A quiet place with some earphones in where you can control your thinking, your breathing, almost like a meditative state, helps you, your brain and your emotions to connect and become one and you are able to then start to accept what is coming. Once you've accepted it and I will stress this as well, and I brought this out in my book that during that process, don't make any big decisions, because any big decisions you may regret later on because it could be based on emotion rather than thought process. Your brain is going 10 to the dozen in 100 different directions 10 to the dozen in 100 different directions. You don't know where you're going. You're not educated enough to understand what is happening yet, unless you've really studied and taken time to understand your disease. So don't make any big decisions at this time. Learn to deal with your emotions. Learn to calm yourself down, learn to accept the support and network that you've got around it and build it. Keep working on it. Sure, you may not need support now, but you sure will in the future. So start to work on it now, because your brain is funny. What you, what you what is not normal to you in the future, when I'm really struggling, I will never get to accept. But if I can bring it in now and start to work with certain things now, understanding what I'm going to need in the future makes it easier for me to accept. It also makes it easier for me to accept that support later on, and that becomes very important as progression goes. I've also come to learn that as a caregiver, or as a carer as we call them over here, I think over in Canada, in the States, you call them caregivers, don't you? As a caregiver, you come to understand.
Speaker 4:I thought I knew a lot about dementia. I really did. I really studied every resource I could possibly do to be the best carer for my mom and my dad Living with it. Now I've realized actually I can pick up where I've made mistakes, where I went wrong, what my mom was actually feeling at that point and I was trying to help her to do something that she could no longer do. You know we've got things like.
Speaker 4:She always used to do puzzles. She loved doing puzzles and eventually it got to a stage where she was really struggling with it. So we would sit down with her, we would help her do these puzzles, which helped for a little while, but then it got more frustrated and she used to start getting angry and we couldn't understand why, because this was her passion. She loved doing them. But now I've understood that where before we used to say you've got to force this person to do something my example to this is probably quite a cruel, but it seems to work is would we expect a person, an amputee, to get up and walk on two legs unaided? It's simply not possible. It's the same with the brain once that part of the brain is no longer functioning, we cannot expect that person to do that function now. Yes, the the brain is incredibly smart. It can, for a certain length of time, reroute some of the synopses and you can try and do it some other way, but after a while that fades too and you just can't do it.
Speaker 4:So I've learned there a very important lesson that once that is gone and it starts to get frustrating for the person, as a caregiver I would advise, advise, move on to something else. Move on to something that they can do, something that they might enjoy doing. I found out since stopping work. I had stuff to do in the garden and I just started to get stuck in it because suddenly I had a bomb on my head and, uh, I've actually found out I'm quite good at gardening, and gardening seems to be the place where I go now. Don't overestimate or underestimate nature Little walks, anywhere where there's no cars, type of thing. The amount of relaxation that provides for the mind is unbelievable. It's almost like nature's way of giving, really, and I've come to learn that. So step one is is to accept your diagnosis and allow your time to act to do that.
Speaker 4:But also to remember your family and friends that are really close to you are coming to terms with the same thing. So during that point you're going to have touchy moments. You're going to have difficult discussions that you want to talk about. Not everybody will be ready to have those discussions at the same time, so be patient. Again, it comes back to that empathy side of things. But now I have to be empathetic towards my loved one because they're also trying to understand what's going on in their heads.
Speaker 4:Um, for resources and that, try and do as much research as you possibly can. Try and speak to as many people as you can. Don't ever underestimate peer support. That is a really strong thing. Where I can go? Now we have a group here where I live for young onset and I can go and speak to people who are going through very similar emotions, very similar symptoms to what I'm going through, and we can bounce ideas off of each other what works, what doesn't work. Have we tried this? Have you tried that? You know, just spending a couple of hours in the garden type of thing. That is the type of thing that we can talk about, and the same for a caregiver.
Speaker 4:There's nothing wrong with going to another caregiver literally venting because you need to get it off your chest. I can do the same to somebody else. I can't do that to my wife, because if I go and vent to my wife, she looks for areas where she can try and improve my life. She looks at areas and yet there's nothing she can do and then I see the pain in her eyes. Do, and then I see the pain in her eyes and then I feel bad. So try and try and vent to somebody totally neutral it would be my suggestion on that one. But network, try to get to know as many people as you possibly can. The more you can network, the more you can build up your support, whether you need it or not. Do it, that would be my advice. But only do that after you've accepted it, because trying to do it beforehand is going to be really hard and acceptance is your key. Really. It becomes your friend eventually, because that's how you can stay in the present is by knowing what's coming. You're knowing what you could do. Great. But here I am now and this is what I enjoy doing and I've just found for me, getting involved was one of those areas that became almost like a job to me. I have skills from my work that, sadly, I can't use anymore, but I want to use them and I thought, well, there's an opportunity here, why, why not speak to people? I must say, writing was never one of my skills, so the fact that I came up with a book at the end of it all was quite surprising to me. It was only that I was asked to as an example.
Speaker 4:I kept on falling because of my dementia. Kept on falling because of my dementia. I lose my balance fairly easy. Where I was living had stairs. It wasn't conducive to my type of dementia, so I would fall.
Speaker 4:I went to A&E probably four times, five times in about a year and a half of broken bones. So somebody I'd spoken to said said you know what we have assisted living not far from where I live, which I never even knew about? And she says why don't you give it a thought? This place is how can I put this full of older people? Is that a polite way of putting it? I don't want to offend anybody, but they are older people in this place.
Speaker 4:I am the youngest resident here and they said look, we want to try and help you as much as we can, which was very kind of them, and they did some alterations and that made a big difference. And they said to me would you write your experience of what it was like to do such a major move whilst living with the condition? You know how did it affect you, so we can try and help others. And that's how the book came about. I just never stopped writing and I suddenly realized, you know, hopefully I can help at least one person. That'd be great to try and understand and accept.
Speaker 4:And that's how the book came about. So, yeah, how can you deal with it? How can you overcome? And the advice is to network, accept your diagnosis, allow time for people around you to also accept it and try and live in the present. I'll always keep coming back to that because it's a key feature to living with dementia is live in the present. I'll always keep coming back to that because it's a key feature to living with dementia is live in the present. I think I answered that question.
Speaker 3:Oh, you have very well answered all every question, far exceeded, you know, any expectation. It's it's been, it's brilliant, and I'm glad that you brought up how you came to write the book, because you are the author of the book Dementia you Are Not Alone, and it's a fantastic book. And so now I want to ask you a question about the book, if that's okay. So in your book you discuss that there is stigma really attached to that dementia diagnosis. So what steps do you believe society can take to reduce the stigma and how can individuals contribute to a more supportive environment for those affected by dementia?
Speaker 4:We have to think about really where stigma comes from, and stigma generally comes from passed down from generation to generation. If you go back early 1900s, dementia was hardly mentioned, although it was around, but people were put into metal cages, asylum homes for mentally ill, although they are mentally ill, but you know it was. You were secluded, you were considered, which is where the word dementia came from. You were demented um, literally um, and so people have a fear of it, which, of course, fear then equals a stigma. It's almost the same as and you'll have to forgive me for using this one is that women are bad drivers, you know, or women should always be the one who are cooking, type of thing. Men are the sporty type. That is a stigma that sticks with people based on their gender. Incorrect, but it is a stigma, and the same happens with dementia. We had the same stigma when it came to cancer. You can remember, probably 10, 20 years ago, before any type of diagnosis came out with dementia, you know we would whisper it in the corner. She got the big C. You know type of thing it was, that we weren't to mention the word cancer. It was bad. Dementia is the same type of thing. Don't mention the word cancer, it was bad. Dementia is the same type of thing, but now with it comes a whole load of other types of stigmas about what we can and can't do.
Speaker 4:Because everybody focuses on late stage dementia and, I think, also understanding what dementia is, a lot of people get confused with what dementia is. And dementia actually is simply just a word. It's not a disease, it's not anything. It's just a word that describes a certain set of symptoms and or diseases. So the simple thing is this You're going to have to forgive me for this one, but there's a bit of a bugbear that does always get me with the States and Canadian people is that they put dementia and alzheimer's, or alzheimer's and dementia. I'm like, why do you separate the two? I don't understand that too much, but you see it comes back to stigma. That really because a simple way to look at this is dementia is not always Alzheimer's. Dementia can be Lewy body, frontal lobe, vascular dementia, creutzwein's, that Jakobs one, even Parkinson's disease, huntington's disease. All of those fall under the bracket of dementia. Great. So you have dementia that covers all of those, but then you have Alzheimer's. Alzheimer's falls under that same bracket as dementia. So dementia does not always equal Alzheimer's, but Alzheimer's always equals dementia. So it's that type of scenario and it's people understanding those concepts of what dementia really is, what falls under it and sometimes how we as especially clinicians and people who educate light, the language they use in order to educate people, we have to be careful of because even that can promote stigma and understanding.
Speaker 4:I'll give you an example. I went on a training course not so long ago and the first thing they said on this training course was dementia is not age related. Ok, right, this looks like it's going to be a good course. They've at least got that right. And then they said, right, we want to do some theoretical testing for you to understand what it would be like to do dementia, to live with dementia. So they said, right, so just imagine that you are 72 years old. So they said, right, so just imagine that you are 72 years old. And I thought hold on. You said it's not age related. Why do you choose somebody at 72 years old in order to do this analysis? And the analysis was could you make a cup of tea? I said well, that depends on what stage of dementia I'm at. Right, I'll admit I wasn't very truthful for this person who was teaching it. I didn't tell them I had dementia and nor did they know who I was, so they didn't realize. So we, we ended up having a totally different conversation, as you can imagine, and eventually she says I'm going to go back and rewrite my training.
Speaker 4:So thank you, because that is what promotes stigma, and a lot of stigma is unconscious bias. Sometimes it's the way we think that is. I mean, when you think about it, racism, gender, all of that becomes from unconscious bias. It's the way we taught, it's the way we see things, it's our education or whatever it is that has influenced our mind that that is something that we don't go near and that creates your bias. So really to overcome stigma, a education, but the education has to be the correct one. But really for us to overcome it, what we need to do is have each person analyze themselves. Look at it how do I really view somebody with dementia? And again it comes back to this empathy, apathy, that really helps to understand where you come from and that does help us to overcome our stigma based on that. But stigma, I'm afraid, is going to be around for a long time because it doesn't just go away and you're going to find new ones will pop up as time progresses, as medication gets on, as support picks up, you will still have.
Speaker 4:So my advice is to a lot of people who are diagnosed and to caregivers is simply ignore it as much as you possibly can. I mean, there are some things where people say things that make me cringe, but it's not the right time to discuss it. It's not the right time to go off and wander with them, so I just leave it. Okay, it's their, it's their ignorance. If I get an opportunity, I'll correct them, but always do that respectfully. You want them to treat you with respect. Don't go off in a huff.
Speaker 4:When you hear stigma or something you don't like, do it respectfully. Treat that person with respect and they'll treat you with respect, and I always live by that butter. So, yeah, stigma is an awkward one, I'm afraid, but it comes down to you as an individual who has the stigma, and also the person who is receiving that stigma on how we accept it and when is the right time to correct, and I think that's really important. You had a second part to your question how can we contribute to a supportive environment? Is that one? Yes, exactly. How can we contribute to a supportive environment?
Speaker 3:Is that one Exactly?
Speaker 4:To contribute to supportive environments is to get involved. A lot of people don't want to talk about their diagnosis. I know people who haven't even told their family they've been diagnosed. Not even their wife knows that they've been diagnosed. I'm not sure how you hide it, it's kind of obvious. But they live their heads in the sand type of thing and okay, if that makes them happy, then fine, I'm not going to get involved. It's how they want to do it and each person will do it differently.
Speaker 4:Um, but I think, coming back to your, your hypothesis, that one person, if you meet one person with dementia, you've that one person. If you meet one person with dementia, you've met one person with dementia. It's kind of true, although we go through very similar symptoms and at the end of it you end up with a mixed dementia at the end. So it doesn't matter what type of dementia you have. I think the important thing to understand is we are not all in one boat, but we are all in the same storm. Some of us might have a canoe, others might have a rowing boat, others might have a speedboat, whatever, but we're all in the same storm and we all handle it different. We all go at different speeds, with different paces, at different understandings, and it's okay to do that. Let's allow people to do that and I think once we understand that kind of concept, it makes it easier for us to speak about living with dementia.
Speaker 4:For me, I've come to accept that, yes, this is my life. Now I know that my life only has a certain length of time and I want to achieve things in that time. So I'm going to try and use that time to educate people, to speak to people, for as long as I can. But I also accept that there are days that are really bad and I just can't do it, the days that I wake up in the morning and I can hardly string a sentence together. At that point I also know I need to step back down. I need to allow my brain to try and recover as much as it can, and then you are able to continue. So it's good to have that self-awareness and I think that's really important.
Speaker 4:But to be able to go out and help people, engage with people, don't shut yourself off. It's probably one of the worst things. If you want to enhance your symptoms quickly, if you want to deteriorate quickly, lock yourself in your house, become isolated, and that will happen very quickly. You want to be able to try. I mean, there's no actual scientific evidence that socializes increases your life expectancy, that it slows dementia down. I know a lot of people say it does, but there's no scientific evidence to prove it.
Speaker 4:Um, but in my mind, if it helps, it helps and I think that's a simple way I I live my life by that. It's how I control my diagnosis, how I live my day, that when I get tired I stop. When I feel okay to do something, I will do it. It's in my hands to what I choose to do, how I choose to do it, and so you continue to do it that way. But also remember the opposite side of things is to accept the support that's there, even though you may not need it. Accept it Because people mean well and they want to help you. But by accepting that support now it will enable you to accept it later. So always keep that in the back of your mind. But engaging, try to do it as much as you possibly can.
Speaker 1:That's really wonderful advice, michael, and I can see, depending on the person.
Speaker 1:I really can see how it would be an easy thing to just hide within yourself, hide within your home, not want to share, not want to socialize, and I appreciate you giving our listeners that reminder to continue to live, to continue to go out and appreciate the support that they have, and also really appreciate the words that you gave us regarding stigma, because it really does come down to us as individuals, taking a good hard look at ourselves and any unconscious bias or stigma that we may be carrying, and just to take responsibility for educating others when we get the opportunity to do so, and even comes down to educating those within your own home.
Speaker 1:I have young children myself and we have family members living with dementia, so they are being exposed to that and I am able to educate my own children along the way, and so I think it's important every opportunity we get, to be able to share that with others. So thank you for that. We do have one final question that we ask all of our guests and I'm really looking forward to hearing your answer on this one one, because I have a feeling it will be a powerful answer. That question is what is your hope for the future for people affected by dementia?
Speaker 4:My hope for the future is that eventually dementia will be no more, but I realize that is a long jump. I think it will happen. It will definitely happen. I believe that. But until we get to that point, we have to learn to live with this disease. At the moment we all have to play our part with it. We all have to be able to help each other, to understand it, to talk about it. I would like it to become where we can just openly discuss it like we do any other disease at the moment. I mean, I don't know any other disease and you might be able to correct me with this one. Is there any other disease where we separate age, where we say that we have a young onset of something and an old I don't know of any that I can figure out there, where we put age onto it and that age can also differentiate between our support that we can get? So you know I can't access certain support because I'm not over the age of 65. Why I've got the same disease as what that person has. What difference does it make? That would be my hope for the future. First of all is that we start to recognize the disease for what it is how it affects people and how each one of us can play a part in making it better for people to live with dementia.
Speaker 4:I hope we stop using the term live well with dementia. We don't live well with dementia. We live with it. We live the best we can. But living well to me is not having it. If I was to say somebody says you're living well, I would say no, I would live well if I wasn't diagnosed. That to me, is living well, but living with it. Yes, that that we can do.
Speaker 4:But I also want people to understand that getting a diagnosis does not mean it is your end, not straight away. Yes, it's not going to be the greatest of eggs to life. I put that out there straight away. It's not something I know. I've seen it with my mom and in fact it affects the loved ones probably more than it affects me, because they see it happening day on day. To see somebody deteriorate like that is soul crushing. To see somebody go from being your mother, your brother, your sister, your aunt, whatever it is, your grandmother, from this loving, bubbly person to somebody who does not recognize it. You don't recognize them either because, yes, they may look the same but they're not the same person in their traits, in mannerisms or anything. Sometimes it can totally change a person's personality, especially if they are frontal, temple or louis body. Those are horrible diseases to get, but you know it's so.
Speaker 4:My hope is that we start to understand dementia a lot more, we educate a lot more and it becomes something that we talk about so that we can live with it a lot easier. That we can now. Hopefully we will get some sort of medication or something that will actually be able to slow it down. That's great, but it's only slowing it down, it's not stopping it and not like some of the cancers we've got where we, can you get this cancer now? You can actually stop that cancer? Great, you can carry on living. But with dementia at the moment it's just not there.
Speaker 4:I also hope people can understand that we can still live with this disease and take your, take your time to live it. Um, when we're younger, we almost live a throwaway lifestyle type of thing, don't we? We just go at a hundred speed. We, we want this job, we want to do this education, we want to. Once you're diagnosed, it's yeah, take a breath, enjoy your life now. We don't know how quick it's going to be. Don't try and second guess your disease. Allow things to happen.
Speaker 4:But also a very important point at this point is perhaps just to remember, especially for caregivers, delirium. We don't want to forget that. It's a very real thing. Easiest way to understand that is if your loved one, so if I, was to suddenly change my habits overnight, almost instantly the chances are it's an infection, not the dementia, and you can. That can be overcome and I can go back to the way I am.
Speaker 4:The longer you leave it, the more devastating it becomes to a person living with dementia. But always keep that in the back of your mind. For a caregiver, very important to understand the difference between the two. So if it's gradual change, then yes, it's down to the dementia. If it is a sudden change, the chances are it's delirium and contact your doctor so you can get your bloods and get checked out because that can be reversed. But leave it too long, you're going to have a problem. It can become your real reality and it shortens your time. So that's just a point to to bring in at that point, especially for caregivers.
Speaker 4:But in my hope is people learn to live with it, that the stigma starts to deteriorate and that we can all be accepted for who we are. I suppose you could say that for any type of disease, any change in life, anything really. But that's really what I hope for and it's what I hope to achieve by the time. If I was to do anything, and my legacy I would hope it would be he helped me to understand how to live with this disease, or how people can do that, and I think that would make me happy, and I think being happy is very important in order to dealing with this disease. But find your quiet moments. Learn how to accept, learn how to overcome those anxious moments. When you get them, let others help you. So accept that support and learn empathy.
Speaker 3:Very important. Oh, michael Booth, thank you so much. This has been such a pleasure. I just I don't think that there's much more that can be said, but, as you shared, I hope in your hopes that you can change the narrative around what it means to live with dementia, to change the perspective, to change the stigma, and you've certainly done that today with this podcast. So thank you for that. Done that today with this podcast, so thank you for that.
Speaker 3:I think, yeah, I don't have much else to say, but I did just want to thank you, not only for the podcast, but for opening person centered universes. 12 years old, I've been working in the field of, you know, supporting people living with dementia for 15 years and I learned a lot today, so I want to thank you and it's it's causing me to pause, it's causing me to reflect and and I just you know, I think, as you said, having empathy, as opposed to looking at people living with dementia with apathy, is critical for those of us who are caregivers and supporting our loved ones, but then also just recognizing how far we still have to go as it relates to, you know, decommissioning this stigma around this disease at all levels you know, the age around, the disease, the trajectory, all of it, and so thank you.
Speaker 4:More than a pleasure, and I hope it just helps one person just to reflect a little bit and to help them to live with the disease, or for a caregiver to help their loved one to live with it. That's really all I'm trying to do is to try and just help people take a breath. It's not the end of the world. Just keep trying to do the best you can. That's all you can ask, but do it with a smile if you can, and it's okay to not feel okay.
Speaker 3:Oh, thank you. This has been a true pleasure. I really appreciate it my pleasure.
Speaker 1:Thank you for joining us for this episode of the Redefining Dementia podcast. We hope the insights shared today leave you feeling empowered and connected, no matter where you are on the dementia journey, whether you are living with dementia or you are a care partner, a professional or an advocate. Together, we can continue shifting the conversation.
Speaker 3:This season. We're grateful for the opportunity to bring you new voices and perspectives. As always, we strive to offer practical tips and heartfelt stories that resonate with your experience.
Speaker 2:A huge thank you to our incredible guests who generously share their time and knowledge with us, and to everyone behind the scenes. Our music is written and produced by Scott Holmes, and this podcast was produced by Jana Jones. Be sure to subscribe so you don't miss our upcoming episodes. And, as always, let's keep redefining dementia together.
