In our debut episode of the Aged Care Enrichment Podcast we spoke to the author and long-time dementia advocate, Christine Bryden, about her life with dementia and her work as one of Australia’s first dementia advocates.
Christine was diagnosed with early onset dementia in 1995, at the age of forty-six. Her life transformed immediately as she left her job and focused on restructuring her life and raising her three daughters.
In the following twenty-five years she has been incredibly outspoken on her life with dementia, including writing five books about her experiences.
As you will hear, Christine is passionate about addressing some misconceptions of dementia and talks openly about the changes that she would like to see in the way that people with dementia are viewed.
Ash: Thank you very much, Christine, for joining us on the show today. Let us begin with our first question. In 1995, you were diagnosed with early onset dementia. Can you give us a bit of background as to what your life was like before diagnosis and the diagnosis period?
Christine Bryden: I was absolutely frenetic. I cannot describe it any more than that, I just seemed to be driving the girls to school and home in the dark and getting massive migraines and just working so, so very hard. Just really, really working hard as a science adviser to the Prime Minister. Prime Minister’s Hawke and then Keating, just a massive amount of work. And I was getting all these migraines, so I went to my doctor and in the end the doctor suggested a headache diary, various tablets that did not work. In the end she sent me some brain scans, and it was then that the brain scan showed that I had a lot less brain than I was meant to have for someone of that age, I’d have to calculate what I waas, I was forty-six I think. So, then she sent me straight away to a neurologist and I went, and he did further tests and diagnosed me as having early onset dementia. He just kept on reviewing me every few months and then every year and it was still the same. He tracked me as slowly declining, but at the beginning, it was really scary because he thought I might decline very fast, and not be able to write by the end of the year, so this was May just diagnosed. So, basically, I just kept getting told just to go home and get your affairs in order, which is just awful. Because my youngest was nine, I think. And my eldest has just gone to uni at nineten. So, yes, it was really alarming. We just moved to a new house, that is how I remember it to. Just taken out a mortgage, so just heaps of things were worrying me at that stage.
Ash: Yes, I can imagine. The amount of change that happened in such a short notice that sounds like moving to a new house and then you stopped work around that time as well, didn’t you?
Christine Bryden: Yes, moved house on a Friday, final diagnosis on Monday. Told immediately to stop work immediately. So, I stopped work on Thursday. Yes, it was— yes just huge. And I still have migraines, but they have slowly eased, I still get them when I get stressed.
Ash: Around that time as well like quite early into your journey with dementia you started speaking up about your experience with dementia, did not you?
Christine Bryden: Yes, I did.
Ash: Why was that important?
Christine Bryden: Getting diagnosed for some relief for me, but it is not always a relief. A lot of people feel a stigma. You say you have got dementia; it is just terrible. I just felt that there were so many misunderstandings, misapprehensions, people did not understand and weren’t prepared to ask. No one was speaking up for us at all. It was like we have become the silent people, just locked away. And yet, from diagnosis of the final stages is a huge journey. Most of the time, this can be ten years or more and, yes, it was the assumption made that the minute you get diagnosed you are at the end of the journey. So, I wanted to speak up about that and to get people feeling more encouraged, to give people getting diagnosed more hope.
Ash: Absolutely. And it has been twenty-five years since that diagnosis and since you started speaking up, what is the journey in dementia advocacy for you? What has that been like?
Christine Bryden: It’s has just been exhausting but worthwhile, really worthwhile. I mean now, from the isolating at the beginning because nobody was speaking up, a few people overseas but not many– none here. But now after ten years, others have joined in. And lovely, they have said to me that I inspired them to join in, so I am here to speak up because it felt the stigma of dementia, was just too big. So, it has been rewarding, but totally exhausting. I have really wanted to step back now because of exhaustion.
Ash: Yes, I think you have probably done enough in twenty-five years. That is a really long time to be involved in anything but advocacy, that’s terrific work. Do you think that there has been progress made in dementia advocacy and people’s awareness of it?
Christine Bryden: Certainly progress in advocacy, there are more people advocating now. Awareness, I feel like we keep on sliding back twenty years ago. The same issues keep coming up, and I think why is that? Why cannot we move ahead? I mean, we have probably– it is probably three steps forward and two steps back.
Ash: When you say that the same issues keep coming up, which issues are they that keep recurring?
Christine Bryden: That idea that people with dementia really odd and cannot be spoke to about in their presence, and, yes, just that we are all really odd. And that dementia means the minute you get diagnosed or drooling and, in a wheelchair, is not true. Not true at all.
Ash: What does dementia mean to you, Christine?
Christine Bryden: I mean really, it means for me, I have been much, much slower than I was. And I forget a lot of stuff. The doctor said you would expect that. I am much slower to process things and I find it difficult to think and speak. The memory is ridiculous. I mean, I turned to call my husband to say something, open my mouth and I feel like fish was gone, just gone, while I tried desperately to type it in to iCal as my memory jogger and it is gone. It is annoying, I should be more upset maybe, but I am not. Most of the time it feels overwhelming, and defeating, and embarrassing but then a lot of the time I just forget I have got it; I just paddle along as normal because it is a slow decline, it is normality now. It’s become normality. But if I had suddenly changed from where I was to now, it is a huge difference.
Ash: What are some strategies that you developed for making things a bit easier as your journey progresses?
Christine Bryden: I try and take restful days, I space out things I am meant to be doing along the weeks, so I am not trying to do too much at once. And I use iCal for that. I was trying to use notes and then I forgot where they were. So, I use iCal to parcel out my days, and to remember things right. If you were to ask me what did you do yesterday, or last week, I’d say just hold on and I would look at my iCal to look up what I did because I cannot remember. Or what are you going to do tomorrow, I don’t know just let me look and check. So yes, those are the strategies because I do not know where I am in time, and where it goes, and what is happening.
Ash: So, it sounds like you have found a way with iCal to use technology to remind you to—
Christine Bryden: To write it down. Yes. And with books, not to worry about it, because I like reading, can’t remember what I’m reading, or who it’s by or where I am, but it is okay. What is good about Kindle, I read books on Kindle, I say I think I’ll read that book and I type in the thing and Kindle says it is already in your library but is bought last year or last week, or oh dear! no memory of it at all.
Ash: The good thing about Kindle as well as it remembers your place, right?
Christine Bryden: Yes, it does. And you can search. I often search, then I can put their name in and it would go back through the book and show me what they did, I like that. I find it reading a real book harder because I cannot do that. When I find a word I cannot remember what it was, you push on it, and it tells you what it means.
Ash: I think I remember from another interview, you said that you would keep some notes on the books that you were reading. Is that something that you still do? Or does Kindle allow you to shortcut that?
Christine Bryden: Kindle allows me to shortcut that, but if I am reading a real book, I have to write notes.
Christine Bryden: Because I cannot remember who is who, and what they have done. So, I write that in a piece of paper and use it as a bookmark.
Ash: Well, speaking of books, in the last twenty-five years, you have written five books. That is impressive by anyone’s standards. Is writing something that has become more or less difficult over the years for you?
Christine Bryden: Much, much more. Yes, much, much more. I have to— if I am looking up stuff, I really do have to type loads and loads of notes so that I will remember what it is I want to write. Yes, it is amazing. I cannot believe I have written. And if you were to ask what were the titles, I wouldn’t know them all. It’s difficult really.
Ash: Do you feel like the thrill that you got from— the feeling that you got from writing your first book, Who will I be when I die?, do you feel like you are getting a similar feeling from writing books now or recently?
Christine Bryden: Actually, no. Probably not, it is a good question. I do not think so. They are just books. I cannot believe that I got the first book sell in French, even in Japan.
Ash: Yes, I actually got your first book in research for this interview, and I got it on the Kindle as well. So, it is definitely still available. Something that you wrote in the start of that book is that it was largely for your daughters, and I imagined the place that you were in at that time that you wrote that it is quite a different place to where you are at now?
Christine Bryden: Yes, it was. Because when I wrote that, it was the expectation that it might be not able to write within six months to a couple of years because the diagnosis said that I would decline rapidly and then go into a nursing home within about five years, and be dead within three.
Ash: So, there must have come a point where you started to seriously question the prognosis that you were given there?
Christine Bryden: Yes. And I’d also have compared notes with other people who have been diagnosed and we are all been given the same prognosis. So, we are challenging that now. One of my books is more for my daughters and that’s a memoir. Before I [Forget], yes.
Ash: Back in your first book, it is a quote that you write that I find really interesting. In your first book, Who will I be when I die?, you wrote that as you progress in your journey with dementia, despite any reduced functioning that you will be, “perhaps even more yourself than you have ever been.” What did you mean by that?
Christine Bryden: Well, I see dementia as a journey in which towards your inward self inner self. And I talked about masks, I can’t remember which book maybe the next one. You lose your outer mask, of what you do, where you live – that cognitive sense of who you are. And then you go inwards towards an emotional self, and then towards your inner spiritual self. That is where I think dementia can be seen as a journey inwards towards the spirit of the true inner self.
Ash: And I guess throughout all of these you still feel like you retain some sense of the same identity.
Christine Bryden: Yes, I still feel like me.
Ash: Yes. Does that feel like a misconception about dementia?
Christine Bryden: Definitely, and I think in my latest book, I cannot remember the actual title, but I do say, I will still be me no matter what stage even dying, I will still be me.
Ash: What other misconceptions, do you think need to be addressed in the way that people conceive of dementia?
Christine Bryden: Well, the idea that it is just losing things. I think we gain ourselves. I mean, we might lose the busy outside-ness but then you have got more time to be truly your inner self. And then I do not want people to think of it as something weird. It is a disease like any other. There used to be the big C of cancer now it is the big D of dementia, I wanted to get rid of that as well. Because it is a hidden illness for most of the journey, but it is an illness. It is not something weird and odd. So, people need to just treat us like normal human beings.
Ash: Let us change tack a little bit here. In your journey with dementia advocacy you have seen quite a few aged care facilities, right? Here and in Japan, and Europe as well, I believe?
Christine Bryden: Yes.
Ash: Do you think people are treated in a way that is befitting to somebody journeying with dementia?
Christine Bryden: Yes, I have seen it in Japan, not so much here, in some of them in a few in the smaller ones where there is lots of staff. Because people with dementia need one-on-one connection, not just physical care, they need a real people connection, they need staff who have time to listen and to engage, not just fuss about whether we’re dressed and fed. We need a quiet environment. Quite many of these homes seem to have TV and radio, and clattering and banging, and I would find that really hard to be in that sort of environment.
Ash: Why do you think there is less emphasis on one-on-one connections in some homes?
Christine Bryden: Money, not enough money to put proper staffing levels in. What we need is more staff, and then staff that are willing to treat people with dementia as human beings as real people.
Ash: Do you think not just more staff but the more regular staff, people who you can build a rapport with and know your story?
Christine Bryden: Very much so. And I do not want staff talking over my head to other people. I want them to be connecting with me. So yes, very much, people who know your story, now I’ve been to facilities in country towns, where it’s being positive, people know your story. In Japan, as I said, so yes. It is having that respect for a person with dementia.
Ash: A few years ago, correct me if I am wrong, you and Paul, were looking at some different facilities and aged care facilities. Can you talk a little bit about what you were looking for when you were going around?
Christine Bryden: Well, really it is that sort of — not so much what the building looks like or does furniture or what have you but the staff, how did the staff treat people. It is a bit depressing now because I have not found anywhere yet so, we’ll wait and see.
Ash: Yes. Are you still actively searching?
Christine Bryden: Not yet. And I picked it up again in a while.
Ash: Do you think—
Christine Bryden: –and then write something for our daughters to sort of follow up on.
Ash: Do you think that you will know it when you see it, the right place?
Christine Bryden: Yes, you are right. That is, I’ll know it when I see it and as yet, I have not seen it. In Japan there was one place.
Christine Bryden: And I do not speak Japanese.
Ash: But you have spoken about there being some level of connection. You do not really need to speak the language if you can feel that someone is with you, right?
Christine Bryden: Very true. Because I have always felt really connected in Japan, one-on-one, spirit to spirit. I think it is because you have lost that cognitive outer mask. So, you are reliant on the emotional and spiritual self.
Ash: Do you think that you are more aware in some ways? More aware of emotions or environments, or feeling?
Christine Bryden: Much more. I was very uptight, I think, when I was at work and not a people person at all, and just totally task-oriented, and yes, I think I have become probably a lot nicer since getting dementia.
Ash: Why do you say nicer?
Christine Bryden: Well, because I am more people-oriented than task-oriented.
Ash: What kind of things do you spend your time on these days?
Christine Bryden: Well, connecting more to people and to nature, taking the dogs for a walks, reading the Kindle books that I might have read it before. More time Face Timing with grandchildren because obviously cannot meet physically at the moment.
Ash: It seems like the writings of yours that I have read and through you speaking in interviews, it seems like you have maintained a good sense of humour and humility through your journey, would you agree?
Christine Bryden: I hope so. Yes, without the humour you would be a bit sad.
Ash: Now, Christine, you have spoken about the idea of prompts when helping people with dementia or caring for people with dementia, the idea of having things around the room, or around them, that remind them of certain things. Can you talk about that?
Christine Bryden: Well, I have seen facilities where the room has got lovely pictures of family, things that were obviously important to the person, like quilts or whatever. We need to be in a personalized environment. So yes personalized environments are very important, as well as prompts, when people are connecting with us. It’s no good though correcting us and saying no, no so and so is dead for years, or I don’t know that is your daughter not your wife. Because all of that can be very upsetting – we can’t help if we forgotten things. Also, when we are struggling to speak, it’s good to prompt a little bit so that I might be waving my hands about and try to come up with the word. Just help with that word, with a question mark at the end of it. So I can say yes, that is the word. So, I feel in charge of what I am saying.
Ash: Yes, I can imagine it would be frustrating to feel sometimes that you cannot say what you want to say. And then someone just takes over for you.
Christine Bryden: Absolutely. I have seen that happen so many times, with caregivers just doing that. And then the person says, “Oh well, I am going to give up talking because it is all too hard in their eyes,” and nobody is encouraging me. I think people with dementia need a lot of encouragement, a lot of hope, a lot of help, supportive help, encouraging help, and pats on the back about how wonderful they are doing because another thing, the struggle is huge. And yet, it’s like struggling around with one leg or one arm, because you have got half a brain. People need to realize it is a really big struggle and to say we are doing really well, considering–
Ash: Does your husband, Paul, provide that encouragement to you?
Christine Bryden: Yes, he does. Definitely.
Ash: Can that be as simple as just recognizing when you have worked hard for something and it has come out? or what sort of situations do you think you respond to praise well for?
Christine Bryden: Just a little. I do not need praise so much just to encouragement and great, and take a restful day and you’ve done so much yesterday. It is not so much praise as recognition that it takes a lot of effort just to live.
Ash: When you engage in a task that feels quite difficult, what does the difficulty feel like? Let us say it is struggling to remember something or struggling to focus on something, what does that feel like exactly?
Christine Bryden: Well, it does feel embarrassing because I am mentally quite bright. I just cannot do it. It does feel totally overwhelming and defeating and trying to remember something that I was about to say, or about to write, and it is gone, that is so annoying, so frustrating. I just cannot describe how frustrating that is. Paul is very good at soothing me. He says, look “When you do remember whatever it was you are going to say, it will feel like a new thought” So okay, just go with it, it is okay.
Christine Bryden: Then I might remember a day later, and it does feel like a new thought.
Ash: What do you mean a new thought exactly? What do you mean by that?
Christine Bryden: Well, I am trying to say something to Paul, and I have forgotten what it is. But the next day when I try and say it, and I remember it, I say it. I don’t realize it is the forgotten thought from yesterday.
Ash: Okay. So, it is just it is a new point to you, but Paul may have heard part of it before.
Christine Bryden: Yes, exactly. But he never says, you told me that earlier because that is really embarrassing, because I am saying, Oh! did I?
Ash: Is it frustrating to be reminded that you said something before?
Christine Bryden: Very. Not just frustrating but really upsetting. Because it’s pointing out your deficits. It is a bit like saying, “Well you—” I cannot think of equivalent with enough realness, anyway.
Ash: I could see it feeling maybe a little bit pointless to point it out as well. Why would you bring that up to kind of situation?
Christine Bryden: Yes, what good is it. To whom it is a benefit.
Ash: It sounds like in general Christine, that your life does not seem to be based around dementia in the way that a lot of people would assume someone with dementia’s life is.
Christine Bryden: Exactly and that is really important. Dementia is only a small part of life; it is an illness. So, if I had some other illness I can’t think of one, and not curable, it could it be with me forever like diabetes or something. I would not want to be reminded of it all the time. I just live as best I can while I can and not dwell on this dementia thing. I try to set it aside. So this was not easy, but yes.
Christine Bryden: What I would like to say to people being diagnosed, it is not the end of life. It is a new life in the slow lane of dementia, you’ll change, but it is not all bad.
Ash: There is something else that you said that I really liked, which is dementia is a change in the way you experience and relate to the world.
Christine Bryden: Yes, and you do. Very much so. I cannot put my finger on it exactly. You will appreciate the world more. You are not in-charge of the world like you once were. You have to give up things and try and be comfortable with that.
Ash: Absolutely, that sounds like again, a lot of humility and self-acceptance is required to kind of thrive in this environment.
Christine Bryden: And I think that caregivers can help us do that.
Ash: How so, what do they do?
Christine Bryden: Encouraging us, and helping us, and supporting us to feel more positive about life.
Ash: What ideas about dementia that you would you like to see changed, Christine?
Christine Bryden: Well, because it is a hidden illness, like other hidden illnesses, that there are medications that can slow the progress of the sentence, that’s about all I can think of in the moment.
Ash: In the future, how do you think you would like to see people with dementia treated differently?
Christine Bryden: Just definitely like normal human beings, just that— it is not a lot to ask. But what I see is people with dementia treated as physical objects of care, not as human beings worthy of relating to. That I think is tragic. It is not a lot to ask. For both family caregivers and professional caregivers relate to people with dementia, as fully human, worthy of respect and honour and recognition as people.
Ash: That really is not a lot to ask, you are right. That sounds like the bare minimum to ask.
Christine Bryden: Yes. But it is not what happens. And to take away also that preconceived idea of what dementia is and isn’t because I have had people come to help me to then take one look at me and say, you don’t look as if you’ve got dementia. And I think it’s outrageous, how do they think a person with dementia is meant to look? So, take away all preconceived notions and say, all people could have dementia, all appearances, people of all appearances could have dementia. So do not make any preconceived assumptions.
Ash: Absolutely. Yes. I think we are almost out of time, Christine. We just have a few more questions. You touched on something before that I wanted to return to. There is a lot of focus on what people lose to dementia. Can you speak a little bit more about what you have gained through your journey?
Christine Bryden: Well, I suppose I gained a lot of friends and contacts who also have dementia and in the Alzheimer’s movement all of that. That is on one level, I have gained whole new relationship with friends in Japan, but then also in me, I have gained a whole new idea of what it means to be a person, sounds odd doesn’t it with dementia but, yes.
Ash: What sort of things you do identify as more important in being a person now than previously?
Christine Bryden: Inner self, who my inner self is. Yes, that journey to the inner self and having time to just be, previously I never had time to just be.
Ash: Wow, I imagine rushing around all the time and now you can just sit a bit more. Do you have any advice that you give to people who have been newly diagnosed or anybody who has been diagnosed?
Christine Bryden: Have hope. There’s treatment for symptoms has a loss of hope, do not despair. We are all different, our journey is different. But live the best you can while you can and just enjoy every moment of the day and try to make every moment of the day one of wellbeing, because then by the end of the day you will feel good. It’s a journey and enjoy it, a journey in the slow lane, enjoy it.
Ash: Fantastic. Thank you so much, Christine. I think we have gotten through quite a lot of questions here. Is there anything that we have not touched on that you would like to talk about?
Christine Bryden: No, I’ve made notes here and they’re all done, and my brain is gone.