Join Colm and an incredible lived experience panel as they discuss the role of the dementia activist, advocate, and champion and the personal and professional partnerships involved in ensuring the voices of those living with dementia are heard.
On this panel, we have the professional partnership representatives of Joanna Fozard and Agnes Houston. Joanna is employed by ‘The Dementia Centre’ as Agnes’ personal assistant and supports Agnes to fulfil her activist role and provides feedback and insight to HammondCare on how to support someone with dementia to continue as an advocate. Agnes has campaigned for the improvement of the lives of people with dementia in Scotland and was awarded an MBE, a Churchill Fellow and has written a book detailing her experience 'Talking Sense': Living with sensory changes and dementia' .
Joining us also on this panel are John Quinn and Glenys Petrie. John was diagnosed with younger onset dementia and alongside his partner Glenys, have used their experiences and knowledge to campaign for those living with dementia and empower those with a diagnosis to live their best life.
To read more about the incredible life story of Glenys and John the University of Queensland have compiled their story here.
There are also many amazing advocacy programs across the world such as ; the Edinburgh Centre for Research on the Experience of Dementia Australian Dementia Advocates Program and this directory of resources.
Together this panel illustrates how activism and dementia care are linked through the incredible efforts of both the individual and their support network.
For all feedback please email firstname.lastname@example.org
Hello to you and welcome back to The Dementia Podcast. I'm your host, Colm Cunningham. And in this edition of the podcast, I'm joined by a number of important guests from Scotland, Agnes Houston, and England. Joanna Fozzard, Agnes has joined us previously on our podcast when she's talked about the important issues of sensory challenges and dementia. And her book talking sense. In this book, she shares her own and other people with dementia's experience of these issues, and I'm delighted to have her back. Agnes is supported by Joanna who's funded by The Dementia Centre at HammondCare to firstly support Agnes, but also to help us and you understand what it means to support someone with dementia to continue to be an activist when they have a progressive condition like dementia. But that's a subject for another podcast and something we're writing a paper up just now on. We're privileged to have Glenys Petrie and John Quinn from Queensland in Australia. So you may hear a few birds in the background because while it's morning with Agnes, the sun setting on the balcony in Queensland, a lot of work is done by our podcast team in researching and preparing for any of our dementia podcasts. But be reassured that we double our reference in briefing taking the time and planning when we have guests who have dementia, so that they have their notes and are in control of their message. In the context of this episode, this is of course really aided by the support of Joanna and Glenys. One final note is to reassure you that we did have a conversation with both Agnes and John, about the fact that we wanted to talk about advocacy, but also talk about the important support that they receive from Joanna and Glenys. And so to recognize at a time who will be talking about them, which is something they actually thought was really important that people understand just all the efforts of the team that go into supporting them and their message. Now we did have a little bit of a debate in the preparation for this with Agnes and John about the word to use. So you may hear us talk about activism, advocacy, and being a champion. Welcome to you all. I'd love to start with yourself, Agnes, to hear about your story, from diagnosis to activism.Agnes Houston:
In the dark ages, when I was diagnosed, I thought my life was over, because that's what I was being told it was a very negative narrative. But how wrong was I? Because I got in with the right people. Other people like myself, who were diagnosed with early onset dementia of the Alzheimer's type, who were feisty, and who thought this needed to change, and that's when the change, and that's when I found myself being drawn in lured in, to becoming an activist, and, but my life isn't over and hasn't been over with help with the proper assistance. I've received an MBE, I've went on and became a Churchill Fellow. But I certainly had to change my lifestyle to suit the Agnes with dementia. And that's something we weren't taught. And I learned that from people like John James, and who were kind enough to assist me and help me to pace myself and manage my life. But unfortunately, I leant too heavily on my daughter. And we realized that after about seven years, eight years that my own mother daughter relationship was changing. And Donna. There was very little time for that fun thingColm Cunningham:
on Joanna, can I ask you what is your role with Agnes the act activist?Joanna Fozzard:
So my role is to support Agnes. I'm employed by HammondCare. To work as her professional PA, I look after her diary appointments, liaise with people who'd like her to speak on their behalf and arrange for travel and her weekly calendar.Colm Cunningham:
So John, can you tell me after your diagnosis, what led you to become an advocate?John Quinn:
at the age of 59, I was diagnosed with what's called younger onset dementia, Alzheimer's, believed to be of the familial type. My mother, two aunts and an uncle, also diagnosed in their late 50s. And 60s, it was a relief to me to get a diagnosis because it took two years from the time I left work. And until I received my diagnosis of dementia, I really got on the advocacy into the advocacy role in about 2015, when I actually attended a consumer summit, and it was the inspiration that they gave me, and the belief that they could change the perspectives for people with dementia. That was the actually the impetus for me to pursue the role as an advocate. And since then, as Glenys describes it, it's been like a rocket ship, it's gone up, and it's still going up.Colm Cunningham:
And Glenys, you've got a different relationship to the one Joanna has just described.Glenys Petrie:
Yes. And in fact, the first time I had a family member who was diagnosed with dementia was with my dad, and I needed to support my mum to support him. And because mum was visually impaired, she relied on me an awful lot as well. And it wasn't long after his diagnosis, she developed dementia as well, was diagnosed with dementia as well. And while I was caring for her, both to remain independent at home, because that's something that I value personally, that people once they've got a diagnosis of dementia are still the same person, they were prior to the diagnosis, and they just need support to continue doing the sorts of things they were passionate about prior to the diagnosis. So while I was supporting her, I was coming home and John at that stage had left work, no diagnosis. And I knew the family history. And I just thought if this isn't dementia, I couldn't understand why a specialist didn't see. But I also recognize even the diagnostic journey can be really difficult in individual because John was a young fit male, and people he didn't fit the stereotype. And that was one of the obstacles in his case.Colm Cunningham:
John, you and Agnes could have focused solely on your needs. But you haven't, can you tell me more about that.John Quinn:
What happened to me was, I kept on hearing the negative negativity surrounding a diagnosis of dementia. And I found out through mixing with other people with dementia, that there's a lot of life to have after a diagnosis. So I, I went on this mission to change the mindset was in the stereotypes that are out there about a person living with dementia, that there is life beyond a diagnosis. But I put a caveat on that. And the caveat is that can only be achieved by someone like myself advocating if they have support, and they adapt their life. Right. And become a champion of the causes of the issues that impact upon a person living with dementia,Agnes Houston:
As Glenys says support people to get their wishes, what their wishes is with dementia and what the outcomes they want, then you will have a happier person living with dementia, and more and more people will be getting to sitting in a nursing home. I can't believe you've got dementia, because they're going to be smiling and happy. It takes a team to get a person living with dementia looking as well as John and I do.Glenys Petrie:
May I add something to that. Thank you. Both John and Agnes touched on something that really comes back to the importance of empowering a person who's been diagnosed with dementia to believe in themselves.Agnes Houston:
Glenys you're right boosting someone's well being in confidence when their confidence is at the lows. Now i many years ago and remember meeting Colm up going back to many years ago. And Colm was great at boosting my confidence and reflecting back to me how well something has gone and how well I had done and I had no have a support worker coming in to assist me at home. And when I was saying I was going to be doing this and I was chatting to her about it. She reflected to me because she supported me to be in a talk locally and with the nurses and and she reflected me in what someone said to me in the toilet And the girl was crying. And it was about a family member, etc. in a good way, you know, that good way she she was she was glad that she'd heard what I was saying. And she was just overly emotional. And I'd forgotten that, I forget, because I always say dementia is more than memory. But it does have memory, recall as well. And I forget a lot of all the things that have been said and have happened. And it's good to have someone that been there and supported you to remind you gently, you know, and that can boost your confidence.Colm Cunningham:
Joanna, Agnes has talked earlier about wanting to have a relationship back as mother and daughter with Donna, can you share any of those early days, I guess, of the baton of activists support being passed to you.Joanna Fozzard:
One of the challenges was working remotely for Magnus. So I didn't meet her for a number of months after taking the role. So we were learning each other through phone calls and emails. I think that that in a way, it gave me a clarity of purpose because I came in knowing nothing, and was able to create the role around Agnes as wants and needs straightaway. I didn't meet Donna for about a year. And it was lovely to to meet her and work out the missing link with Agnes as well. And actually, we we spent quite a nice evening with a couple of glasses of wine sharing how she was delighted that I'd taken on the professional side of supporting Agnes through her activism. Obviously, Agnes has Maria as a support worker in the house. So it's, there's a lovely, clear, dynamic role. And one of the challenges at the beginning was learning where the professionalism stopped. How who I needed to call if I was worried about Agnes, when she was out working and when it was Donna's role as daughter to take over.Colm Cunningham:
One of the challenges is, maybe gatekeeper is the right word at times, because there are so many requests people will receive to speak sometimes without any thought of at the cost of their emotional time, nevermind the financial and everything else. Is that a challenge at times because I know that Agnes' first response is to say yes, which is a great one.Joanna Fozzard:
It is always to say yes. And I think that the desire of organizers to have Agnes able to come is a challenge in itself. They are very delighted if Agnes can come and they take the chance to speak to her in person when she's out to other events to ask her to come. And it is down to me to then look at my diary. A lot of it is logistics, speaking to Agnes and Nick talking to her conference organizers may feel that she can fit in a small talk after she's done three that day, or travel to them the night before do a talk and then Leave her be to travel home again. And it's my role to say no, if you have Agnes, you need to put these things in place, you need to support her from her door back to her door.Colm Cunningham:
John and Glenys, you have another logistic which is that you have a relationship as well, that goes beyond the advocacy, the activism. So if it's not too personal, what are the challenges of navigating both those things,Glenys Petrie:
I think, if anything, something positive is that we're very fortunate to have a very strong relationship in the beginning. And I had a lot of faith in John as a person. And that was important because only six weeks after John was forced to leave work with no diagnosis, which as he said before, took another two years, I had a serious car accident with a brain injury, and he became someone who had to care for me at that time. So in many ways, we're quite a dysfunctional family at different times. One of the messages that I tried to get across in the last few years when I have started to present is that we shouldn't make assumptions about people. We shouldn't assume that people even have someone to support them. We also shouldn't assume that that person regardless of the relationship is actually able to do that. And to talk it's about risk being respectful to the people involved, but also to communicateJohn Quinn:
Glenys is my rock really without her pulling the strings behind the scenes. talking to someone who who wants me to present explaining to them there are certain logistics that are involved in that. You know, getting to the whether it be a forum, whether it be some other audience requires a lot of planning beforehand, you know, getting there so many hours before hand so that I become settled, making sure that there's a quiet area for me so that I can settle down and have a calm frame of mind. So that when the opportunity presents itself for me to present, I can do that. So this is right, we're a team now. And I acknowledge that publicly, I couldn't do what I do without Glenys' support. Fantastic.Colm Cunningham:
One of the things that I have to admit when we're talking about conferences that I, to be honest, nearly fell off my chair, when it was said to me was to have a room that was only for people with dementia. And I couldn't understand that at the start until Agnes said to me, But wait, I actually need to be able to control some space, I need to be able to go No, this is for me. And she actually meant, Donna and, and maybe on occasion, Joanna not coming in. Because, you know, I was really surprised at the need to plan at many levels to live for the space not only to for us to work as a team, but also for you to have space when you need it.Agnes Houston:
It's a great loss for me that I don't have Donna, who knows me so well, to travel. But because I really want to do what I've chosen to do that day. I have Joanna and I put things in place so that, yes, I will have a smooth journey and feel safe. But that was quite a transition for me. I thought when Donna couldn't support me through life circumstances, that my activism, and it was over, and it's not. But I did learn too that I need to prioritise, and I do prioritise. Because my brain gets tired, my energy levels are depleted. And I know I'm working to see the creative side. So Joanna and I have that conversation and I maybe have an art course on a Tuesday or something that I want to do. It's downtime. And there is no way there do anything adorn as precious to me. So I know time to get more life and a balance where I can play with the creative side of Agnes and enjoy that side. So I'm finding a more playful side. And why can't How can I do that? bi because I now know that there's people like John and in the UK, from the deep network that can do and carry the message on so long as you can hand the baton on without retiringJohn Quinn:
Glenys and I have said over the last 12 months, I suppose maybe even longer that all champions of dementia have a used by date. Yes. So what we need to do is put in place, what we call a mentoring system, where we can mentor up and coming activists if you like, the difficulty we find here in Australia in particular is that even though the the pool of advocates is increasing, not all of them want to present. Some of them present quietly. Others don't want to appear publicly, you know, to promote and put forward the issues relating to living with dementia.Glenys Petrie:
I can add to what Agnes and John just said as well Colm was that, well, in our experience, we can only speak from our experience. But we didn't become the type of champions and advocates. So we are today immediately overnight. Initially, when John it was Ita Buttrose that turned our life around. I've got John back. It was four years post diagnosis. And he when he met her and she was so humble, and she talked about we talk with him at a function of one to find out who he was as a person, what was he interested in, and he walked away from that evening, and he spent the next four days walking around saying Glenys I can do this, I can live well with dementia. And we grew as, as the advocates through the advocacy and all of this, through the next few years, we didn't suddenly have a diagnosis and do this. And that's where I think the mentoring that John is talking about is a valuable aspect to be considering. But also acknowledging that what what people with dementia need to understand is that if they choose to do this, no one's expecting them to do it overnight. People that like ourselves will support them and And recognizing that, again, as we've touched on many people who are diagnosed with dementia live alone, but they have very powerful voices. And the thing is, we need to recognize and tune into what, what did they do before their diagnosis? What are their strengths and their experiences that they can bring forward into this. And in John's case, he wasn't an academic, as I was an educator as well. And in Agnes' case, a nurse. So we sort of had a few skills beforehand. And others have that too. Likewise, those who didn't have those sorts of experiences have so much else that they can bring, they just have to recognize they can do it. And that's why they're supportive.John Quinn:
Creating a supportive environment, to empower them to be able to do this.Glenys Petrie:
It's all about empowering someone to recognize their strengths. Yes.Colm Cunningham:
And like this podcasts, what we're trying to do, and we're writing up, some of Joanna and Agnes is experience, so we can share some of the wisdom and I'm realizing we should actually get you guys to review it as well, because you'll have stuff to add to it in terms of what you've learned. On the way I guess. I wouldn't mind knowing if you've got any pet peeves, or what I mean by that, is there anything in terms of turning up at an event or planning for them, where you want to say, Please, this, this constantly happens. And I would really like people to recognize this before they ask us to be involved in somethingJohn Quinn:
OK, a couple of years ago, Glenys and I were invited to a conference, and I was always shedule to be the last presenter before morning tea. Now, as with what often happens at conferences, there are hiccups, they fall behind time. So by the time it came for me to present and I had I think we planned for me to speak for 25 minutes right. Now the guy that was the facilitator, the MC on the day, when I got up onto the podium to present he very quietly said to me, John, we're running out of time, can you cut your talk short,Glenys Petrie:
it was John, the person who was diagnosed with dementia that was asked to hurry up and shorten his presentation, not the person on the panel, who wasn't even invited to do that. And that was one of the worst experiences that we the actual conference was great. The organization of the conference beforehand was fabulous. The support to get to the conference was great. But when it came to actually getting up and presenting the two experiences we had as a people who were diagnosed with dementia, to our knowledge, nobody else was cut short. And it was purely because they had gone over beforehand. And we were running into a lunch or morning tea break, and they wanted to quickly catch up. So John's 25 minutes came down to about 15. A person with dementia can't do that.Colm Cunningham:
Yeah, so chairing effectively, is one part of that. Also, I would argue giving probably at least double the amount of time you would be giving to a speaker without dementia as the other so that is the time as well, that. So those are things I certainly feel I've learned from speakers who we've had with dementia. Agnes, you're you're smiling there, I can see. You've obviously got a pet peeve. And Joanne has probably got one as well.Agnes Houston:
I think what you just said John and Glenys happens all over the world. And I remember it didn't happen to me. But it happened to someone speaking for the first time in Europe, and I was the help, you know, supporting and saying Don't worry, and this, that and the other. And everything that could have went wrong, went wrong. There were technical problems. And I think there were three of them. And this one person, it was only person with dementia. Out of the three and he paid the price. And he was devastated. He felt he'd let people down. And it took us a long time to get his confidence up again, to speak again. It had a really had a big impact.Colm Cunningham:
I think I touched on it before with the conference organizers needing to be responsible for looking after the person with dementia getting home. They need to remember that it their duty doesn't stop with booking a train ticket at the end of the conference. And sometimes actually it's worth the person with dementia traveling the next morning once they rested an extra night in a hotel means so much more to arrive. Home rested,Colm Cunningham:
you're absolutely right. And I guess now we are focused on some of the things people could do better and the importance of what you've all learned. It would be wonderful, given that we're talking about activism, advocacy, champions, whatever word we want to use. Agnes is there a moment of activism that stands out for you that you feel I'm so glad I led that, or I was part of that.Agnes Houston:
I think it's Talking Sense, my Churchill Fellowship, and because, and you know I quietly and I know it's naughty of me to feel this right? So I'm going to tell you there anyway, sometimes I feel that smugness. And because I spent so long listening to hear, that's not part of dementia, you can't talk about this, maybe you should seek another diagnosis, that's not dementia, when it was about experiencing the sensory side of it, the loss is especially the loss of taste, and smelling in awful smells. And so yes, and, and quietly have that smug, well you got to believe it is part of dementia, and you can't see it anymore.Colm Cunningham:
One of the other things about talking senses that you managed to get what you need, it just took you some time, but you always did it with the smile, which I always think is a very, very powerful tool as well. And I think one of the things that I recognize in terms of your activism is the power of the way you've gone about it. John, for you, is there a particular?John Quinn:
there's several but there's two that probably are the most prominent, in my mind. The first one was several years ago, I was asked by what was called Alzheimer's Australia to appear on a radio program called radio Nashville, life matters and are presented with the then, She was a CEO, of Alzheimers Australia, right. She and I are on the same program together and what the idea of us being on the program was to promote what's what was then called the younger onset dementia key Worker Program. Now that program had been operating for two years, there were rumors around that the federal government were weren't going to fund it anymore. So the CEO of Alzheimer's Australia wanted me to get on the rail onto the radio program, and promote the merits of the program. I thought that was a great opportunity. I shared my experiences with the audience about what it was like having a key worker, and how it changed my life. And about a week later, Glenys and I were invited over to Alzheimer's, Australia, Queensland, main office, and the meeting was set up so that new advocates could meet some of the old advocates. Right? And, and have an afternoon tea. And as it turned out, one of the new advocates was a lady who was actually that afternoon when I was presenting on the radio program, had received her diagnosis of dementia. And as you can imagine, and I'm sure Agnes can identify with what I'm about to say, it was devastating. She walked away, thinking, What am I going to do with the rest of my life? She had no hope. But because I promoted the positivity of having support, she all of a sudden thought, Well, yes, there can be life beyond a diagnosis of dementia. So, so that when she met me on that special occasion, she walked up to me, she gave me a big, big hug. And I think she even kissed me and said, Thank you very much, John. You've changed my life. And the other example I was about to give Glenys and I'd like you to share that with with the audience today is working with students at high schools.Glenys Petrie:
Do you know what I love? I love the fact that you and I think like so many times because I thought of Colm asks me what will I say and I thought it straightaway. We've been for the last two years even through the COVID lock downs and things like this working every week with a private Catholic college with their grade 12 students. And they stay with us for a fortnight where we do work shopping, and we raise dementia awareness and they become dementia Australia's dementia friends, and then a fortnight later we get another cohort. So far we've done about 440 staff, I'm sorry, 440 students, about 200 staff and the vision for the rector is that the All of the staff, which is 1000s, basically, because it's from grade 5 to 12, college, the parent group will be offered and up to about 10,000 old boys will also be offered this program. And we've actually experienced stories back from those students who were going to go into new career pathways and into their life after school, where we know of practical experiences, they've taken that knowledge from what they learned out into the community, and they've supported other people with dementia. And I just feel so confident that our future is in good hands, because these are our change agents for the future. And the people who are going out and going to make a difference in their careers in their life.John Quinn:
And Agnes, you and I telling the positive stories of how we can live well with the condition is changing the mindsets out there, and inadvertently changing the stigma. Yes. about dementia, you know, because these young citizens, right, don't have preconceived ideas about what it's like living with dementia. So telling our stories, right, they're going to share that with other people they interact with, and they'll be sharing positive stories about, Hey, I met someone with dementia today. And his name is John. And even though he's got a diagnosis of dementia, he's, he's living well within his community.Agnes Houston:
And I think that's a big message to carry. And then it just made my heart soar really, that this is happening in this is a way the children are our future. They are the citizens of the future. And that's the way to go. And if Donna was here, she would hope in response to that is she was constantly getting emails and phone calls, and saying you change my life to make a difference. Gives me a purpose in life. You know? and with support, I can still do that. To see other advocates when I met someone for the first time, I remember it very succinctly. And she her confidence was gone. And now she is out there campaigning, doing advocacy work doing everything that we talked about. And she's a total different personality, the smile on her face the bounce in her walk, it is it is a magic ingredient, this advocacy work and passing on the baton.Colm Cunningham:
This has been such an important conversation and I hope it has shared just some of the things that we need to think about. And the team involved in supporting somebody with dementia to be an advocate, activist or champion. And I thank all of you for taking part today, the dementia podcast will continue to provide a platform to discuss these important issues. And as always, we really welcome your feedback. So do email us with your ideas and thoughts to email@example.com. I want to thank again Donna for her support of her mum and Agnes and Joanna Glenys and John for taking part and to you for listening. Bye for now.