The Dementia Podcast

Talking Sense: understanding sensory challenges and dementia

February 18, 2021 Professor Colm Cunningham
The Dementia Podcast
Talking Sense: understanding sensory challenges and dementia
Show Notes Transcript

Join Colm and author of “Talking Sense: Living with sensory changes and dementia”, Agnes Houston MBE as they discuss sensory changes in dementia, its limited awareness as a symptom in the field of dementia, and the journey to the release of her internationally acclaimed book. Together, they explore Agnes’ journey as a campaigner for the voice of people with dementia, her own dementia diagnosis, and her subsequent search for independence and understanding of sensory changes people with dementia experience. 

“Talking Sense: Living with sensory changes and dementia”, authored by Agnes with Julie Christie outlines Agnes’ experience and provides detailed insight and support to those experiencing sensory changes. As mentioned in this episode, ‘Talking Sense’ is available for free PDF download and for purchase as a print version here and is also available for free audio download

Colm Cunningham:

Hello to you. Welcome again to The Dementia Podcast. I'm your host, Colm Cunningham. And today we'll be talking sense. That is the launch of the audio book version of talking sense. This book helps us understand the sensory changes that can occur in dementia. Would it surprise you to know that for some people, the joy of a nice hot shower can change to being the discomfort of beating down water on their skin, it can happen rarely, but it's important that some people may actually change in their experience of that shower experience. Sight, touch, hearing, our sense of balance, smell, and taste can all be impacted, and even more so with the aging process. But often it is memory we focus on Well, our guest and author Agnes Houston has quite a few things to say about that being our only focus, it's not all about memory, as I know she's gonna tell us. Now Agnes will be joining us from Scotland on a Skype line. So you'll have to forgive some of the audio. Agnes is part of a pilot program we support to maintain her advocacy as her dementia progresses. So want to say thank you to Agnes as assistant in advance for all her work to help support Agnes and I, in making today possible. Today is about celebrating not only the 20,000 copies of the print version of this book that have been shared, but this new audiobook version. And so it's fitting to be able to talk to Agnes about the history of the book, and what's important. Welcome, Agnes.

Agnes Houston:

Hi, everybody. Welcome from Scotland.

Colm Cunningham:

Well, Agnes, we've said you're in Scotland. Is that where you were born?

Agnes Houston:

I was born not far from where I am just know, in North Atlantic shore coat bridge. And I came back home.

Colm Cunningham:

And tell me what's the weather like there today?

Agnes Houston:

It's freezing cold and damp, very, very cold, damp. weather.

Colm Cunningham:

Well, Agnes, you and I obviously know each other for a number of years, you have traveled to different parts of the world, including here in Australia to share your knowledge. But early on in life, you were traveling for a different reason. You trained as a nurse and went as far afield as Hong Kong, I believe.

Agnes Houston:

Yes, during West being Queen Alexander, Royal Army nurse. That's where I'd done my training. And I travel to Hong Kong and Singapore and other places like that.

Colm Cunningham:

So Agnes, as a nurse to another nurse, why nursing? And what did you love about it?

Agnes Houston:

Do you know this? This isn't the right answer, but it's my answer. I was in London, and I was wee lassie from Coatbridge, and I was I knew there was more in life than what I was experiencing and seeing. And in London, in one of the big escalators famous escalators they've got, I was going down and this advert caught my attention, join the army, the queue ease and see the world and trainers or nurse. And I kept going up and down that escalator To find out more about it. And that started me on my adventure, love of adventure, and then love of nursing.

Colm Cunningham:

Agnes you're definitely somebody who loves an adventure, and we're going to talk about some of the journeys you have been on. I first met you as part of your journey when you were involved in campaigning for your dad, who had dementia, and he had negative experience of care and hospital. Can you tell me a little bit more about what drew you to come to the dementia Center at Sterling to talk about your dad's experience in hospital?

Agnes Houston:

Well, gosh, well, I know what best practice looks like. As a nurse. I knew that nursing is challenging, and everybody wants a bit of your time. But as a nurse, and an Army nurse, I learned to be able to be good time manager and to be able to deal with my written work excetera and spend time with the patients who needed this. And my dad was having him he had dementia and we did didn't know at the time, but he was at the end of his journey. And he was having another bout of respiratory challenges. And this time we found out it was pneumonia. And then he was in the hospital that I used to work in, and I know how busy they can be. And I also know that I found time to attend and meet the needs of my patients. And that wasn't happening with my dad, and in the no blame game. But I wanted to highlight this. And I used everything that I had learned in my campaigning, and then a mate in Sterling University. And then I the smartest sent, they picked on me telling my dad's story, and they took it from there, and I will be forever grateful for them. That was my dad's legacy. Because he died sadly, a couple of weeks later,

Colm Cunningham:

Agnes, your dad was diagnosed with dementia and you became a clear campaigner. For him, you probably didn't think that the next stage of the journey was going to be your own diagnosis, and the campaigning through the Scottish dementia working group that you and others did. Agnes, what were the first things you started to notice, that led to a diagnosis of dementia?

Agnes Houston:

Well, I was working, and I was working by this team in a code of practice talking about how to keep well and have a good posture, etc. And then and spinal health. And my dad had dementia he used to come to my work and I just to give them wee bits to do you know, I was in managing the the thing giving health talks and do, I was all things bar a chiropractor the people used to say. And while my dad was getting one of these memory tests, and remember, it was in any mental tests, they used to do every couple of months and, and I noticed that I wasn't getting things right. You know, and my dad was saying things to me, you're worse than me. And then in the work, and they had special meetings, I'll say behind my back because I wasn't invited to them. And they brought me on key help, because we thought it was stress of working stress of my dad's dementia. And then it got to this stage where my boss, the chiropractor, Dean's Kolb, and I'll be fit ever grateful to James, because he said, Go and get help Agnes. But everybody thought it was a brain tumor. You know.

Colm Cunningham:

Now Agnes as I said in the introduction, everybody thinks about memory being one of the most significant things that impacts on somebody with dementia early on. We know you started to feel things differently. You started to experience sensory changes. What were some of those first things that you started to go hang about? This isn't just about memory?

Agnes Houston:

Well, I think one of the first step well, person, the girl I trained up to take over my job. And they noticed my writing first, would you believe we couldn't decipher my writing. And I was not well known for beautiful writing. It was the way I was taught at school. And I thought that was very, very strange. And then it was one day getting lost on the way to work, a place I'd walked to for seven years, and suddenly I couldn't find my way. And falling to the side was another em your normal my gait. I was I was swinging to the side and I couldn't. So my sense of balance and where I was my positioning in the world had gone or seem to be impacted. And and then as time went on, I kept saying, I can't see I can't see gone into hair dressers to get my hair and my fringe cut and kept saying it's my fringe I can't see. And that and then it went on to develop that I could no longer tolerate certain tones and pitches and sounds and my startle reflex and so crossing the road was a big challenge. It was awful. And I did get bumped by a car. You know.

Colm Cunningham:

My goodness, Agnes being bumped by a car. Was anybody talking to you about these issues? And the fact that these sensory changes might b related to your experience o dementia

Agnes Houston:

None None whatsoever. The only people who had any sense of What was going on to me with me was other people with dementia. When I started to bring up in the campaigning areas, and that, the professionals never picked it up. And it was people with the diagnosis of different types of dementia the same dementias as me and other dementias. Different age groups and they were coming to me and saying, Agnes, does this happen to you? Do you start seeing things? I started to see things and have visual disturbances, etc. And then I realized I was no longer alone, that other people with dementia had these symptoms. And nobody, absolutely nobody was getting any help that I came across at that particular time. The only people and and a lot of professionals began to think or maybe this is what I had was PCA, posterior cortical atrophy, which is specific to your vision. And Terry Pratchett, famous novelist had that and he highlighted that. And it seems when he was telling his experiences, my daughter phoned me, she was living abroad. And she said to me, Mum, Terry Pratchett, is actually describing some of the things that you talk about, you know, and even to this day, the professionals in the dementia world don't talk about, and they still talk about dementia being memory.

Colm Cunningham:

Well, of course, that didn't stop you from getting to talk about it, because you got a grant to actually talk to other people with dementia, and to capture what they were saying, who helped you do that?

Agnes Houston:

That was Life Changes Trust gave us the grant in which you cut as a charity in Scotland, I think if they gave me a small grant, and my daughter gave 45 years of her working life, she was a nurse to travel with me. And without her, I would never have been able to do all this work, because she took the strain off of everything, and allowed me to do what I do best, which is talk. And then I realized Colm that, yes, people were listening. But listening was no good. I needed action. And I wanted action people. And that's why I loved HammondCare. Because HammondCare came along in your Colm, and I knew you well before that. And you you saw, and you got the board and HammondCare and put my wishes and dreams towards them. And they then help you to take it fun further and get it out. And an action we, you know to make it better get in better, and the action is what we're talking about. Because there's people who are so visually impaired through their dementia and through other things. They weren't getting the word.

Colm Cunningham:

So Agnes, let's talk about some of the things that you find through your work. visual perception problems, spatial awareness, or one way that you describe it as brain blindness. Can you tell me what you're talking about here?

Agnes Houston:

Yes, and you know, it wasn't my coin. But in blindness, I was set in with a person with dementia. And it was ex policeman, big tall guy, sadly, dead now. And we were sitting the morning about some of the things that people didn't understand. And it was this visual perception. And his wife came along and she said yes, Peter calls his brain's blind. And I don't need glasses, the glasses are of no use. And you know, that just made it right for me. And I said to Peter, can I use that? He said, certainly Agnes, as is because that sums that up. It sums up totally my brain. It's the interpretation. It's the wiring. So you see where your eyes right, you get the picture, but it's your brain that interprets that picture and sends it away along so that you see it and that's how we're stumbling. What is it we're clumsy and various things like that. Our brain the message and things that are out of kilter, and then it's just as an awful place to be. And then again, you get the misperceptions. You can have Charles Barney syndrome, you can misperceive what you're seeing, where he would never think that his hallucinations were It's misperception, or it could be full blown hallucinations, you know?

Colm Cunningham:

So have you had times where you felt you're hallucinating? Or misperceiving things?

Agnes Houston:

Oh, yes. And I have them quite a bit had them the other night there. And what I've learned to do is know not to be frightened of it, you know, and live alone. And, and just to talk myself through, this is a misperception. And, and, and I have work arounds, you know, I do you know, Colm I've started to see I'm like Mary Poppins, I have a bag of workarounds, and I pull all these tools out of this bag. It's a bob bottomless pit of tools to help me get by, with a lot of things to do with my dementia. You know, and, and I tell people, and I get, see, there's so many wise people with dementia, please just ask them, take time to listen to them. And then please, take action.

Colm Cunningham:

Agnes, you've told us about the sensory changes related to smell your burnt toast story comes to mind, but you may have another one to share with us.

Agnes Houston:

Yes, first of all, my daughter, I'll tell you the story of my daughter. It's not burning toast. We were out on a challenge, you know, advocacy work in that. And she was supporting me. And I kept getting in a note of these shops and I said, Oh, Donna, get out of here, dirty cleaners in this shop. Can you smell the dirty mop? Someone's got dirty mop they've been cleaning the floors with dirty mops get out of here. And every shop I went into in the loudest possible voice, you know, corner with him. And then she says to me, Mum, that's your dementia. If this step smell starts following you from shop to shop, it's you. Not every shop is using a dirty mop, you know, and you get that and people with dementia talk about it, they're smelling. They are they don't smell you know, and it can be bodily overt odors. And one fire man was telling us that this lady with dementia, she'd done a work around or ignored the smell of burning. And then one time her house was on fire. And she got in a smoke filled ingestion because and when the fire brigade got and then she says no, no, no, no. It's my dementia's imagination.

Colm Cunningham:

Oh my goodness.

Agnes Houston:

So it's serious, we need to be listened to, and it needs to be made serious. My solution for that and the fire brigade with me as my fire alarm is primed straight to the end, they do a rapid response and find an active solution to resolve our problem to the best you can.

Colm Cunningham:

There are plenty of tips in the book is the one in particular you'd like to share with the listeners today.

Agnes Houston:

Oh gosh, a challenge there. I don't know. I think one of the things that come in my honor, there's too many. I had a choice that one and then another five popped into my head. I think one of them hyperacusis may be the hypersensitivity to the noise. Yeah. And it takes you unawares, you know, and and that has a big impact because you'll find people not wearing their hearing aids because of it and people become very aggressive in their manners because of this annoying, awful pitching noise. And

Colm Cunningham:

so actually a trip to the cafe could be an unpleasant experience. While intended to be a wonderful one

Agnes Houston:

Awful awful and you know the scraping of I remember being in a strip was either Australia or Canada I can't remember but it was a shopping area. You know where they have the big malls and you could have a cup of tea or a wee snack or something like that. And that these metal things you said chairs that you sat on and the pulling you know they pull the tables this way the pull the seat that way and everybody who got up and down done the same. And at the end up as stood up and I shouted you could just be quiet is a not a way you could do that. And there's such a cheap solution. So cheap is unbelievable and assist you don't go on Amazon and get 100 or 1000 D The plastic a rubber the things that you put on and anywhere I go if they do that, I'm going to say excuse me? And I might, could you allow me to put these on the top bottom of your chair so I can have a cup of coffee, please?

Colm Cunningham:

Absolutely. A problem solved so easily and a good day out as opposed to one where your ears are hurting. And you're wound up?

Agnes Houston:

If you see me getting agitated, I know you Colm. You would look around the environment, you would see, is it the lighting? Is it the noise? What is it that is causing the distress? And we would either go forward and say the music is too loud can and we've done that? Can you turn it down? Please? You know, look, there's not many here, you know, maybe no music would be good. Over here for a wee chat?

Colm Cunningham:

Now, Agnes we did want to make sure that this important book was produced in an accessible way. So everybody could learn and reproduced it in print form. And then in a free download. But in fact, in conversation as a military nurse, you weren't done, you came back to us and challenged us that your friends who had worked in the military, we're asking for the audio form. And that's one of the things that we're celebrating today on this podcast. Why was that so important to create an audio version of the book?

Agnes Houston:

Well, because of me being an Army nurse, and living in Scotland, and we have this Scottish war blind, and it's for veterans who have vision impairment. It doesn't need to be done during a war time. But you just needed to serve in the forces and they would assist you. And they give you rehabilitation and help here. And I was very fortunate, about two years ago to get introduced to them. And while I was there army camaraderie, forces camaraderie so you don't pull their punches, you know, and they were so proud when they seen the book, and it was brought into the center, and they were asking, but a few of them were coming up and saying, you know, Agnes, I would like to hear this book and be able to go back to different chapters. But I don't always have someone who will read that out to me, and I can't read it, because of their, you know, eyes. And they challenged me and said Agnes, come on, pull your socks up, get this an audio form for me. And I went and thought I'm on a mission.

Colm Cunningham:

So we're celebrating today that you can get the free download version or the audio book to listen to all of those chapters, we just have to charge when we need to print it for you. But that wouldn't have happened without your determination. I have always said your humor. Being tenacious and challenging people has actually made such a difference. Because I know for example, this book has had 20,000 copies shared across the world. And many people I know on social media have thanked you for the richness that you've brought to their understanding and challenged their perception of dementia. So on behalf of us all, thank you, Agnes, and thank you for joining the dementia podcast. Any final words Agnes?

Agnes Houston:

No, I just wanted to say keep on pushing and getting help for us, the Silent Voice of dementia. And we cannot we can't do this on our own it's teamwork. So collaborate and just get together and you will have a bigger, more richer slice of the cake than when you do it on your own.

Colm Cunningham:

Thank you so much, Agnes. This episode of The dementia podcast is sponsored by HammondCare publications. And if you visit dementiacentre.com you'll be able to download Agnes' book or the audio version to listen and learn. Bye for now.