Dementia and Difference

Colm Cunningham: 0:06

This is the Dementia Podcast, I'm Colm.

Excerpt: 0:12

For the elderly home can be a lonely place. I have no family here. I'm basically on my own. Now a life changing social experiment returns. Hi! Hello. They're old people.

Ailsa Wild: 0:25

That's season two of the show Old People's Home for Four Year Olds, the Australian show, building off the one that found life in the UK.

Susan Kurrle: 0:34

We didn't give them antidepressants. We gave them interaction with children.

Ailsa Wild: 0:38

That was the driving force behind the show, Professor Susan Kurrle. There is a basic assumption in old people's home for four year olds. And in Sue's work more generally, that people with dementia still have a life to live. There's still joy and connection to me made. Someone I think would agree with her as Donna who lives with dementia and who I spoke with back at the International Dementia Conference

Donna Lee: 1:02

To speak about that people who live with dementia that we have abilities and it's like when you when you get diagnosed. It's like a death sentence right? So it changed your whole persona of look out of life. But I just thought no, I think that can't be right. It can't be that's the end.

Colm Cunningham: 1:31

When Ailsa talked to Donna, we heard how both understanding the diagnosis and processing it can be difficult. A lot of that comes down to the language we use. That D word is a wide umbrella term. And sometimes even starting that conversation can be couched in confusion.

Ailsa Wild: 1:49

Sue is a practising Geriatrician Curran Professor in Health Care of older people at the Faculty of Medicine and Health at the University of Sydney. Colm interviewed her for this podcast, working long distance and probably awake at some ridiculous hour.

Susan Kurrle: 2:09

I think the term umbrella is a really good term for dementia, because that's the catch all name for a whole whole stack of conditions that cause problems with memory with thinking, changes in personality and behaviour and all impacting on day to day function. And I am very careful, I explain to people dementia is the umbrella term. But there are specific causes for it. Just as with cancer, cancer is the umbrella core term. But the causes could be lung cancer or bowel cancer or prostate cancer. So I describe it like that. And I then point out that their sort of dementia is probably Alzheimer's disease, or vascular or stroke related dementia, or perhaps dementia with Lewy bodies. So I try and use dementia more generically, but then become quite specific about the cause. And try and explain to people that they're all very different diseases. And they they progress in different ways. And we manage them differently.

Colm Cunningham: 3:21

And could you perhaps give us a sense with Alzheimer's and vascular dementia? What might we see that is different if you were explaining to me that I had one of them.

Susan Kurrle: 3:31

So certainly with without Alzheimer's disease, which in Australia is the most common form of dementia, and unfortunately, is the one for which we don't have a cause or a cure. But with Alzheimer's disease, you usually see gradual onset of symptoms, and people will come to you with memory problems. But when you look back, you see they've had a bit of depression or anxiety, and they weren't doing things as well for quite a while. And it's that gradual progression with with the changes in their memory that makes you think it's more likely to be Alzheimer's disease. And it's more likely to involve memory, in particular, with say vascular dementia, or what we used to call stroke related dementia. It's quite different, it's often much more sudden in onset, and it may just affect one particular area of a person's memory or thinking. It can affect speech or calculation, or insight, or perhaps even decision making. So it's a little more specific and it comes on often a little more quickly and in a stepwise fashion. And then you might compare that to dementia with Lewy bodies, which is different again, and often people have relative preservation of their memory. So they do well on memory tests, but they have hallucinations. And they have disturbed sleep, and they get other symptoms perhaps related to a Parkinson's disease like state. So it is very different to say Alzheimer's disease and vascular dementia.

Colm Cunningham: 5:19

During else's conversation with Jim and Clare, Ailsa wanted to know how much information they had sought out after diagnosis.

Jim: 5:27

We went into this early onset dementia, Alzheimer's, knowing nothing other than what we were told at the trial and knowing only from a little bit of reading, and I try not to read particularly on the internet, because it's a bit scary.

Ailsa Wild: 5:46

Yeah, yeah.

Jim: 5:47

So I stay away from that I

Ailsa Wild: 5:50

Sorry, when I got pregnant, my midwife was like, Do not Google anything. Do not do it, you're gonna freak yourself out. Sorry, I interrupted you there.

Jim: 6:02

That's OK. I know exactly what your saying. Yeah. And so as a result, I try not to listen to podcasts or TV shows or things like that about the subject, because it all is it ends in disaster. So we we've gone into this, knowing nothing and just taking each step as we go. Each step as a stride if you like, some people do it differently. Other people do it the same way. I don't know what the best way to approach it is.

Colm Cunningham: 6:38

I'm with Jim when he says Dr. Google can be scary. And we see from Jim, that progression can be difficult to understand and manage. And there really isn't a one size fits all, either. Sue when I was working as a practitioner here in Edinburgh, where I'm recording, we had a guide that came from the local health authority. And people used to say, if you were handing somebody that guide early on, tell them not to read past page 50. Now what they were really saying was, don't scare them about some of the things that will become more complicated. We talk about complex dementia, when things are in that sort of phase, rather than overwhelming people with some things that might or might not happen.

Susan Kurrle: 7:21

I think that's exactly the the issue when you give people too much information, and they read through it. And they they ring you up or they're emailing you and they say is this really going to happen to mum? And I say everyone's different, this guide is written by this particular person about his wife. But some of this may happen, but a lot may not. And I think reassuring them that whatever does happen, we'll be there to give you a hand for it. we've usually got ways we can manage whether it's the behaviour, or to provide assistance, those sorts of things are really important, I think. And it was brought home to me in a clinic I did this morning in Northern Sydney, with a with a couple that I have been looking after for nine years. And the wife is about to go into care. And the husband said, Will you still be there for us? Even though she's going to be in care? I said, Absolutely. He said, It's so important we've got you and a couple of other staff, who they're familiar with they're comfortable with. And we might only just be on the telephone. It's no big deal for us. But it's a really big deal for this man. And I think providing that reassurance that no matter what happens, we will try and help in any way we can, is really important. Where care is in bits and people go from one area to another with no continuity. I think that must be really, really hard.

Colm Cunningham: 8:54

When chatting with Sue, I posit that since people are so individual, the condition will affect them differently.

Susan Kurrle: 9:01

It's yeah, it has to be really, really individual. And it's where the person's are at at that time. So you can see one person who and I'm thinking of a couple where the husband has always been incredibly bossy. His wife has developed dementia, he just takes over. And she's used to that. And he puts services in place and he says you will do this and you'll do that you'll go for a walk every day. And it's surprising she actually does quite well, because that's what works for her. It may not work for someone else. And then you've got to go in and very gently say to the husband, or it might be other family members. Look, maybe this isn't the right thing for your mum. Why don't you get her to come to one of our groups. And we'll look at you know, other ways of doing this. Certainly getting adequate assessment that looks not just their cognitive problems, but their functional problems. Are they likely to be a real falls risk? Remembering people with dementia fall twice as often as people without at all ages. So it's very much saying, Okay, if you're going to do your walking, this may be do at round an oval or in certain, safer environments. Yes, thinking about the provision of, of food and adequate assistance with that of housekeeping.

Donna Lee: 10:24

I lost my cooking skills. So I'm so just trying to time things. I burnt I cook, I moved in with my son now. And I said, I'm gonna cook you dinner tonight. My doctors told me to stop trying to get the gas can disconnect. It, I don't like microwave, I like gas cooking. So I argued with my doctor. And I said, I can do that as long as I get signs put up. So I had signs to turn off things. Signs to turn the oven off and everything. So I burnt the potatoes, but I, but I just manage it.

Susan Kurrle: 11:01

And thinking very much to the future, which is a whole new, you know, another area of planning ahead, in terms of legal financial, sometimes work, driving, maybe moving to a better house, a better environment, all those sorts of things are very individual, depending where the person is at at that time.

Ailsa Wild: 11:25

when Colm was talking with Sue, Sue mentioned follow ups, after the initial diagnosis, that might be able to provide support or clarity, more for the family, and the people around the person living with dementia.

Susan Kurrle: 11:41

We are developing where I work in Northern Sydney, what we call a Care Navigator role. So once we make the diagnosis of dementia, the same nurse that might have done some of the memory tests with the person will ring them afterwards and say, you know, introduce themselves, remind them that they had met and say now, have you got any questions about what Dr. Kurrle told you? And would you like to come in and talk about it? And then she will have information available, sometimes will actually organise a follow up appointment with me within a month or two. If she's really worried they haven't got the message, or particularly the family haven't got the message. And there is pushback from family. I've had quite nasty letters. How dare you say my mother has dementia? When it's plain as the nose on your face that that's what the problem is. So getting the family to accept the diagnosis can sometimes be almost as difficult or even more difficult than it is for the person with dementia.

Colm Cunningham: 12:49

And what do you think that is about for those families? Is it the stigma, is it? Yeah, what do you think it is?

Susan Kurrle: 12:56

Look, I think stigma is huge. And I say that when when I talk to people who I think really do have vascular dementia and I say look it's stroke. We used to call it stroke related dementia, and the relief are so it's not Alzheimer's disease. And I say well, it's still a form of dementia. But they say as long as it's not Alzheimer's. The stigma attached to that name is really quite significant. And I think that that is that is a real issue with families. I think it's more with families than with the person themselves. There's also that fear that family have. Oh no, we are now on that pathway. And one thing we always say to families is, Look, we're here to walk this with you. And most of us who work in this area, particularly here at Hornsby where I work in Northern Sydney have had family members with dementia. So we can we can be with them both professionally and personally. And I think that can help. That being said, every person with dementia is different. And so just because something worked for our family members, it doesn't mean it will work for others. And we have to point out that often it's a little bit of trial and error in these sorts of areas.

Ailsa Wild: 14:16

I got the sense that while the situation was tough on both of them, Jim was determined to still keep Clare's quality of life high. But it was clear that some things had changed. Things that they couldn't control.

Jim: 14:38

And my family for example, were no support other than my sister sorry. My sister was great support but my two brothers

Clare: 14:49

Don't see them

Jim: 14:49

Climbed back into a shell. Yeah. And have recently made some approach to be seen to be supportive, but that's almost too late. But at the same time, they they're genuine in what they say. And that's wonderful. But you have to be careful of what you expect and who you expect it from. Some friends fall away because they can't cope with the diagnosis. Some friends come closer.

Clare: 15:23

Yes, absolutely. Well in and so do comedies with his hair. No, it is. No no, no, no. My God help us. Very, she's quite old.

Jim: 15:41

Janice

Clare: 15:42

Janice. Janice is,

Ailsa Wild: 15:44

Has Janice come a bit closer as well?

Clare: 15:46

Yes

Ailsa Wild: 15:47

Have you felt supported by Janice?

Clare: 15:48

Oh ye, No

Ailsa Wild: 15:50

No, not supported. Did Janice is Janice anyway?

Clare: 15:53

Yes.

Ailsa Wild: 15:54

Okay.

Clare: 15:54

Yes.

Jim: 15:55

And that's because she can't get on to Claire. And she and she can't cope with being as much doesn't know. But she's she found it hurtful. She was hurt. As much as what you were almost.

Clare: 16:12

Yes.

Ailsa Wild: 16:13

It was heartbreaking for her.

Jim: 16:15

Yeah it was heartbreaking for her. Yeah. And so friends fall away. And friends, some friends come closer family fall away, and some family come closer. Yeah. You can't expect anything of any of them. It just happens. And it just got accepted in the normal course. And and it has been hard. Yeah, I'm when I mean hard. When I say hard. I mean, that it has been hurtful at times. And then I also mean, it's been natural. It's a natural thing. It's not as if they sit down and say, Oh, Clare's got Alzheimer's now, so we're not going to talk to her anymore. They don't do that. It just is a natural falling away.

Ailsa Wild: 17:02

I wanted to talk to Colm about this. Because it just felt heartbreaking to me, but also understandable. When I was talking with Jim and Clare, one of the things they talked about was how their relationships changed after Clare's diagnosis. And I guess I kind of remember that too, with my own Nana, how people gathered round differently. And they then there was suddenly a Nana group email that happened. And I guess I wondered, Is that something you've seen with people once they have a dementia diagnosis? Have you kind of seen the relationships around them change?

Colm Cunningham: 17:43

Absolutely. And look, we see it in any diagnosis, you know, whether it be a cancer diagnosis, people become uncomfortable in some ways, and some other people become really comfortable because they are more able to have conversations. I think that people when it comes to dementia struggle, because we know that the verbal communication is being impacted so much. So being comfortable with silence with the nonverbals can be challenging for some people who in themselves may not be so their response is to withdraw. And of course, that's the last thing the family want, because they actually need support, they need outlets. And that's why it's so important that there are groups that carers can connect, talk about how they're feeling because they may well, particularly as the dementia progresses, have ever decreasing circles of their original family resources.

Ailsa Wild: 18:41

Hmm, yeah, I'm just thinking about someone who has dementia, becoming less comfortable with talking on the phone and then what happens then how how, how can the people who are close to that person gather around them in a different way if that's what they used to doing?

Colm Cunningham: 19:03

And the most important thing is to, in some ways go with the flow rather than to pull the person up because their next thing is to switch into I'm doing something wrong, or I'm not presenting myself, well. And we all know that experience where you actually half your brain has now functioning on how you're backtracking and catch up. So I think one of the important things is to to go with it, that to listen and listen longer, because, as you and I've talked about, it may well be through the series of words and phrases that the person's using, we get where they're trying to be, what they're trying to say or how they're trying to feel.

Ailsa Wild: 19:46

Yes, because they may not be using the specific language that in some in some way exact but actually they are conveying what they're trying to say and in other other ways

Clare: 20:00

Well, I actually think in extra netball, I think we I think we had too much. Did you? Yeah, I do. Because because you've had, you've had recording of a pool of people and this silly things like that too. But you know when you have Slynt? Well, when you have I've had three, three parts when we go back to what's his name? No. What's his name? Your that. Japan, Japan been to Japan? Three times. Yeah. And I don't want to go any further. And Jim says, I'll come back again. I'll come back again. Is that right?

Ailsa Wild: 20:47

You want to go back to Japan. Jim wants to go back to Japan.

Clare: 20:50

Back with his with his buggy boys. I don't know who they are like, they can go off with it with her trip off if he wants to.

Colm Cunningham: 21:06

Thanks for listening. The Dementia Podcast is produced by Joel Martin. Editing by Sally Grosvenor. Mixing and technical support for the podcast is done by Neil Blanco. Fact checking and research by Gina Pirello. Dr. Narelle Yeo manages and music team with composition supervised by Erin McKellar, who's the composer of the dementia podcast theme. The composer for this episode's music is Charlotte Lehman. Our website is dementiapodcast.com. The Dementia Podcast is a production by HammondCare's Dementia Centre