Episode 22: A lived experience of dementia and changed behaviours

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Welcome to the NPS MedicineWise podcast, helping health professionals stay up to date with the latest news and evidence about medicines and medical tests.

A message for our listeners. This podcast episode contains some sensitive material and mentions sexual assault. If this content raises any concerns for you we have included some phone numbers at the end of the episode.

Dr Anna Samecki:

Hello, and welcome to the NPS MedicineWise podcast. I'm Anna, a Sydney-based GP and medical advisor at NPS MedicineWise. You might recall I recently hosted a podcast where I interviewed Kara Joyce, our clinical lead on the dementia and change behaviours program. And we spoke of some of the challenges faced by health professionals in the aged care space. Today, we're going to explore this topic a bit further, but through the patient's perspective, and I'm so pleased to welcome Theresa Flavin. Hi Theresa.

Theresa Flavin:

Hi Anna, how are you?

Dr Anna Samecki:

I'm good, thanks Theresa. Thanks so much for joining us today. Perhaps to kick us off, I thought it might be a good idea to tell our listeners a little bit more about yourself.

Theresa Flavin:

Sure. My name's Theresa. I think I'm around 55 years old. Sorry. I get a bit confused with numbers. I've had dementia for, I think maybe around seven years or so. So I'm very fortunate that I got diagnosed very young, fortunate or unfortunate, but it gave me an opportunity to have a few years of a heads-up, I guess, for myself and the family to make some preparations and, I guess, come to terms with what's going on. I have a 16-year-old daughter and a whole lot of grandchildren, a whole lot of animals.

Dr Anna Samecki:

Oh, lovely. Look, thanks for that. Would you mind telling us a little bit more about how your dementia was diagnosed and by who?

Theresa Flavin:

It was a convoluted story actually, because I had noticed something not right at work primarily for a few years. It was getting harder and harder to keep track of just very, very small things like email lists. So I mentioned to the GP and they thought it was possibly an early menopause. I wasn't very satisfied with that because the test came back that it wasn't. Then we moved on to maybe it was depression. So I visited a lot of psychiatrists and psychologists and didn't have any depression. And so it kind of went from there and ultimately I was finding it really hard to be taken seriously. I think because I was a middle-aged woman, it's quite abnormal to really think dementia when someone presents to you with memory difficulties.

So eventually I found a GP who knew me through my professional career, the work GP, and she knew me through a different lens. She knew me as a confident, competent, professional woman coming to her with memory troubles and she was immediately concerned. So she referred me to a neuropsychiatrist. The neuropsychiatrist did the tests, was able to compare those tests to the tests that I did. There are sort of neuropsych tests that you do for employment purposes. And she was able to track the decline, take that data to a neurologist, and it was very clear that it was a dementia clinical diagnosis. And that was then backed up by the imaging.

Dr Anna Samecki:

It sounds like you had quite a difficult and challenging time for a number of years.

Theresa Flavin:

It was. I think that the hardest part was not being taken seriously and really feeling myself as if there was something the matter with me that no one else could see or really believe. It was a very depressing time. I wasn't depressed. I was feeling very low, I would say.

Dr Anna Samecki:

Well, I'm glad to hear that you had such a strong therapeutic relationship with that GP and that made all the difference. So Theresa, you've mentioned you've been diagnosed with dementia and as you know, many patients living with dementia will experience what we call changed behaviour, which can include things such as anger, anxiety, frustration, sleep trouble, and so forth at some stage during their illness. Can you tell us if that's happened to you at all? And if so, what's that been like? What have you experienced?

Theresa Flavin:

Sure. Well, I was thinking about this this morning, actually. And of course, you do get changed behaviours. And from the outside, the medical people will say, "Yes, it's the disease that's damaging your brain," and so forth. And that's absolutely true. From the inside, how it actually feels is that you've lost everything that makes you you. You've lost your career. You've lost your position in the family. You've lost your autonomy. You can't drive anywhere. You don't have any money. You don't have anything really, except for your ability to still live and breathe. So it's essentially like being put in prison for a crime that you didn't commit.

Now, if any of you were put in those situations, you would probably have a lot of feelings, rage, grief, despair, anger, self-disgust, all of those things. And you'd love to think that you would be able to express those genuine feelings. But when someone with dementia expresses feelings that are actually genuine, that have a basis, they're real, suddenly they're labeled as acting out or behaviours. And they're medicated away.

What I actually think is that from the outside, people have a lot of compassion for dementia. They think, gosh, it's probably the worst thing to have in the world and they have a lot of empathy and kindness. However, when a person with dementia actually displays this, it makes people very uncomfortable because it suddenly becomes very real. And I think to be perfectly honest, displays of emotion in our society are really uncomfortable. And that's, to me, the root cause of a lot of why we medicate these things away.

Now, when I say that, I'm not saying that for a second there aren't sometimes people who genuinely do have a very specific disorder which makes them act particularly violently or dangerously. That's quite a different matter. What I'm talking about here today are the very normal human expressions of fear, loss, loneliness, grief, despair, and having dementia is really scary. Every day, you don't quite know where you are. You don't know who's with you. You don't know if you're at home. You don't know if you're safe. And if everyone was logical and we were all in a perfect world, I would say to you, "Today, I don't feel safe. Will you give me a hug or a high-five or a elbow bump."

When your brain is broken, your brain will try really hard to express what it needs to express. But if the path from, I feel fear, to the words, I feel fear, is broken, you might just get, I hate you, might come out as the brain is trying really hard to express something. And I think it's like a train where the train tracks are a bit broken. The bridge between the feeling and the expression is gone. So I wouldn't call what we're discussing today as changed behaviours. I would probably prefer to call it changed expression. The expression you get on the outside doesn't always reflect what you feel on the inside, but very likely it expresses pain.

Dr Anna Samecki:

Thank you so much for sharing that, Theresa. That's very eye-opening. I mean it, what I'm taking away is that it's really just your way of trying to communicate and the onus is on others to also take time to try and understand what you're trying to say. So what have you found most helpful in those situations?

Theresa Flavin:

Most helpful is honestly, there's very little I can do because the feeling's there and the expression is there. The helpful thing is if other people will allow me to express myself. It's almost like you have to be given permission again to be a normal human being or even act like one, because most of us have a free pass. We can behave how we want within social constraints. However, with dementia, there's this sort of hope, I think, that people will be stoic and just sit quietly and when you don't, they want to close you down, because it's noisy and it's unsociable. The behaviours I would probably label us unsociable.

People can help by giving you some space, by just allowing you to have some feelings and allowing you to express your feelings. And at the very most basic level, all the person with dementia wants to know is that they're safe. They probably just can't ask it. Don't know how or can't anymore, but that's really what you need. Try really hard to allow us to make noise if we need to. Allow us to walk if we need to. Sometimes, and I'll give an example, people talk about wandering and it's a label that I don't like, because when I feel pain, I don't recognise it anymore. It doesn't prompt me to do the same action as it would do to maybe you or someone else.

So when I fell off my horse, I had a lot of back pain, but I didn't quite recognise that it was pain, but I found myself walking a lot. And when my family actually took the time to ask me what was going on, we discovered that I was trying to walk away from the pain because the pain was in my back, so my brain was propelling me forward. And it makes perfect sense when someone explains it to you, but unless someone is able to still explain and someone's open to listening, there's actually some clues there in what you would call the behaviours. So take some time to actually look through a different lens of what the person might be trying to communicate. It's like having a different language that isn't written anywhere. Be kind and just help us to feel safe.

Dr Anna Samecki:

And Theresa, what's your take on medicines being used to, I guess, mask some of these expressions?

Theresa Flavin:

Well, I have a take on that. With the proviso that there are certain instances for safety and security, medicines may be appropriate, but putting out to the side for the general terms, I will, for the purposes of today, I'll tell you what it feels like to be given the medicine. I was in hospital, I'd fallen off the horse again. And what happened was I was in a lot of pain and one of the nurses came up behind the bed and moved the bed up to a seated position, but without telling me in advance. So I was yelling out, because it was just physically painful and a bit of a shock. And you'll understand this. With dementia, you don't have the same filter. So maybe beforehand I would've gone, "Ouch." I was like, "Ah."

So when that happened, the nurse got a bit defensive, which was okay. I didn't really care. I just wanted her to stop moving the bed. But she went to the students who were at the end of the bed and explained that this was a typical presentation of BPSD, and that aggression was quite normal and to be expected. And I was with my 16-year-old daughter who was feeling, after that, a lot more aggressive than I was, that's for sure. Because it's a bit patronising, to say the least, to be labeled for. As I explained before, genuine expressions of pain or feelings shouldn't be labeled as anything other than what they are, as an expression.

But as a result of that, I was given some medicine and didn't know what it was. It was just medicine. I assumed it was for pain. Now, when you have dementia, dementia a lot of the time is... I don't know if you've ever had one of those terrible dreams where you are dreaming and you wake up and you don't know where you are and you think, gosh, have I had a whole lot to drink? How did I get here? What's happened? That's what dementia feels like.

Now imagine being drunk and someone gives you the keys of the car and says, "You have to go down to the shops and you've got to put all your kids in the car and drive there." And you're saying, "Ooh, I don't feel good about this." And then someone says, "Well, here have some more drinks. You'll be fine." That's what it's like to have someone medicate you. It's like having dementia squared. Every symptom of dementia is magnified. So all of the fear and the inability to tell you where you are in time and space, it just disappears. Any little tenuous string that you have to reality is severed and you're just set adrift by someone. I can't honestly think, to the depths of my heart, anything that is more cruel to someone with dementia than to give them a dementia pill. It's appalling to me, just for their convenience. So it's strong words, but that's how it feels to take this medicine. You just feel like you're giving a drunk person absinthe. It's dreadful. Please don't.

Dr Anna Samecki:

I think you've summed that up perfectly, Theresa. So what would be your advice for health professionals in caring for a person with dementia?

Theresa Flavin:

My advice is, it's really difficult. I've cared for my mother-in-law. So I'm not just sitting looking at this from one side of a coin. I've been on both sides now, and it's really challenging sometimes. And some of the repetitive things that go on and that type of thing, and sometimes behaviours that you would think are aggressive and name calling and shouting out and all that sort of thing, it's really difficult on a personal level to deal with. I appreciate that. I deeply do.

However, what I would say that none of this is personal. It's really not. Like I explained before, what comes out of your mind or out of your body by way of smacking away or that sort of thing, it's an expression of the insecurity and the self-loathing that you're feeling inside of your soul. Every day you wake up, you don't know if your belongings are still yours. You don't know if your home is still yours. Is this person coming to steal your belongings? You've got this fear. Nothing's right. So you could be smacking someone away because you genuinely think they're coming to steal my shoes. That's how it feels in your brain. It sounds ridiculous, but when you live it, that's how it feels.

So especially for an older person that perhaps grew up and lived a lot of their lives with lack in their lives, that maybe people of our generation wouldn't have experience to much extent, their possessions and their personal space are super important to them. And particularly if you've had institutionalisation. I was raised in an orphanage. If you've had abuse or child sexual abuse. I've had both. So when someone touches my body without an introduction, I freak out and flap around and there's all kinds of things going on, and I can still speak to you very rationally.

Now in a year's time, I may not be able to, but I can guarantee you I'll still be flapping around at a strange person who comes to try and put me in the shower. So what I would say is give us a reason to feel safe. Number one, every single time you approach the person with dementia, give them common courtesy because they probably don't remember who you are. And if they do, it's still kind to be courteous. Introduce themselves. Give them a reason to feel safe around you and their things. And you'll possibly find that we can build some kind of a trust, this doesn't have to be verbal, can be eye contact, it can be very gentle touch. There's a whole lot of ways, every person's individual.

We wouldn't care for our newborns, or our children, or our children with a disability, or adults with a disability, any other disability in the way that we think of people with dementia. So I would say for care professionals, if you had someone who you knew had a good intellect, who had a purposeful life, who suddenly had an acquired disability, you would still treat them with a lot of respect. Please continue.

Dr Anna Samecki:

Theresa, you've been so incredibly insightful. I just want to thank you so much for sharing your story. We're coming up to the end of our podcast and I just wanted to say, I know our listeners really appreciate your time. I certainly do. We don't often have this opportunity to really get a sense for what it feels like to be the person, I guess, behind that label or behind that illness. So thank you so much.

And look, if anyone listening has any questions about or suggestions for our future podcasts, or if you have any other questions, please do get in touch with us. You can reach out via our website or via Twitter or LinkedIn. You may already be aware, but we also have a dementia and change behaviours program currently being run through NPS MedicineWise. So if you're interested in finding out more information about how you can improve your practice or how you can help patients like Theresa, please jump on our website as well and have a look. Thanks again.

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If this podcast episode has raised any concerns for you or a loved one, please contact Lifeline on 13 11 14 or contact 1800RESPECT, the national sexual assault, domestic and family violence counselling service, on 1800 737 732.

For more information about the safe and wise use of medicines, visit the NPS MedicineWise website at nps.org.au.