After the Diagnosis: Caring for a Parent with Dementia | Dr Stephanie Ward | Club Sandwich | Dr Stephanie Ward | Club Sandwich

I've had people of the age of like, nearly 100 telling me they're waiting for their mum or their dad, or as their mum or their dad.

1, 2, 3.

Hello, Sarah. How are you?

Thank you.

It can be exhausting. It's really tough for caregivers of people with dementia as it progresses. And sometimes I think that often it becomes more tough for the caregiver than it does for the person themselves who is experiencing the dementia, if they're sort

And that's really. Yeah. And that's often more. More often the case that as the dementia progresses, a person who is living with the dementia isn't aware of what's happening. But of course, the caregiver is and is also trying to care and is also trying to accommodate and often has their own health and, well, being really negatively impacted as well.

Strange ideas is really common or false beliefs. And. Yeah, I haven't heard about a dog winning the Melbourne cup before. That's quite a nice one, actually.

But often they're not nice ideas.

And they're little stories that people really believe about why things are happening. And sometimes they can become a little bit paranoid as well, these ideas. So when things go missing, and they do go missing in the house, because the person's forgetting where they're putting things down, it's quite common to blame another person.

Yeah, stealing. Or someone's come in and move things when I'm not being here. And while I won't go into what we really understand about what the brain's doing, it's. The brain is playing a trick on that person, and it's really difficult to manage. And I think when we're dealing with these strange ideas, we have to think first of all about what our goal is, because I think our goal is usually going to be around reducing distress in the person that we're caring for. So Haymie winning the Melbourne Cup.

Probably just leave it.

Probably not worthy of addressing, correcting.

It can be really hard to engage in a logical argument with somebody with cognitive impairment when it's progressed. No, they couldn't have done that. And sometimes it's good just to be reassuring.

Bit of both. So looking for things. Everything is okay, I found it. We'll get it again, that's a bit strange. It doesn't quite make sense. But anyway. And just trying to Move around that issue without getting into it. Oh, don't tell me that neighbour's come over again and moved your place mat. You know, not trying to get into the delusion as well.

Though that is true. And we do know that people living alone and who have cognitive impairment, they are vulnerable, right? They are vulnerable. And sometimes people do get taken advantage of. And often when we are living with cognitive impairments and we're alone, we are starting to get frightened about things as well. We're just trying to make sense of our world and keep ourselves safe. So that can be time to look at getting additional supports and reassurance and safety measures for someone. And I know you talk about this in another episode, that when people are very unhappy and frightened alone at home, they can be the times where you think about a move of that person either into a residential aged care facility or some other supported accommodation or with other family members, for example.

Yeah, that's a. It's a good point. Because when you are living with dementia, then any new environment is a huge cognitive load. It's a disorienting, it can be stressful and it takes a bit of time to settle in.

A lot of people find that takes a few days to adjust to a new environment. I would expect that. We also see it when older people with dementia go into hospital, but they're different. But you wake up. I don't know if you experience it. You're in a hotel, you wake up and where am I? But if you have dementia, that can be very overwhelming. It can even cause people to become delirious in the short term. Staff in aged care facilities usually are familiar with this and are aware of how to assist people in settling in. And I think it's important to bear in mind that a good proportion, at least half of people living in aged care facilities are living with dementia. So they're in good company.

It is scary. And you start to. Some people start to get worried about all sorts of different things, money, their safety at home, fixated on something that might need to happen and keep going back to that again and again and again, and it's annoying if you're having to deal with that sometimes. I always think it's important to sometimes take some time out for yourself, first of all, but to have a think about whether there's something else underlying all of that, whether it is fear, whether it's loneliness, whether it's boredom, whether it's something physical like hunger or pain or just being tired. Is there something in those behaviours? Is there a need there that's needing to be addressed? And it's coming out as being fixated on something.

Well, that's a really good question. I'm not a psychotherapist, so I'm probably not in the best position to answer that.

But you do make a point that people. People's early life experiences, and particularly early life traumas or traumas that they've experienced during their life can manifest in different ways, particularly when dementia sets in. And there can be, you know, triggers for people, particularly, you know, for example, you've been through a war or you've experienced abuse or domestic violence. And so what's always important when you're either providing that care as a family member or if somebody is in an aged care facility, is to really have a good understanding of. Of that person and to understand what things might be a trigger and what things might be reassuring. But we're all very unique individuals, aren't we? And there's no one rule that fits everybody. But it's a really important point that our whole history, it's part of who we are when we're 70, 80 or 90, and then we're living with cognitive impairment as well.

I think it can be dependent again on what we're trying to achieve for that person. And I've had people of the age of like nearly 100 telling me they're waiting for their mum or their dad or as their mum or their dad,

Yeah, yeah.

Well, I'll put it to you like this. If I were to tell that person their mum had died, it's gonna make them feel really bad and they're also gonna forget and they're gonna ask again in two or three or four or five minutes in this particular, you know, at that particular stage. So I often use what a bit of. One of my colleague calls therapeutic fibbing is just to distract and just to say they' or they'll be here later or just to. I'm not sure, but I think everything's fine.

And to.

and divert, but also to realize that when someone's calling or asking and they're worried that there's fear and there's anxiety and there's worry in that moment and what that person needs is comfort and reassurance. And sometimes we can also provide that not just by what we are saying but, but by how we say things as well. A lot of our communication is non verbal. It's our tone of voice, it's our pace, it's our eye contact and being

Being present with that person and just providing that level of comfort you're with that person at that time. I find that very helpful in my, in my work and I think that that can help because we're often responding to emotions and fears and it's manifesting in, you know, stories that come out. Sometimes I see people who, you know, during their lifetime were looking after five kids and holding down a full Time job and they were vigilant and on top of everything and now they've got dementia, but they've got that drive. I've got to look after things. I'm worried I'm gonna be late for school. Are they back from school yet? I've gotta get to work. And you can see that. Get up and go and you've got to be. Yep, I know it's really busy. You're really busy. Everything's happening, but it's going to be fine.

It's all. All under control. It's all under control.

I've heard of people that want to get up and, and go to work and just sometimes an idea of, well, the meeting's been cancelled. Ah, have a cup of tea and sitting. Yeah, just responding to what that person needs in the moment. And do we feel bad about lying? You know, you haven't worked for 40 years, you have dementia and you're in an aged care facility. What are you thinking about?

And Sarah, that's such an important point because we all need a purpose, right? We actually all need something to do. And we talk about dementia as a series of losses of function. We've got to remember that people still have abilities and preserve cognitive function and often that preserved desire to do something and boredom can be a reason why people behave in different ways. And so harnessing what, you know, used to matter to somebody and giving somebody something to do.

Yeah, can you help me or can you help? And it can be variable, you know, help in the community, spend some time with my family members, you know, play with my kids, as long as it's safe. But, you know, it's all very dependent in aged Care facilities, doing some little tasks like folding or maybe doing some administrative work or if just the process of doing things. We all have to have a purpose, Sarah. And I think that for a lot of people with dementia, that's still maintained.

It's heartbreaking. There's a lot of grief caring for someone with dementia and they change and they're not quite the parent they were before and they're not as interested in the things that you do that they used to be. And it is that series of saying goodbye to somebody that you love.

Yeah, a series of losses. And people often have changes in their ability to speak as well. So they may not remember or recognise you at your age right now. They might remember you from when you were a baby or a younger person.

Yeah. So I think, first of all, be mindful of your own grief and your own feelings. And I've had people say, I can't go in and see Mum or Dad at the moment. It's just too hard for me. And you have to be at peace with that. You need to give yourself that space. It is difficult and not everybody can cope, Sarah. And I think that's, you know, it's important to realise some people can, but I work with people who can't, and I understand that.

Yeah. But it's good if you. If you can cope, it is good. And just to be there, hold someone's hand, be with them in the moment, see if there's something that you can still share that you enjoy. I love your story of a Downton Abbey. Maybe it's music or maybe it's a show or maybe it's a joke or maybe it's something nice to eat or a story, or just being there in that moment with that person. I always. Perhaps I'm very sentimental. I'm quite sentimental. So I often feel that people still know deep down that they're with their loved one. Particularly if they're close by.

Even if they can't talk to you about it anymore. They might make a mistake. But that's me being sentimental. Not physically.

I think that people can remember that feeling. They may not remember what made them feel good.

But they can have a memory of feeling good. And so people might forget that you were in and out. But that doesn't negate the value of you visiting. It doesn't negate it at all.

And that's exactly what I was tying into that point before, about how often we all still need a sense of being able to do something and not getting. We still need a sense of connection with others too. And I think that's innate and important. Right. Right to the very end. Just that sense of another human being being around us. Even if you can't remember the content of what they said.

Heartbreaking. Whether it's a often call it a coarsening of pre existing personality traits that just become more and more and more

So that can happen. Or people can go from being the most docile and gentle of all people to verbally aggressive and shouting and swearing and ungrateful and hurtful, or even sometimes physically aggressive too. So it's terrifying. It can be, in real essence an issue for safety for a caregiver, physical safety and also psychological safety as well. The important things to remember, which are hard to remember often at the time that these things are happening, is, first of all, it's not them, it's the disease. Secondly, safety is important, particularly if there's physical aggression or you don't feel psychologically safe. You do need to get help with that, you don't need to endure it. So it is important to reach out for help, whether through your gp, whether through a specialist, whether through some support services like Dementia Australia or the Dementia Behaviour Management Advisory Service from Dementia Support Australia. Reach out, take some space away for yourself as well. Walk out of the room if you're starting to get triggered. It's really easy for me to sit here on this microphone and say, it's not them, it's not you and it's not them, it's their disease. And don't take it personally, but it's really hard not to when it's not someone that your parents and you're providing care to, and they were your parent when you were a teenager too. And sometimes it can retrigger some of those old dynamics as well.

So remember your own you know your own safety, remember your own emotion and response. Make sure you are safe physically. Get help, you know, even ambulance. If there's physical violence, we'll call an ambulance.

If there are kids around, think about minimising harm as well in the short term, like knives and weapons and things like that. Really rare, Sarah. But think about safety. Think about your own psychological safety. Give yourself space, get help. And do remember that when you can, that it is usually the disease. But the other thing I wanted to say is that sometimes those changes in behaviour, particularly when they're all of a sudden, they can represent something else going on physically with that person. You mentioned a urinary tract infection when we first spoke about dementia. There could be an infection. There could be, you know, Covid or the flu. There could be constipation. There could be pain as well. You know, we've got pain. We don't quite say. They'll say. They didn't say that they had pain. But they may not recognise it, don't they?

They won't tell you necessarily. That's right. They may not tell you. Oh, upset today and I'm feeling a bit irritable and I was a bit grumpy early on because I suddenly realized I've got quite a niggle in my knee. That doesn't happen.

Have you got pain? No. But you can see by grimacing and by flinching, they're actually uncomfortable. They're uncomfortable when we move them. I can see they're uncomfortable. You know, sometimes I'm not aware of little grumbling, aches and pains. I just know I'm a bit irritable. So pain, you know, is not uncommon as we get older. Particular arthritis and other degenerative conditions. So that's another thing to think about.

So much going on.

Yeah. And then there can be other simple things that make it even worse. So, you know, if you're not hearing well, for example, that can make things even more isolating and stressful. So you're making sure people got hearing aids or glasses or getting their vision. Get your vision checked.

It's a full time job and it's

Yeah. Most types of dementias are inevitably a fatal disease, Sarah, and sometimes we don't think about that because dementia's occurring late in life and we're all mortal and we die at a certain point. But dementia, if you live long enough, will eventually take your life.

It's in a simple way. It starts to affect all of the cognitive and then basic functions, including the physiological functions that keep us alive. And what we often see as someone is approaching their final phases, their final phases of their journey with is starting not to eat very much, having some difficulties swallowing as well and coordinating the muscles.

Well, the swallowing can slow things down because people sometimes can start to get chest infections as well because they're not managing those secretions so well. And you mentioned force feeding. But what the evidence does show us is in dementia, things like we call it nasogastric feeding. So, you know, bypassing someone swallowing and putting a tube into the tummy or a tube directly into the stomach, stomach to feed someone doesn't actually prolong survival.

So having a focus on eating what you can, but being realistic that declining appetite and eating less, they are signs, they're poor prognostic signs, they're signs that you are getting towards the end of your journey. People might not start to speak very much, they might be less mobile. Dementia can affect our walking abilities as well, our control of our gait and now falls and often people become more immobile and recognising that that's happening, it's confronting and it's hard, but it's important to know that these are some of

It can be.

Yeah, peer support, actually, I just want to put circle back to that. Peer support is really, really helpful because it's really isolating being the caregiver for someone with dementia.

are caregivers, there are ways to connect with other caregivers and I reckon that you get more out. It's terrible for me to say as a doctor, but I tell you what, my patients, caregivers who have connection with other caregivers, it's the best thing ever. And you learn so much from each other. Don't do it alone.

Yeah.

Yes, I'm often aware of that elephant being in the room. People are worried mum or dad has dementia. Am I gonna get it? Is it a fait and ple. And the genetics are quite interesting. There's a very rare type of dementia which if you inherit the gene from your mum or your dad, you will definitely get this type of dementia. It is rare and it tends to be what we call a young onset dementias that happen before the age of 65 and sometimes are diagnosed even in 40s and 50s. So people generally have a sense that that might be in the family. Having an older parent with a dementia look, it does increase your risk compared to someone whose parents didn't have that there is a genetic component. But it doesn't mean that you will necessarily go on to develop dementia either. What it does mean is that it is an opportunity for you to do things that can help protect you against dementia in the future. I know people are listening, saying, well, when am I going to find time to do that?

You actually do. And you need to think of it in the way that you'd think about your taking care of your own mum and dad as well. And think about if you've got children in particular, think about them in the future. If I find it hard to think about yourself, think about what the impact on your own family in the future as well, if that makes it easy. You've got to set aside time for yourself. And there are things that you can do, Sarah, to help prevent dementia. In fact, evidence suggests that around 45% of cases of dementia might be able to be prevented just by. Yeah, it's exciting, isn't it?

So here are some ideas. Make a time to see your own gp, check your own blood pressure, get your blood pressure under control, look after your diabetes, if you've got it. Look after your weight, physically exercise, get your heart rate up, but also do resistance and weight.

Yeah, something about chemicals, Sarah.

We all hear this all the time, right? I mean, everyone knows you should exercise. I often ask people, do we want to? Yeah, everyone knows we should do this. How many people are doing it when not a lot of us are doing it? But it's really important, actually, if you're listening today, if you're not, if you'd like to be more active, actually, one thing you can do is think, how can I actually be a bit more active? So for some people it's getting some type of monitor, like a Fitbit or an Apple watch or something that's telling you how much you're doing and keep an eye on it and challenge yourself. Think about opportunistic times, you know, if you're just sitting around, maybe do some sit to stands or lunges. If you're that flexible, take the stairs. If you're able to walk a little bit further, look at a group or an exercise group and get it into your routine and block that out for yourself.

Well, I'm not doing a marathon.

To do a marathon, but start well

But yes, don't smoke, don't drink too much. And sometimes we have to cope.

Look after our own mental health and wellbeing and stress. Okay. And that, again, is important. And maybe you need some professional help with. A lot of us do, with a psychologist or some other type of counseling or a psychiatrist or Medication, but look after your mental health, look after your hearing, get your hearing tested, particularly in your mid to late life. Getting your hearing loss corrected does seem to help attenuate changes in cognition. Look after your eyesight and keep your brain active. Keep your brain not just active trying to coordinate all the care, but doing something that interests you or is good, you know, but makes your brain hurt a bit. But not new things. Yeah, yeah, something new. Have a good diet.

It's pretty basic, but you know, two things I'd say two, take homes, make a time to see your gp, check your own blood pressure, check your own cholesterol level and diabetes, because this stuff seems to be helpful. And the exercise piece as well. Think okay, I've heard it before. But think about how you'll do it.

I had a wake up call one day thinking, what am I waiting for, Stephanie? What am I waiting for? Like go and do this exercise class tomorrow. How many studies do you need to read?

And I just thought, well I did eventually, eventually got through to me. Don't be like me, just do it.

Oh no, no, no.

We've got something else to worry about, don't we?

You know what, Sarah? I'd say that we've got to deal with the negative consequences of all that work. So the stress part is the important part to deal with. Right, so. But keeping your brain active, managing all those things, I'd actually say no, it's actually the converse, Sarah. You're keeping your brain really active by managing five or six or seven different things at once.

We do not need another thing to worry about.

We need to manage the stress that that has. We know, for example, we need to make sure we're sleeping well at night as well. We need to do what we can to manage all these things. And we need to remember that we are human beings, each of us, each and every one of us. We're not AI. We're not little robots that are capable of doing 500 people's jobs. We are one person. Often you do what you can. Can't be perfect at everything, but you can't sacrifice your own health and wellbeing for the person you're caregiving. It needs to be a balance. You need to look after you and that person, both of you. Okay. You have to care for yourself as well.

I'm going to go to Pilates, Sarah.

So that was my breakthrough when I thought, how many of these studies do I need to see that show that it might be protective? I'm booking in for a class in the morning, so I think that, yeah, life's a lot easier if you've got a stronger core.

Thank you.