Ep 28 Dementia With Dignity

Many family are supporting someone to stay at home while they live with dementia. In this interview with Lyneta Russell from Alzheimers New Zealand we look at some of the tools available to support their family member to live with dignity and retain what control they can

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Episode 28 – Dementia with Dignity 

Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a loved family member or friend in their last days, weeks or months of life. 

Our episode today is Dementia With Dignity

Denise

Hi, I'm Denise van Aalst, a senior palliative care nurse and educator with the Otago Community Hospice. Today I'll be talking with Lyneta Russell, Principal Advisor for Services and Standards for Alzheimer's New Zealand. Good morning Lyneta, thank you for joining us. 

Lyneta 

Good morning Denise, great to have this opportunity. 

Denise 

Lyneta, I was really keen to talk to you because increasingly, we have people managing at home caring for a loved one with dementia. And dementia, of course, has a variety of names. And it has a variety of presentations as well doesn't it? So perhaps we'll start by talking about dementia and Alzheimers and explaining what the different terms mean.

Lyneta 

So yeah, we often get asked what is the difference between Alzheimers and dementia? And Alzheimers is one type of dementia. And there's around about 150 different types of dementia. And the ones that we’re most commonly know, are Alzheimers disease, Vascular dementia, Lewy Body dementia and Frontotemporal dementia. So all of them, the symptoms that we see depends on the part of the brain that's affected. But generally for Alzheimers disease, we see that it's a memory issues that are apparent first. And that's what most people when they think of Alzheimers disease, they think of people who have difficulty with their memory. For vascular dementia, that is, as the name suggests, it's very much related to our vascular system, how the blood gets around our body. And if there's damage to that, that means there’s restricted flow of blood to parts of the brain. And sometimes people have had strokes and heart conditions, they're more prone to a vascular dementia, not always, but sometimes. Lewy Body dementia is yet another type of dementia. And people with Lewy body dementia, often it’s hallucinations, that are a feature for them. And then finally, Frontotemporal dementia, and this is a dementia that impacts more often on younger people with dementia, people with young onset dementia, and by young onset dementia, I'm referring to those that are 65 or younger, when they get their symptoms. And often it's to do with personality type changes, they might do things that are really, really out of character for the person. And that is the alarm bell, that it might be a Frontotemporal dementia.

Denise 

So when it comes down to helping support somebody with it, it is important to know the difference between you know, what kind of dementia we are dealing with, but actually, a lot of the same factors will still arise, won't they, when we're helping support somebody at home?

Lyneta 

it's more about the person. It's much more about the person and I have a saying, you know, if you've met one person with dementia, you have met one person with dementia. It's not about the type of dementia, that impacts, of course it impacts, it's impacting on their brain. So it must make a difference to them. But we're all individuals, and we're all a little bit different. And so how we meet and support somebody with dementia has to be related to them as an individual as much if not more than them as someone with dementia.

Denise 

Lyneta, I really like that, that's such a key thing, isn't it? Because they’re still them, you know, just because maybe their brain is not working quite as well as it used to, they are still them and we still need to think of them as that individual with all of those same life experiences and who they are as a person. And individualising what we're doing with them based on what they need.

Lyneta 

Look, absolutely, I work with the Alzheimers New Zealand Lived Experience Advisory Group, an amazing group of people that are living with dementia. And this group put together what they call the Dementia Declaration. And the Dementia Declaration is available on our website. But it ends very much with those words that you've just used, just a little bit different. But I am still me you know, I am still Me. They say that as New Zealanders living with dementia, we’re citizens whose lives matter, we have the same rights, privileges and obligations as everyone else. And it sets out seven things that people can do to help people with dementia live their best possible lives. So it's a good one to look at.

Denise 

It is a good one to look at. And what I really like about the Dementia Declaration, is it was written by a group of people living with dementia. This wasn't written by somebody else saying, ‘this is what we should do for them’ actually this is people who live with dementia, saying, ‘This is what’s right about us’. 

Lyneta

Absolutely.

Denise

And it’s celebrating still the person, you know, not focusing on the disease. 

Lyneta 

Yeah, absolutely. And you know, that's very much what people with dementia say they want.

Denise 

Lyneta, you touched before on memory concerns. And I think that is often the first thing we think of isn’t it, when we think about dementia, we think about people being forgetful. And I think it's really easy to say, especially if somebody's feeling a little bit older, that if they forgetting something, you know that ‘ooh, you know, maybe that's a sign of dementia’. Actually, they’ve just got a lot in their heads, and they probably forgetting some things. Do you think there's a key turning point when it's more than just forgetting a few things?

Lyneta 

We all forget things from time to time. There's no question about that. But it's the extent of that forgetfulness, because usually we go on and do something else, and it'll come to us a little bit later. But for somebody with dementia, that recall doesn't come, they don't have any sort of, you know, moment when a wee bit later, they think ‘aha, that's what it was’, which is what we usually do. And for them, it's probably more likely to be dementia. However, I would really, really stress that not all issues concerned with memory, are caused by dementia. If they’ve got some concerns about their memory or concerns for somebody else, it's really important that they get a thorough medical and cognitive assessment by their GP or Nurse Practitioner, as it could be that the cause is physical and perhaps treatable, rather than cognitive decline or dementia. 

Denise 

That's such a good point Lyneta, you know, because we may well risk missing something that's really significant, and potentially treatable by writing it off as being just old age, and to be expected. 

Lyneta 

That’s right. And sometimes it can be something really simple, particularly for older people, it can be something like a low grade urinary tract infection, that may cause them memory problems. And the longer that goes on more likely people think ‘oh, it's dementia’, but you know, anything get it checked out by the GP or Nurse Practitioner. 

Denise 

Good advice. As far as managing the memory, so I'm a great list writer, I write lists. And in fact, I've been known to write things on a list that I’ve already done just for the sheer joy that I can tick it off. So I'm guessing writing lists is still a good technique for keeping track of things if we're recognising either in ourself or in somebody we're living with is having some memory issues. What other tips have you got for managing that?

Lyneta 

I mean, writing lists is dependent on a number of brain functions that may be impacted by dementia of course too, so writing lists might not be an option, even early in the dementia journey, but it's important to put things in place as soon as possible to maintain the person's dignity, their confidence, and of course their independence. And so there are more and more tools that are becoming available to support people in the early stages of dementia. Things like clocks, watches, phones, that you know, you have reminders and so on. I would also suggest simple tools like labelling cupboards, so that you don't have to go through every cupboard in the house to find something. That it’s labelled, and you can see from the outside. Putting appropriate signs on doors, such as a picture of a toilet can be a prompt. But as dementia progresses, and the memory loss has become even more pronounced, then gentle prompts, to try and get those longer-term memories can provide comfort for the person with dementia. And that can be a communication link as well, because often it's so difficult to have a conversation. But some of those memory prompts can prompt the conversation. And that’s things like you know, photos of family members when they were younger, and more likely to be recognised by the person.

Denise 

I’ve heard you mention images a couple of times so I'm picking from that, images might be more helpful for some people rather than written words?

Lyneta 

Absolutely, yeah. There again, it does depend on the part of the brain that's affected. But often images are much more useful. Particularly as I said, you know, putting photos of things on doors, things that are recognisable. Because sometimes we look at images that are modern images, but we've got to remember that the person will be going back to earlier memories. And so we need to think of images as being appropriate for the age of the person.

Denise 

So that's another good point, then isn't it that when memory’s affected, it's most often the short-term memory that's affected rather than the longer term memories or older memories. So using that is another tool isn’t it, by by reflecting back, as you say, images that were familiar from years ago, using that as a way of moving somebody through what's happening right now, rather than trying to expect them to remember something that I said this morning or last night?

Lyneta 

Most definitely. And the other thing is that music is often something that is used a lot for people with dementia, you know, and there's no doubt that people respond positively to music. And there's been some research done, and I can't remember the exact age, but it's something like around about the ages of when you're 17 to 23, and that is the music that people recall most fondly, and easiest recall. 

Denise 

17 to 23. That makes sense, doesn't it? Because it's an age, when you're perhaps stepping away from your parent’s music, and starting to make your own choices about what you're listening to, that approaching adulthood. So it makes sense that that's the music that's going to have the most impact and familiarity for you. 

Lyneta 

Yeah, it's really interesting. And I don't know that I have got those ages quite right. But it's something around that those ages. 

Denise 

That makes that makes good sense. The other thing that I'm aware can be a bit of an issue for people Lyneta, is people worry about somebody they’re living with wandering, and I know that you don't really like the term wandering. Actually, it's people just needing to walk isn’t it? 

Lyneta 

I mean wandering to me implies walking aimlessly, you haven't got a purpose. And what I would say is that people with dementia, like to get out and walk independently just like you and I do, in their community, you know? And if asked, they can't always say where they're going, or why they're going there. But that doesn't mean that they don't have a purpose. It's just that they cannot necessarily express the purpose and why they want to go out. And, you know, normally they can do so safely. If they've lived in a community for a while and they have familiar routes and all of that sort of thing. But sometimes things get in the way. And think of our roads and footpaths currently, and we've got those horrible cones planted all over the place. So if somebody with dementia was walking around in their community, and their normal route is blocked from those cones, they might get lost, okay, and then people start to get all concerned they're getting lost, you know, ‘we can't allow them to go out walking in the community’. We just need to think that that's an environmental cause. But if somebody wants to go out and walk, it's really important to their physical wellbeing, it keeps your musclesworking, it's great for your social wellbeing, because when you're out and about, you're seeing people, you're probably chatting to people on the street. And it's also good for your psychological, wellbeing, it really does feel good. And, and so instead of preventing them because of concerns for their safety, there's heaps and heaps of technology out there that can support people to walk independently. And I would really recommend people go to the Safer Walking New Zealand site. It's got some fantastic information and resources on there. 

The other thing that I would say, is that we need to remember that there is a dignity in risk. We all take risks. And people with dementia have the same rights, obligations and privileges, as everyone else, as the Dementia Declaration says? So why shouldn't they go out and take some risks as well. Sometimes I fall over if I go for a walk, you know, but if somebody with dementia was to fall over, everybody would get into a panic state, but it's just a normal part of living in many ways. One thing that does happen sometimes is concern about people getting out is that they might lock the doors to the house to prevent the person with dementia from going outside. And the risk with that kind of action is that that will cause frustration and agitation, because they've got it in their mind that they want to get out and go for a walk. And if something's preventing them that they don't necessarily understand what it is. And so it's really better to look for other options rather than locking doors would be my recommendation.

Denise

Yeah, and I understand what you're saying. I guess, our concern might sit if I'm living with somebody at home with dementia is, I feel a great deal of responsibility that if something happens to them it's my fault. But actually, it's a little bit of balance, isn't it? And, and I like that concept of allowing them to live their lives. So how can I keep them safe? You know, there are tracking devices. There's other ways of keeping an eye on them. It might be, if possible, having somebody go for a walk with them. I guess there's always that, that locking the doors is an option. But let's consider all these other options, as well. Before we just go to that.

So, if somebody wanted some advice around that Lyneta then they could go to the Safer Walking New Zealand website. We’ll have that address at the end today. Or they could also come to Alzheimers New Zealand for some advice around that. 

Lyneta 

You could go to the safer walking site most definitely. Or they could also go to their local Alzheimer's organisation or dementia organisation. 

Denise 

It's nice for people to know that there are options.

Lyneta 

There are options and there's lots and lots of support out there. 

Denise 

Yeah. We talked about that agitation that can arise Lyneta and sometimes that there might be a really clear reason for that agitation if we just take a step back and have a look, such as their wanting to do something that they can't explain to me. What are some of the other things that it's worthwhile knowing and understanding about an agitation that sits within a dementia?

Lyneta 

Some agitation can be linked to the type of dementia and the part of the brain that is being affected but it's also likely that it's caused by frustration, of not being able to express a need, or because something's not being met or because of pain, or constipation. There can be a number of different reasons for that agitation and aggression. And so it's important to keep calm, of course, you know, that is most important thing. And to think about the person, perhaps look at the environment around that person, what might be causing them some distress or frustration. Simple things like leaving a curtain open at night can cause a shadow and the shadow looks like a person and lying on the floor. And that can cause real agitation. Looking at the environment, thinking about the person, thinking about what their needs might be. If they haven't been to the toilet for the last couple of hours, it might be that they just need to go to the loo. They may be hungry, they may be cold. It's just exploring all the possibilities of what might be impacting on that person, but that they can't say what their frustration is that's leading to that agitation and aggression. But if they have reached that stage, it's just really important to stay calm, not to argue with them. They may be saying things that you know, are absolutely untrue. But arguing with them will only lead to further frustration and agitation. Go along with them, go with the flow, I say. And if possible, try and distract them, you know. Maybe some music, maybe looking at photos that are nearby, maybe well come and help me cook the dinner or something like that. And just try and use what you know about the person to lead them in another direction.

Denise 

And because actually, if this is a family carer, they do often know them really well, don't they? So, actually, what is the most likely to be successful and distracting this person? Or what's most likely to be the root of their concerns? If we know who they are innately? 

Lyneta 

Absolutely. As they go along the dementia journey, they'll become more familiar with those triggers, they'll be become more familiar with the things that might set somebody off to be a bit more agitated. So it's important to take note of those things. But I'd say it's also important to write them down, to share them. Because as a care partner, you never know when something might happen to you. And so to ensure that that person continues to be supported, as well as possible, it's important that other people have that information. Because the person with dementia isn't going to be able to share that information. So write it down, share it with friends and family. What works? 

Denise 

And that's a good idea, anyway, isn't it? Because that's sharing the load. Often we can feel really isolated and alone when we help and support somebody. Actually, now's the time to use those networks, allow others to help us and share this information so that they can do that successfully.

Lyneta 

Absolutely. I don't think you should be selfish about it, I think you should share as much as possible. And it's the benefit of the person who's the care partner, but it's also for the benefit, I think of the person with dementia. You know, we all like a bit of variety of people in our life. So why wouldn't somebody with dementia like some variety as well?

Denise 

Good point. Lyneta, I was struck when you mentioned about being unable to express what it is that they're needing, if the dementia has started to impact further. I wonder would having images on a card, would that sometimes be easier for people to communicate if they can't find the words, but do they recognise for example, images of toilets or trees to go outside or images suggesting pain? Is that an effective way of helping somebody with a dementia communicate?

Lyneta 

Oh, absolutely. It mightn’t necessarily work for everybody. But for some people, it can be really, really useful. There again, they need to be age appropriate images. Images that, you know, are perhaps embedded in their longer term memory. But no, that's a great idea Denise.

Denise 

OK great. So part of what can happen, of course, if we’re supporting somebody at home is supporting them around personal cares isn’t it? And that might be around their continence or helping them just to wash and dress, or maybe meals. And that's very broad. And also, with all of the different forms of dementia, there would be different impacts of that. Is there any particular key things that you think are worth keeping in mind? Big question, I know.

Lyneta 

Oh look it is a big question. But you know, still, if you've met one person with dementia, you've met one person with dementia. So everybody is going to react a little bit differently, both in terms of their personal cares and other issues, like continence. So if I talk about the personal cares first. Sometimes a person does start to resist personal cares, there's no doubt about that. And I don't have a magic answer for how to get around that. However, you know, you need to just think about the person. And what were their patterns throughout their life, because there can be a number of reasons. It might be that, you know, they've always been a very private person. And so they're not used to somebody else being present when they shower. Or it might be that they're being encouraged to have a shower at a time, that doesn't work for them, that they’ve never had a shower in the morning, they've always had their shower at night, and now somebody's trying to get them to have a shower in the morning. And with some of the pressures around support, like a support worker coming into your home, or even, you know, in aged residential care, those kinds of things can happen. Just think about what their normal patterns have been. And then have a look at if they were resistant, like going into the bathroom, have a look at the environment in the bathroom. You know, is there something that might be frightening? There might be a dark mat on the floor, on the entrance way, going into it for some reason, or, you know, even outside the shower to collect water. And that might look like a big deep hole to the person with dementia. And so how frightening would that be? Is the room cosy and warm? Or the person that’s showering them, is that person known to them or not? And if they're known to them, they're not used to having a spouse or a family member participate in their personal care. And so that might be frustrating, and off-putting for them. But likewise, if it's a stranger coming in, particularly if it's a stranger every different day, then they're quite likely to resist that. And let's not get too hung up on our own needs for personal hygiene. Because, you know, if you don't have a shower every day, it's not going to matter too much. So some days, you're just gonna have to say, ‘Oh, well, we'll just leave it today’ and take a deep breath and walk away. 

Denise

And Lyneta, I remember as a child, we used to bath once a week and we topped and tailed in between. So again, if somebody is living, you know, perhaps back when they were younger, that showering every day could feel really wrong to them, and once a week is appropriate. So if we’re thinking back about how things were when they were younger and trying to almost replicate that, replicate what's familiar, that might help ease some of these worries for them mightn’t it?

Lyneta 

Most definitely. Very, very good point. 

Denise

And the continence Lyneta? Is that often a problem?

Lyneta 

We know that managing continence can be one of the biggest challenges for supporting someone with dementia. And it's often the reason why somebody will go into aged residential care. And sometimes the challenges start early in the dementia journey, but sometimes later. But I would say it's really important to try and maintain continence for as long as possible because it's really about the dignity and the self-esteem of the person with dementia. And also, if you maintain continence for longer, it makes life a bit easier for the care partner and support people as well. So I would suggest that when a person starts to have accidents, look at the environment. And is the pathway to the toilet obvious? You know, it just might not be to the person with dementia? Is there a toilet sign on the toilet door? Is there a coloured toilet seat to make it obvious where the toilet is. And that works wonders. Sometimes, accidents are not due to incontinence, but due to the inability to distinguish the toilet because of the perceptual issues, because of the part of the brain that's affected. And the person with dementia is not seeing things the same way that you and I see things. But if after checking the environment, and in making sure there's nothing that you think might be impacting on their continence, it's really important to get help and advice rather than just going to the local supermarket and getting over the counter continence products or pads. Really important. And so I would say ask your GP or practice nurse, Nurse Practitioner for a referral to a continence nurse if you've got concerns, or go online, and there again, Continence New Zealand has a great website, and all sorts of helpful suggestions on that website.

Denise 

It's a good point, though, that we should get checked out because that continence might be related to a urinary tract infection, rather than actually being forgetful or you know, something else. It might be something that's simply treated. And life can carry on more easily. So getting advice and talking to someone else is always going to be a good idea. And probably a good reminder that while people who are supporting someone at home might feel very alone, they don't need to be. There are places that they can reach out to for connection and support.

Lyneta 

Most definitely. And it's really important to do that. Because you know, if you accept that something like continence is happening without exploring it, it might be that you're absolutely contributing to the issue. Because it's something I like to talk about a lot, really, and it's, it's sort of, I would call it being too helpful. But that's not necessarily related to the continence, but for other things too. Sometimes we can step in and do things that we think are helpful, like perhaps you know, have having a few accidents would just get a continence pad that makes it easy. So what does that do? That just, without exploring the other possibilities and what else could happen, it leads a person into a more dependent state, and it impacts on their dignity and all that too. You know it’s about it's that difference between caring, and supporting. Because caring is doing for, supporting is kind of walking alongside. And someone emailed me this week, and she talked about her relationship with her husband, who has dementia and she talked about being the co-pilot. And I thought that was amazing. She was there to support his strengths so he could continue to do what he was capable of doing for as long as possible, not taking over, and not making decisions for him. But often you see what people do and I've been, as a nurse been guilty of it, is that we step in, and we do for people instead of supporting them to do for themselves. And if people don't continue to do what they're able to do, they lose the ability. So often we want to help out of the goodness of our hearts to make what seems a struggle easy, but we do need to stand back and think about whether we're actually helping or contributing to the loss of their skills. And this is particularly relevant for people with dementia. And an example might be like, you know, doing up someone’s shirt buttons. It takes longer when they do it themselves. But let them do it. What does it matter if it takes a little bit longer? Or feeding them with, you know, when they're taking a long time for their food, and it's getting cold in the process. Look at other ways, you know, special cutlery maybe, or maybe you've just got to reheat it once or twice during the process. It's really important to maintain those abilities for as long as possible. And there again, doing so helps maintain the dignity and their feelings of self-worth.

Denise 

That's such a good point Lyneta. I really like that. And it comes back to that supporting them to maintain their dignity doesn't it? And yep things might take a little bit longer but when we can, allowing them still those choices, that self-control, it's what we would want. 

Lyneta 

Oh look definitely. And in the dementia declaration. You know, people with dementia say it's what they want too. And that's what's really important isn’t it? 

Denise 

Yeah, Lyneta we talked before about agitation. I'm aware that for some people, in some instances, nighttime is worse than the daytime, and they can end up having quite disturbed nights. Is that common? Or is that not perhaps as common as people might think?

Lyneta 

It can be very common. Having dementia doesn't mean to say that you have disturbed nights, the two aren’t necessarily hand in hand, because you know, that can be different for each individual, but it's very likely. And disturbed nights is something that really impacts on other people living in the house as well. And we all need a good night's sleep. And if we've got the added demand of supporting somebody with dementia, it's even more important that we get a good night's sleep. So I would say that the most important thing to do is to try and maintain really good night day patterns. So ensure good daylight, and lights on during, you know, sort of more dim days, and making sure there's darkness at night when the person is trying to sleep. And all the other things that you and I do to, you know, if we want to have a good night's sleep. We don't have coffee late, we don't do stimulating things late. And so it's exactly the same, leading the person into that restful kind of state. Also encouraging them to stay awake in the daytime. You know, if they're bored or unmotivated, they're likely to drift off and have daytime snoozes. We do it and people with dementia do it too. And that doesn't contribute to a good night's sleep. So, activities that can be physically, mentally, socially stimulating during the daytime will also help lead to a good night's sleep. 

Denise 

That's some really good tips around helping someone get a better night's sleep. I like the sound of that. Because the point of a lot of this is also supporting the person who's supporting the person with dementia, you know we touched before that they can feel really alone, but it is for them to reach out and get the support they need, so that they have the energy to keep doing this.

Lyneta 

Oh look most definitely, they've got a really, really important job. So to do that important job, they've really got to take care of themselves as well. So yeah, most definitely.

Denise 

We have some other topics on the podcast about self-care, so I would recommend listening to those. And allowing others to help is really important and you've said about, you know, making sure that they have the tools so that when others do step into help, they know what's needed.

Lyneta 

Very much so, you know, I can't say strongly enough, have an emergency plan and that emergency plan isn't necessarily about having all your medical details there what pills you take and all that sort of thing. You know, you can get that information anywhere. It's the things that what works. What what are the things that work to make a person with dementia have their best day? And that's the tricks and the treats, what times they like to eat, you know what they like. Simple things like whether they have sugar in their coffee. All of those simple things that make their day go well, because you never know when the person that's caring, supporting is just no longer available. And it might be the person with dementia has an acute admission into age residential care or something like that. And how will they know if they haven't got somebody to tell them what works. And so that's really distressing for the person with dementia. But having that information is just as important, and I would really say even more important than the medical information that goes with the person.

Denise 

Yeah, that makes good sense. And then with that really, it is around, celebrating when they are feeling well, when they are most themselves. And enjoying those times isn't it? 

Lyneta 

It's very true. When we think of people with dementia, often the images is to the end of the journey, and to people who have very, very limited capacity to engage, or to do things for themselves. But even people at the end of their journey, there are moments of connection, you know, really, really positive moments of connection. And it's important to enjoy those moments when they come because they're very, very special moments. And at other times, it won't be as easy and there won't perhaps be, you know, those moments. There'll be moments when, you know, the person caring will say, you know, I just can't do this any longer, this is just too hard. Look, you know, it is hard. And acknowledging that is one step on the way and then reaching out for help, because there's lots of help around, is another step. We cannot do everything. We just cannot do everything. And so it's really, really important to use all the wonderful resources that are out there.

Denise 

Take a break when you need to and reach out for support to enable you to do that.

Lyneta 

That's right. And then when you are frustrated, just saying ‘Well, you know, I've got a big job, I'm allowed to be frustrated sometimes’.

Denise 

That's right. Don't expect yourself as a family member to always be perfect.

Lyneta 

No, no, not definitely not.

Denise 

They’re doing an amazing job. Well Lyneta thank you for joining us today because you know this is an insight into supporting somebody with a any form of dementia. And you know, I just know that this will be helpful for people who are trying to do the best they can, as so many people are. This is some tools to help them in that journey. So thank you for that

Lyneta 

Denise, I think you've given me an amazing opportunity to cover the things that are really dear to my heart and the things that I see that perhaps cause the most distress, particularly to, to people that are living with dementia in the community. So it's been a great opportunity. And I thank you very much for giving me the opportunity.

Denise

And thank you listeners for joining us today. This podcast was brought to you by Otago Community Hospice, with support from Hospice New Zealand. 

If you would like to know more about Alzheimer's NZ please visit their website https://alzheimers.org.nz/

The other website that was mentioned is https://saferwalking.nz/ which has resources and advice for supporting people who have a risk of going missing.

If you found this discussion helpful, check out our other episodes of Ending Life Well, a podcast series for carers. You can also find more resources for caring for a person who's dying at otagohospice.co.nz/education