Still Deciding
Making Decisions After a Dementia Diagnosis
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello. My name is Kevyn. I am a First Nations advocate with Dementia Australia. For more than 50,000 years, we have come together to trade knowledge, to learn and to teach. Today, we join to keep up that tradition. So, with that in mind, we now pay our respects to the Traditional Owners, to Elders past and present, to those First Nations people joining us here today.
[Timothy and Ann talking at home]
Timothy: Well, my dear, I suppose we should start thinking about clothes to take for our trip. Have you thought about what you'll need to take? How many different occasions are there? How many different events are there?
Ann: I’ve got meetings and a dinner and flying up and flying back, flying back will be amazing. There'll be days where I'm wearing different earrings, and Tim will say, “Do you realise, you know, you've got one of these and one of those”. And so, I'll, you know, go and change one of the earrings. And perhaps be a bit terse, but in actual fact, I'm really pleased that he's doing those things and telling me that, you know, you've got dirty clothes on. I mean, it's, I don't want to have, wear, dirty clothes.
Timothy: Look, there's no training for this. It's just you do it on the job, you learn on the job, and you make mistakes. I suppose I've made mistakes at times where I'm too directive to Ann and she doesn't like that. It's important to respect the other person, to listen to them, to affirm them, to be encouraging, to be treated with respect and with love in our case, and to be life affirming.
Jim: This is Hold the Moment. It's a podcast from Dementia Australia. And these are real stories from people living with dementia or caring for their loved ones.
Hamish: I'm Hamish McDonald. I cared for my dad who was living with Parkinson's and Lewy body dementia.
Jim: And I'm Jim Rogers, and I'm living with younger onset Alzheimer's. If you're a carer, you'll be thinking a lot about how to support your loved one and their decision making. So how do you do it?
Hamish: Timothy Pietsch cares for his wife, Ann, who lives with Lewy body dementia. Timothy is committed to supporting Ann in her decision making. But, he says it is a constant balancing act, one that starts at diagnosis.
Timothy: I think I was very affected by it, initially. I was very sad at the diagnosis for Ann. But we had to make some very big decisions pretty quickly, like well, within two years, we sold the house that we were living in. Ann had to give up work. So that meant restructuring our finances, and that was a bit to our detriment. But those things had to be done, so it enabled us to plan for the future in a positive way.
Jim:Because those decisions are huge, aren't they, after that diagnosis? And so how do you find on a day-to-day basis now, you feel with Ann, where do you have to sort of step in a little bit to help and where do you have to back off?
Timothy:Oh, it's a moving feast, Jim. And I'm sure I don't get it right all the time and of course, it depends on the particular issue. There are some, of course, very serious issues to do with when we talk about end-of-life issues or care issues. And I'm there to support Ann and make decisions together with her. But for the daily issues, there are times when I need to provide guidance, encouragement, to listen to her, to affirm her, but also to provide some fairly direct advice at times. For instance, Ann used to be a very good cook. She's not interested in cooking anymore, so I do the cooking. I'm not the cook that she was, but I have to really encourage her to eat and drink appropriately. She doesn't drink alcohol anymore, but she’s often, that means a bit of coaxing for her to eat.
Jim:Reminding
Timothy: Yeah, exactly.
Jim: Do you find, as you've progressed over time, that you rely on Tim a lot now for decisions that you used to quickly make? That now you feel a little bit unsure, and you sort of have to trust and lean on Tim?
Ann: I do. People think, you know, I'm fine. You know, there'll be days where I'm wearing different earrings, and Tim will say, “Do you realise, you know, you've got one of these and one of those?” And I'll say, “Oh, it's the new trend”.
Jim: You have to be the fashion police.
Ann: Yes, yes. And he does. And so, I go and change one of the earrings, and perhaps be a bit terse, but in actual fact, I'm really pleased that he's doing those things and telling me that, you know, you've got dirty clothes on. I mean, it's, I don't want to have, wear, dirty clothes. And yet, Tim can help with doing things like that. He does, honestly, he does most of the things during the day, and he's such a help and I don't give him credit for the things that he does for me and I love him.
Jim: It must be very difficult for you Tim with the small things, even down to what Ann eats, to the financial side of things. How do you sort of work out when to take Ann's input and when you have to take the lead for those sort of things?
Timothy: Look, there's no training for this, as you know, Jim. It's just you do it on the job, you learn on the job, and you make mistakes, I suppose. I've made mistakes at times where I'm too directive to Ann, and she doesn't like that. She was a very independent person and had a senior role with the, she was an advisor to the Health Commission in Victoria, but, and very competent. And I think, look, it is a matter of me listening to Ann and then working out how best to actually help her. But there are small issues, like, if I can mention one issue, it's a tiny bit against Ann, I suppose. And I don't mean to be disrespectful, because we are respectful. But often Ann, when we're going away, like when we come here, Ann will like to pack the morning that we're flying interstate. And sometimes there just isn't time to do that. And she, I say, “Look, we really need to pack those suitcases the night before”. And there are lots of excuses why that can't be done, because, you know, she's going to use her makeup in the morning or whatever. And sometimes Ann resists that, and it means that I haven't got the time to help her, advise her what clothes to take in the morning, because I'm getting myself ready and so forth. This time she did it, she packed the day before, and it was so much better. And that took a bit of persuasion on my part. And I think Ann sort of realised that that was a better, better thing to do.
Jim: That's a really good example. And also, it makes the whole thing smoother and nobody's getting wound up or irritated. Have you noticed more of those things with Ann putting stuff off as she's progressed slightly? Do you think that's one of the changes you've noticed and somewhere where you have to step in a little?
Timothy: Yes, I think her time management isn't what it used to be. So, I have to constantly remind her, we'll be going in quarter of an hour, we'll be going in 10 minutes, we'll be going in five minutes, or things like that. Because Ann will tend to think she's got more time up her sleeve than she really does have. So, I've got to often remind her about timeframes.
Jim: Are there times when things happen and you have to, for you Tim, have to think, you can't just barge in and make the decision? You've got to tread carefully and sort of win Ann around, so to speak? Are those, can you give us any sort of examples of that?
Timothy: Well, there was a big, important decision that needed to be made. We'd been living in the Adelaide Hills for 11 years. We brought up our four sons there, and then we moved to what we thought would be our sort of semi-retirement house. It was a lovely new house, two story house on a park, lovely environment, overlooking trees. Within six months of us moving in, Ann was diagnosed with dementia and I realised that we couldn't stay there for too long.
Timothy: We stayed for about another two and a half years, but we had seen a retirement apartment that I knew would suit us very well. And I had to persuade Ann that we would need to move out of our lovely house in Glen Osmond into this apartment within a couple of years. And that took a reasonable amount of persuasion. Ann was still a bit reluctant, because I think it reminded her of some of the visits that she had made when she was working for people who lived with dementia and visiting them in their homes. Well, it's turned out to be an excellent move. That was 11 years ago, and we are in this retirement village, only 33 apartments, and we have very good friends there. And Ann is very, likes living there a lot.
Ann: I'll even say that it was a good decision, but I didn't want to go.
Jim: No, very, very hard to let go of your home.
Ann: Yes, and also,
Jim: Who you are, I mean, it's a big adjustment, right?
Ann: Yeah, and to listen to Tim and to trust him, because there's a lot of trust there,
Jim: Yeah, but it's letting go of a piece of you in a way.
Ann: It is, it is.
Jim: Your career, then your home. It's like, it's all of those things have to
Ann: All happened at once. And I guess because I was such an independent person, I didn't, I didn't like somebody doing those things. But, it's the best decision we ever made.
Jim: How do you, both of you, actually communicate when it comes to decision making? Do you have a strategy to sit down and discuss it, or how do you sort of go about some of these decisions now?
Ann: A lot of it's really just trusting that Tim has my best interests at heart. And sometimes there'll be times where I think, oh, I'm not sure about that, but it works out. And you’re usually right.
Jim: He’s usually on the money.
Ann: He's, yes he is, and I've trained him well.
Timothy: We'll go out for a coffee and we'll talk. We'll talk through an issue. We don't labour over issues terribly much. We tend to sort of get on with it, you know, talk about something or other, and then get on with it, implement it. I think, when you're, when you're a partnership, and you're on an equal footing without any pre diagnosis like Ann has, it's all give and take all the time. You're giving and taking and respecting each other's point of view. When a person is diagnosed with dementia, it's, there's a shift in the dynamic between both of us, between the two of us, I think. Where it goes more to being, you know, the carer and the person who's being supported.
Jim: And that's a big adjustment in itself, isn't it?
Timothy: Yes, it is.
Jim: Especially if somebody's got quite a powerful personality, a big career like Ann. And you know, there's a lot of things that are in that balancing act.
Timothy: Indeed, Yeah, indeed.
Jim: Is there, is there any sort of supports that you lean on for decision making? Do you find that you do it just yourself, or do you outsource some help from supports anywhere?
Timothy: We do have close friends, in particular, two friends who we divulge quite a lot with them, and we get advice from them and pass things across them from time to time. And don't always agree what they have to say.
Jim: But it's always good. Two heads are better than one, right?
Ann: And sometimes it's through talking with other people that you actually come to the decision itself. And it might be that I'm not really keen on the way Tim's handling something, but by the time we've had a decent open discussion with other people, I'll come around and think, yes, you know, that was the right support and the right way of doing things.
Jim: So, Tim, you're careful not to just barge in and take over. But are there times when you have to do that?
Timothy: Well, I think back to, I was a manager when I, before I retired work from, with, the Department of Premier and Cabinet. I managed IT staff. But I think there's an analogy and situational leadership. So, leadership can vary. The type of leadership that you give to a group can vary from being very collaborative and seeking it, seeking a sort of a consensus about which way to go, to being very directive. And I give the example of, if there's a fire in the building, you don't ask your team members, “Now, how do you think we should approach this”, and “Who would like to, you know, do this” and so forth. You just put on your hat, which says, you know, I'm the warden, and you get everybody out of that building. And, of course, supported decision making is a continuum between that and the very collaborative and, you know, sort of seeking advice and listening. And there have been times when I've said, when I've had to make decisions for Ann without too much consultation, particularly with certain things that can be safety issues. Like, at one stage, her shaver for her legs, she'd leave on the shower room floor, the shower cubicle floor. And I'd say, “No, that's not to be, do not do that for your own safety and my safety”. Things like that. It was a moving, it's a moving feast.
Jim: Something else I wanted to ask you, Ann, is you presented, I know this from my notes, that you presented at conferences about support and supportive decision making. It's a really important topic for you, because I know you understand a lot about it. What do you want other people living with dementia to understand about decision making? What's important for them on this journey?
Ann: I think, really, it's important that you've got to remain humble, and you've got to have respect for your partner or your family member who is helping you along this way. And that you're not going to be capable of doing all the things you thought you could do. And just be honest and take that advice and take this the help that you can get. And I know that that'll go on, and there'll be times where Tim is doing more for me and making more decisions. And it is hard for me, but it's hard for Tim too because he knows it's hard for me. And it's really important though, because you need that help. Otherwise, you're just living in a muddled mess, trying to make decisions, trying to get through the day, and you can be overloaded with these things, and you know what it's like? If you get anxious, you can't make any decisions. And I think that it's, for somebody living with dementia, giving up some of those aspects is really difficult.
Jim: They’re big milestones, aren’t they?
Ann: It's a real challenge. But, and a lot of people don't have the beauty of having somebody like Tim. And some of them are by themselves, and they might have some external help making decisions, helping them. You just hope like mad that they, other people, the input that they have is actually got the person's heart.
Jim: Their best interests
Ann: Yeah, and that they really care about that person as an individual with their own individual needs and things, and rights. You know, I've got the right to say, no, I don't want that, but I've also, you know, know that Tim is really
Jim: Has your best interest at heart.
Ann: Yeah, I trust him.
Timothy: It's important to respect the other person, to listen to them, to affirm them, to be encouraging, to, at times, prompt them, help them with prompting for, you know, what might be good advice But on the whole, just treating them as they have the right, of course, to be treated with respect and with love in our case, and to be life affirming.
Craig: Supportive decision making, in itself, is much bigger than just some laws. It's, it's every little detail about how we interact with each other and the ways we come to trust another person. To share those things that we might need in order to have help on those decisions about our life. But that requires a bit of a legal structure to enable it to happen.
Hamish: If you're supporting a loved one in their decision making, you're going to have to work through some thorny issues. How do you know you're honouring someone's wishes when their wishes start to change?
Jim: Yeah, exactly, or how will you support someone's decision making if they can no longer communicate with you the way they used to?
Hamish: These are huge and really important questions. And they're the kinds of questions that researchers like Dr Craig Sinclair are asking. Craig is a senior research fellow in the School of Psychology at the University of New South Wales. He also works with Neuroscience Research Australia, known as NeuRA.
Jim: Craig, could you please tell us a bit about your work on supported decision making?
Craig: Supported decision making is a relatively new concept in terms of its legal recognition. But basically, it is a simple idea on the surface. It's the idea that we, like all of us, have help and assistance in making decisions and going about living our lives. So, we all have that experience, I think, of helping people make decisions, but also having that help when we need it. For me, it comes up particularly, you know, when I take my car to the mechanic, you know, I've got no skills in that area. I rely on the help of a qualified person to talk me through the different issues that, you know, I need to think about. But when we think about it in the context of people with cognitive or communication changes or disabilities, this is a way of giving a legal recognition to that process of having the usual help and assistance in making decisions so that, so that those even important life decisions can be recognised at a legal level.
Hamish: This term, I guess, is quite new in the dementia space. For anyone that's listening to this that's living through it themselves or dealing with a family member, it's a term that you suddenly start to hear. Why is it, in your mind, why is it so important that we are talking about this particular idea, this concept?
Craig: We now have a lot of evidence that shows that people living with dementia can continue making decisions, living meaningful lives with the right type of help at different stages of their journey. And so, I think, because there's such a stigma out there, and for many people there has been that stereotype that a diagnosis of a condition like dementia has this, perhaps this legal implication that now a person is less able or unable to make decisions. That can be really impactful on the lives of people affected and it goes a long way to creating that fear around the condition as well.
Hamish: I remember the first conversation I had with Jim when we started making this, you told me about losing your driver's license, which was a decision that was made for you.
Jim: Awful.
Hamish: Which you were very upset about, probably still are a bit.
Jim: Very.
Hamish: So that's an example of where someone with a diagnosis can't make that decision. It's made for them. So, what are we talking about here?
Craig: What we're talking about is, I think, the whole span of decisions that a person might encounter in their life. And it means that it takes us into those messy, confusing places where we're balancing things like a person's autonomy and their rights, but also their safety and the safety of the community around that person as well. So, when we encounter decisions about things like whether a person can continue to drive, that's a decision that is not only, for example, if it were me, it's not only impactful on my life, but it has impacts on the lives of people around me and the community.
Hamish: So, this concept is not about saying, regardless of your diagnosis, you make every decision on your own. This is, this is something different. It's somewhere in between.
Craig: Yeah, yep. At a legal level, for a long time, we have been equating a person's mental ability with their recognition before the law. And that's a big part of this change that has come all the way from the United Nations and the Convention on the Rights of Persons with Disabilities, is to say those two things are actually separate. A person's mental abilities may be, there may be a disability there, or it may be changing over time, but that doesn't necessarily mean that that person is now unrecognised by the law. And through different types of support, people can continue to make decisions about their own lives or to express things in ways that the law can recognise in the future if they're no longer able to communicate or to make those decisions at that time.
Hamish: And here in Australia, that's now part of the new Aged Care Act, isn't it.
Craig: There are now frameworks in place in the new Aged Care Act, which is really exciting, because it's the first, I think, large-scale implementation of a system that will enable supported decision making. Supported decision making, in itself, is much bigger than just some laws. It's every little detail about how we interact with each other and the ways we come to trust another person to share those things that we might need in order to have help on those decisions about our life. But that requires a bit of a legal structure to enable it to happen. For example, a supporter may need access to some information in order to understand what a person needs. And if they were maybe interacting with a bank or a hospital, it's very hard to get access to that information due to privacy laws. At another level, the supporters, we want to make sure that they're acting responsibly and actually in the right spirit of assisting the person. So, the law creates some duties that they have in their role to support the person but not make decisions for them.
Craig: So, the way that could look in practice is, a person who's attending a maybe a GP appointment with somebody helping to translate complex language into language that they know the person would understand. Someone who can take a complex decision and break it down into smaller parts. Someone who can do things like sharing one idea at a time, speaking at the right pace or in the right tone that they know the person responds to. Knowing the good times of day that that person is going to be more able to engage in, perhaps the more complex parts of the decision that they're thinking about. So, it is, it's complex at one level, but it boils down to the sort of simple things that we do with people we know well, that hopefully will help them to express what's important to them in their life.
Hamish: So, I'm just mindful, there's probably a lot of people listening to this that are maybe in the thick of things with a family member. Mum, dad says, “I don't want to leave home, I don't want to go into residential care.” You have to respect that?
Craig: So, I think there's some things to tease out of that, and the first would come back to the actual human rights basis of this. Which is not to say, human rights doesn't say that everyone must now make all their own decisions, and you have to have help, and you have to exhaust yourself every day making every single decision about your life when you're now living with another condition that's making your thinking change. It doesn't say that. What it says is that this support is, people have a right to access this support at an international level. And countries like Australia, who've signed on to this convention, have the commitment to make that access to that support progressively realised. It's always a voluntary process to have support in decision making and you can exercise your autonomy at any time by saying, “No, I don't mind.” “I don't want to make that decision.” “What will be, will be.” So those sorts of protections need to be there that, you know, that this is not actually impinging people in another way, which is creating this expectation that you have to now be superhuman and make every decision. At the level of what we're seeing coming in in the Aged Care Act, it is also not creating a direct expectation that care workers operate outside their scope of practice or spend all their time doing supported decision making instead of achieving the care minutes that that residential care home needs to meet. The resourcing is, it's designed to create a framework for the things that carers are already doing, and to give them the access to be able to do that. But where it differs from what we have known or what we have been used to doing for a long time, is that it doesn't empower those supporters to make decisions for the other person, to come in and impose over the top and say, “This is the decision that will happen.”
Jim: Craig, if our listeners were to take away one idea from this entire conversation, what do you think that would be that they would like to hear?
Craig: I think the most important idea I'd like to leave you with is that a person who's diagnosed with dementia, that in itself is not a proxy for saying that a person can't make decisions about their life or can't express themselves. I think we really need to move beyond that belief and to look at each individual and understand what is that person's decision making abilities, and what are their needs for support. And that people living with dementia can hopefully live more meaningful and engaged lives where they make decisions about their life.
Hamish: That's Dr Craig Sinclair from the University of New South Wales.
Jim: You also heard from Ann and Timothy Pietsch. Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios.
Hamish: You can find more episodes and resources on Dementia Australia's website, dementia.org.au, and make sure you're following Hold the Moment, so you don't miss an episode.
Jim: This show is hosted by me, Jim Rogers.
Hamish: And by me, Hamish Macdonald. The executive producers are Kelly Riordan and Sarah Dabro. The producer is Liam Riordan. Production Manager is Ann Chesterman. Sound Design by Slade Gibson.
Jim: And a special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.
[END OF RECORDED MATERIAL]
About the episode
A dementia diagnosis doesn't take away the right or ability to make decisions. But it does change what support is needed to make them. And that support can shift depending on the decision, the stage of dementia, the time of day and other factors.
A long-time advocate and health professional living with dementia, Ann is fiercely independent and navigates daily decision-making alongside her husband Timothy, who describes himself as "learning on the job".
Dr Craig Sinclair, a Senior Research Fellow at UNSW specialising in supported decision-making, explains how people living with dementia can continue to make meaningful choices with the right support and conditions around them.
Resources and support
Within the Dementia Australia Library the following topic guide is relevant to this episode and may be useful:
National Dementia Helpline 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat, or send an email with whatever is on your mind.
Advance Care Planning Australia
An Australian Government-funded program providing information, tools and support to help people plan for future health and personal care, including documenting their preferences and wishes.
Dementia information and education sessions
Online and in-person sessions from Dementia Australia that build understanding of dementia and provide practical strategies for support and care.
Watch the interview
In this video, we go one on one with our podcast guests.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Ann: There'll be days where I'm wearing different earrings, you know, and Tim will say, "Do you realise, you know, you've got one of these and one of those." And so, I'll, you know, go and change one of the earrings and perhaps be a bit terse. But in actual fact, I'm really pleased that he's doing those things. It's important to respect the other person and to be life affirming.
Jim: Welcome to Hold the Moment. Thank you both so much for coming in today. Ann, you were diagnosed with dementia while you were still working. What was your initial reaction?
Ann: Ah, Jim, my initial reaction was one of relief for having something that actually proved that something was happening, going on because of the issues I was having, struggling with. But also, one of, ‘this isn't the best diagnosis one can have.’ We had a quick diagnosis because I was on top of things with it. I knew about dementia, which was terrific. Knew about Dementia Australia, and that really helped too. Nobody wants a diagnosis of dementia, but honestly, it really helped make the symptoms and things that I had, turn into something that was valid.
Jim: Tim, I know you're so committed to supporting Ann in all of her decision making. What did this look like right after her diagnosis?
Tim: I think I was very affected by it initially. I was very sad at the diagnosis for Ann, but we had to make some very big decisions pretty quickly. Like, well, within two years we sold the house that we were living in. Ann had to give up work, so that meant restructuring our finances and that was a bit to our detriment, but those things had to be done. So, it enabled us to plan for the future in a positive way.
Jim: Yeah, because those decisions are huge aren't they, after that diagnosis? You really got to, not only make big decisions, but then as time moves along, it can affect the smaller decisions in life. And so, how do you find on a day-to-day basis now, how you feel with Ann? Where do you have to, sort of, step in a little bit to help? And where do you have to back off?
Tim: Oh, it's a moving feast, Jim, and I'm sure I don't get it right all the time, and of course, it depends on the particular issue. There are some, of course, very serious issues to do with when we talk about end-of-life issues, or care issues and I'm there to support Ann and make decisions together with her. But from the, for the daily issues, there are times when I need to provide guidance, encouragement, to listen to her, to affirm her, but also to provide some fairly direct advice at times. For instance, Ann used to be a very good cook. She's not interested in cooking anymore, so I do the cooking. I'm not the cook that she was but I have to really encourage her to eat and drink appropriately. She doesn't drink alcohol anymore, but, she's often, that means a bit of coaxing for her to eat.
Jim: Reminding.
Tim: Yeah, exactly, reminding her.
Jim: Do you find as you've progressed over time, that you rely on Tim a lot now for decisions that you used to quickly make? And now you feel a little bit unsure, and you sort of have to trust and lean on Tim?
Ann: I do. People think, you know, I'm fine. You know, there'll be days where I'm wearing different earrings, you know, and Tim will say, "Do you realise, you know, you've got one of these and one of those." And I'll say, "Oh, it's the new trend."
Jim: You have to be the fashion police.
Tim: I've got to be, yes.
Ann: Yes, and he does and so I'll, you know, go and change one of the earrings and perhaps, be a bit terse, but in actual fact, I'm really pleased that he's doing those things and telling me that, you know, "You've, you've got dirty clothes on." I mean, it's, I don't want to have, wear dirty clothes and yet, Tim can help with doing things like that. He does, honestly, he does most of the things during the day and he's such a help and I don't give him credit for the things that he does for me and I love him.
Jim: But it must be very difficult for you Tim with the small things. Even down to what Ann eats, to the financial side of things. How do you sort of work out when to take Ann's input and when you have to take the lead?
Tim: Look, there's no training for this as you know, Jim, it's just, you do it on the job, you learn on the job and you make mistakes. I suppose I've made mistakes at times where I'm too directive to Ann and she doesn't like that. She was a very independent person and had a senior role with the, she was an Advisor to the Health Commission in Victoria, and very competent and I think, look, it is a matter of me listening to Ann and then working out how best to actually help her. But there are small issues, like, if I can mention one issue, it's a tiny bit against Ann. I suppose and I don't mean to be disrespectful because we are respectful but often Ann, when we're going away, like when we come here, Ann will like to pack the morning that we’re flying interstate.
Jim: Yes.
Tim: And sometimes, there just isn't time to do that and she, I say, "Look, we really need to pack those suitcases the night before." And there are lots of excuses why that can't be done because you know, she's going to use her makeup in the morning or...
Jim: Yep.
Tim: …Or whatever, her toiletries and so forth, but, this time and sometimes Ann resists that and it means that I haven't got the time to help her, advise her what clothes to take in the morning because I'm getting myself ready and so forth. This time she did it. She packed the day before and it was so much better and that took a bit of persuasion on my part and I think Ann sort of realised that that was a better, better thing to do.
Jim: That's a really good example and also it makes the whole thing smoother and nobody's getting wound up or irritated.
Tim: Yes.
Jim: Have you noticed more of those things with Ann putting stuff off as she's progressed slightly? Do you think that's one of the changes you've noticed and somewhere where you have to step in a little?
Tim: Yes, I think her time management isn't what it used to be so I have to constantly remind her, "We'll be going in quarter of an hour, we'll be going in 10 minutes, we'll be going in five minutes." Or things like that, because Ann will tend to think she's got more time up her sleeve than she really does have. So, I've got to often remind her about timeframes.
Jim: Are there times when things happen and you have to, for you Tim, have to think, you can't just barge in and make the decision, you've got to tread carefully and sort of win and round so to speak. Are those, can you give us any sort of examples of that?
Tim: Well, there was a big, important decision that needed to be made. We bought a house; we'd been living in the Adelaide Hills for 11 years. We brought up our four sons there and then we moved to what we thought would be our sort of semi-retirement house. It was a lovely new house, two-story house on a park. Lovely environment overlooking trees because the open space living was upstairs. Within six months of us moving in, Ann was diagnosed with dementia and I realised that we couldn't stay there for too long. We stayed for about another two and a half years but we had seen a retirement apartment that would've, that I knew would suit us very well and I had to persuade Ann that we would need to move out of our, this, our lovely house in Glen Osmond into this apartment within a couple of years, and that took a reasonable amount of persuasion.
Jim: Mm.
Tim: Going back and seeing this place a couple of times and Ann was still a bit reluctant because I think it reminded her of some of the visits that she had made when she was working for people who lived with dementia.
Jim: Yeah.
Tim: And visiting them in their homes. Well, it's turned out to be an excellent move. That was 11 years ago, and we, in this retirement village. Only 33 apartments, and we have…
Jim: Amazing.
Tim: … very good friends there and Ann is very, likes living there a lot.
Ann: I'll even say that it was a good decision.
Tim: So, I had to...
Ann: But I didn't want to go.
Jim: I mean, it's a big adjustment, right?
Ann: Yeah, and to listen to Tim and to, to trust him.
Jim: Yeah.
Ann: Because there's a lot of trust there.
Jim: Yeah.
Ann: And, I thought, no...
Jim: It's letting go of a piece of you...
Ann: It is.
Jim: ... in a way.
Ann: It is.
Jim: That career, then your home. It is like, it's all of those things have to be taken...
Ann: All happened at once.
Jim: Yeah.
Ann: At once, and I guess because I was such an independent person, I didn't like somebody doing those things but it's the best decision we ever made.
Tim: Yes, well, yeah.
Jim: I mean, how do you, both of you actually, communicate when it comes to decision making? Do you have a strategy? Do you sit down and discuss it? Or, how do you sort of go about some of these decisions now?
Ann: A lot of it's really just trusting that Tim has my best interests at heart and sometimes there'll be times where I think, "Oh, I'm not sure about that." But, it works out. And you're usually right.
Jim: He's usually on the money.
Ann: He's, yes, he is, and I've trained him well.
Tim: We, we'll go out for a coffee and we'll talk, we'll talk through an issue. We don't labour over issues terribly much. We tend to sort of get on with it, you know. Talk about something or other and then get on with it, implement it but I think when you're, when you're a partnership and you're on an equal footing without any, with, you know, pre-diagnosis, like Ann has, it's all give and take all the time. You're giving and taking and respecting each other's point of view. When a person with, is diagnosed with dementia, it's there, there's a shift in the dynamic between both of us, between the two of us. I think where it goes more to being, you know, the carer and the person who's being supported.
Jim: And that's a big adjustment in itself, isn't it?
Tim: Yes, it is.
Jim: Especially if somebody's got quite a powerful personality, a big career like Ann, and you know, there's a lot of things that, that are in that balancing act.
Tim: Indeed, yeah, indeed.
Jim: Is there, is there any sort of supports that you lean on for decision making? Do you find that you do it just yourself, or do you outsource some help from supports anywhere?
Tim: We do have close friends, in particular, two friends who are, we divulge quite a lot with them and we get advice from them and pass things across them from time-to-time and don't always agree what they have to say.
Jim: But it's always good. Two heads are better than one, right?
Ann: And sometimes it's through talking with other people that you actually come to the decision itself and it might be that I'm not really keen on the way Tim's handling something, but by the time we've had a decent open discussion with other people, I'll come around and think, "yes" you know, that was the right support and the right way of doing things.
Jim: So, Tim, you're careful not to just barge in and take over. If you can help it, but I imagine there's times when you do need to do that?
Jim: Well, I think, I think back to, I was a manager when I, before I retired work from, with Department of Premier and Cabinet. I managed IT staff, but I think there's an analogy in situational leadership. So, leadership can vary. The type of leadership that you give to a group, can vary from being very collaborative and seeking a, seeking a sort of a consensus about which way to go, to being very directive. And I give the example of if there's a fire in the building, you don't ask your team members…
Jim: You run.
Tim: "Now, how do you think we should approach this? And where do, what do you think, who would like to, you know, do this?” and so forth. You just put on your hat, which says, you know, "I'm the warden," and you get everybody out of that building and of course, supported decision-making is a continuum between that and the very collaborative and you know, sort of seeking advice and listening. And there have been times when I've said, when I've had to make decisions for Ann without too much consultation, particularly with certain things that can be safety issues. Like, at one stage, her shaver for her legs, she'd leave on the shower room floor and the shower, shower cubicle floor and I'd say, "No."
Jim: That's going to stop.
Tim: They're not to be, you do not do that for your own safety and my safety. Things like that.
Jim: Yeah.
Tim: So, it was a moving, it's a moving feast.
Jim: Something else I want you to ask you, Ann, is you presented, I know this from my notes that you presented at conferences about support and supportive decision making. It's a really important topic for you because I know you understand a lot about it. What do you want other people living with dementia to understand about decision making? What's important for them on this journey?
Ann: I think really, it's important that you've got to remain humble and you've got to have respect for your partner or your family member who is helping you along this way, and that you're not going to be capable of doing all the things you thought you could do. And just be honest and take that advice and take the help that you can get and I know that'll go on and there'll be times where Tim is doing more for me, and making more decisions and it is hard for me, but it's hard for Tim too because he knows it's hard for me.
Jim: Absolutely.
Jim: And it's really important though because you need that help otherwise, you're just living in a muddled mess, trying to make decisions, trying to get through the day and you can be overloaded with these things.
Jim: Yeah.
Jim: And you know what it's like if you get anxious, you can't make any decisions and I think that it's for somebody living with dementia, giving up some of those aspects is really difficult.
Jim: Big milestones, aren't they?
Ann: It's a real challenge but, and a lot of people don't have the beauty of having somebody like Tim.
Jim: No.
Ann: And some of them are by themselves and they might have external help making decisions, helping them and you just hope like mad that they, other people, the input that they have has actually got the person's...
Jim: Their best interests.
Ann: Yeah, and that they really care about that person as an individual, with their own individual needs and things and rights. You know, I've got the right to say, "No, I don't want that," but I've also, you know, know that Tim is really…
Jim: Has your, your best interest at heart.
Ann: Yeah, I trust him.
Jim: I suppose on a final note, really, in summary, Tim, if I could ask you for one piece of advice to any other couple, or people that might be listening to this podcast, are on this journey of supported decision-making, which is ever changing, what would your final piece of advice be really? What's so important?
Tim: It's important to respect the other person. To listen to them, to affirm them. To be encouraging, at times, prompt them, you know, what might be good advice. But on the whole, just treating them as they have the right, of course, to be treated with respect and with love in our case, and to be life affirming.
Jim: You couldn't put it any better. So, all I can say is thank you both so much for being so open and sharing such a great insight into this difficult journey and I just hope you both have lots of fun ahead. So, thanks for coming in.
Ann: No, thank you very much for having us.
Tim: Thank you, Jim.
Ann: Yes, thanks Jim.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
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[END OF RECORDED MATERIAL]
Ask Us Anything
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello. My name is Kevyn. I am a First Nations advocate with Dementia Australia. These lands in which we are meeting are many countries filled with languages similar and different. For more than 50,000 years, we have come together to trade knowledge, to learn and to teach. Today, we join to keep up that tradition. So with that in mind, we now pay our respects to the traditional owners, to elders past and present, to those first nations, people joining us here today. Welcome and thank you.
Jim: Making decisions is part of staying independent, but dementia can really make that a challenge at times. Supported decision making can help people to stay in control with the right guidance and respect. Hi, I'm Jim Rogers, and this is hold the moment. It's Dementia Australia's award winning podcast, which gives you real stories, insights and support when you're dealing with dementia. On our Ask Me Anything episodes you send us the questions you'd like answered about living well with dementia. So we have a fantastic question from Jazz in Canberra.
Jazz: Hey, Jim. I'm Jazz from Canberra, and my dad is living with dementia, but he doesn't want any more medical appointments. They're too long and very overwhelming for us. How do we honor his wishes without putting him at risk? Thank you.
Jim: Here is Rose Capp, policy advisor at Dementia Australia and author of Demystifying Dementia.
Rose: Thanks for that question Jazz. I can understand why your dad might feel like that. Clinics and doctors, surgeries and places like that, they're pretty busy, and they can be very overwhelming spaces, and also it's often a lot of information to take in during an appointment. It's really important to respect your dad's wishes and his perspectives on what that might feel like to go through those lengthy appointments, but it's also really important to encourage him to attend. People living with dementia have very different experiences of the condition, and their symptoms can be variable, and the changes can be very variable, so seeing medical practitioners and getting that kind of assessment and support on an ongoing manner, it's really important part of supporting your dad's wellbeing. There are a few practical suggestions that I might make that might help him cope with the appointments and for them to feel a little less tiring and overwhelming, one of the things you could do is actually pair the appointment with something that's really enjoyable for him, so maybe going out for a cup of coffee or a meal before or after the appointment, or a walk to a favorite park or a visit to a family member, and link those things with the appointment. So the day is not all about the medical appointment. Another really good tip I got from a carer who I was talking to a while ago was to ring ahead and just see whether the person is running to time. Because this carer was saying often the worst part of the appointment is actually waiting around in the room, and that can really add to the stress and the fatigue associated with appointments. So that's a really good tip, I think. The other thing is, in terms of dealing with the information, it can be very detailed, and that sort of feeling of information overload, I think, is familiar to a lot of people in medical appointments. So what I encourage you to do is make sure that the person that you're seeing is explaining the information to your dad and to you in a way that's really accessible and meaningful, and you might actually have to get the health professional to paraphrase or explain again the sort of information he or she is giving you and make sure that it's clear to your father. Another good tip is too my GP told me this a while ago, is never to go away without a piece of paper in your hand. She said it's really helpful for a patient to have something to look at afterwards, and that helps reinforce the information. And I think that's a really good idea too. So if there's a lot of information being conveyed in that appointment, ask for some information and hard copy on a piece of paper, and it means that you and your dad can follow up and have a discussion at a later time when he's feeling up to thinking about that information and those decisions. And finally, where possible, when this isn't always possible, try and space those appointments out so your dad doesn't feel like his week and the month is constantly taking up with attending medical appointments.
Jim: Our next question about supported decision making comes from Carly.
Carly: Hey, I'm Carly from Bendigo, and I was wondering while supported decision making sounds great in theory. Be the reality of supporting someone with dementia, particularly advanced dementia, makes it seem just so hard. How do you know what to do when there's so much on your plate?
Rose: We hear a lot about supported decision making these days, for instance, it's quite a big part of the New Age Care Act, and it can feel like a bit of a buzz word, I think Carly. So this is a really good question, and it's a really good opportunity to explore how we actually put that into practice. So the simplest explanation is that supported decision making is really an approach that supports the person living with dementia to be involved in decisions about their life for as long as possible, and that can be all sorts of decisions, from where they might want to live, how they manage their finances, to things like medical treatment preferences. I would say here that the key to this process really is good, clear communication. So you really want to make sure if you're the person supporting someone living with dementia, that you're having an informed discussion, so that you are helping the person to understand what it is they're making a decision about and the consequences of that decision. You also want to make sure that their decision is documented clearly. Now a critical point here is that information must be provided in a way that's really accessible and also appropriate for the person. So someone in the early stages of dementia might be very comfortable with a typical sort of plain text document, but over time, that person's cognition might change. They might have increasing difficulty just in reading a dense piece of text. So you might look at other options, like what's called a plain English version of a document, it's simplified, or you might need to use visual aids, or you might even provide something in a short video. The point is to get that information across in a way that the person understands, and then they can make a clear decision about what they want. I often talk to people too about setting the scene for a good discussion and an effective process for decision making. So we all know how the physical environment can have an impact on us. If it's too noisy, it's really hard to concentrate, and that's even more so for someone living with dementia, often sensory input is really hard to filter out, so it's really important that you find a comfortable space, somewhere that's quiet, that feels comfortable for the person living with dementia, try and minimize other distractions like excessive noise or light or anything else that might have an impact on the discussion you're having with the person, and also their ability to actually concentrate listen to the incoming information and make a good decision. Now, having said all that, it's important to acknowledge that this process isn't always straightforward. It can be really complicated. You might have someone who's living with moderate to advanced dementia, and they might be considering wanting to continue driving, whereas that might be a risk, not only to them, but perhaps to other people. So it's important here to think about being flexible and responsive, and also that the decision making process, it may not always achieve outcomes. You may not be able to make a decision with the person, and ultimately, there might be situations where you as a support person or a supporter, might actually have to make the decision for the person. But what we say here in that process is that you will know that person's wishes and preference, and so you'll if you have to make a decision for them, you will be doing that on a solid sort of basis, knowing what they would want. And I think a final important point here is to say that you might have one discussion, but you also might need to have a series of discussions. So don't sort of feel like you've got to get that decision made in one discussion. It might be really quite a complex or a substantive issue, thinking about medical treatment, for example, so be prepared to have more than one discussion. The other point is that we all change our minds at different times depending on our priorities and our circumstances, so you might also want to revise or revisit that decision at some stage.
Jim: If you've got a question, you can also call the free National Dementia Helpline on 1800 100 500. Dementia Australia's trained advisors are available 24 hours a day, every day of the year, and look out for more episodes of hold the moment. This episode was produced by Deadset Studios for Dementia Australia.
[END OF RECORDED MATERIAL]
You asked, we answered
This episode answers questions about how to manage overwhelming medical appointments, and put supported decision making into practice.
Rose, a Policy Advisor at Dementia Australia, offers practical and compassionate strategies.
About the podcast
Hold the Moment is an award-winning podcast from Dementia Australia full of real stories about life after a dementia diagnosis.
Season three dives into the topics that can be hardest to talk about, with compassion, practicality and a unique sense of hope.
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