Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Family relationships and dementia]
Jane: Welcome to our Dementia Australia Webinar Series. I'm delighted to be able to present to you today. My name is Jane Smith. I'm the Family Clinician at Dementia Australia, and I work with families around relationships and communication when Dementia comes into their lives. I'd really like to acknowledge the families who teach me in the work that I do, and to acknowledge their bravery in sharing their experiences. And in today's seminars, really just to say to you that you are the experts in your lives, and that's very much at the root of how we form our relationships, and how we communicate when difficult things come to us. Before we go any further, of course I would like to acknowledge the traditional owners of the land on which we are all meeting today, and acknowledge Elders both past, present, and emerging.
So, there will be few things that we're going to cover, and I guess it will be a little bit of a gallop through, but I hope that there's something in here that will resonate for you and will allow you to think, "Actually, maybe this is something I could reach out for support with". And when we're talking about family, of course, the most important thing is the family definition is anyone who you regard as family as it is important to you. In my work, often, I might include pets, and so that those other people that surround us are as valid as anyone else.
What we're going to look at is the family life cycle, how we think that our life's going to pan out, our coping strategies of family relationships and communication, as I've said. Adapting to the changes that occur, which of course, they have. Grief and loss, which is a really large part of what you would be experiencing. Supporting children and young people, particularly talking to those of you who might have a younger onset dementia, and other carers, and the supports that are available. And of course, again, there'll be nods to possibilities, but I hope that there is something that is useful for you.
So, this is really how we think it's going to go. We have our childhood, and our families grow, or we grow ourselves and we merge as young adults into the world, and we might meet somebody, and join another family or another person in that way, and we might raise children, or we might be raising children that are in part of our extended family. We then are watching those children or ourselves launch off, and moving on into a midlife, then we get to middle-age, and there might be grandchildren arriving or other things that are happening, which are more congruent with that age and stage, and then a later middle age where I might be thinking, "Okay, yeah, I've kind of got there, what are the things that we would like to do, or I would like to do, that are important to me?” And then, of course, nearing the end of life.
And when Dementia comes along, of course, it disrupts this in many, many ways, and we really have this sort of feeling, which is, "It wasn't meant to be like this! This is not what I was expecting," and I think that's a really big take home from today is the impact is really huge, and you don't need me to tell you that, but it is just a real acknowledgement. Sometimes, I think, “We can keep going, I must keep going, whatever, that's how I've been taught to cope, whatever,” but it is acknowledging that when we come into this life, we do tend to have this idea of how things should be, and it's that acknowledgement of, "Yeah, this is a big thing that has happened," and maybe, you're at a stage in your life when there's some dreams were about to be realised, or maybe it was that you were about to watch a child launch off into something, maybe you've just started a new business. There are many, many things that it can disrupt.
So, the roles change, don't they? A person living with Dementia, maybe some you watching where you've been the income earner, you've been the parent that, maybe, has done majority of parenting, or you've been the one that, perhaps, has made the decisions around finances. Perhaps you've cared for other people in your life, or you organise your social life, you did the shopping and cooking, and you are a confidant. Maybe some of those things are changing as changes in your brain are occurring, and then for the family members, of course, it's kind of like, “Whoa, all these things that I had expectations around my partner doing, or this other person in my life doing, that is now changing too. How are we going to cope with a loss of income?” These role changes have immense impacts on your relationships as well. They're not small things as you well know. And wherever you are in your life, you might be much, much further down the road in terms of your relationship, 50 years of marriage or whatever, but again, we are very much embedded in those roles, so the subtle changes and the concrete changes.
And when we think about families navigating change, we do need to think about the immediate needs of the present, and they overlap, drawing upon the prior generational experience of coping with illness and loss, and there's usually a story about this in families. How is it regarded? When I was young, I was always having to look after my mother who was unwell, or we were always sent off to school, we weren't allowed to be sick. It's kind of like how is illness seen in our family, and are we allowed to acknowledge it or dismiss it? And then, of course, it is, well, how on earth are we now going to negotiate this? We're charting a course for the future. Everyone copes differently. Everyone reacts differently. It is informed by age and stage, generation, culture, of course, and a sense of purpose – do I keep soldiering on? Or what kind of future does this bring to us? And that idea of uncertainty is very, very potent because, as human beings, we are designed, we're meaning making systems. So, this idea of the future that I thought I had, and that feeling of uncertainty, and how do I, as a person, deal with that, these are just things to have in your mind because these are the things that can become so unsettling.
And again, there's more type of generalising when illness hits, when we have a short-term illness. Often, you're into hospital, medical staff do the things, there's an adjustment to change, you come home with a plaster on your leg, and then off you go again into life, and I'm minimising that; but with Dementia, as we know, this is a much, much bigger impact, and often, for many of you, you might have been spending a long time trying to find out what an earth that it was happening for yourself, or your partner, or a person in your family, what is happening. So sometimes, of course, that diagnosis can be a relief, but it is these things where families, as you go down the track, the family or whoever you regard as family, is providing the bulk of the care, and the stress levels, of course, can be very constant, and what that can create is a lower threshold for heightened stress – so, something suddenly goes wrong, or more wrong, and "Oh my gosh, how can I cope with that?" I'm wanting to really normalise this, and acknowledge how difficult a lot of these things are. Of course, we're going to be thinking about our strengths and how we usually cope, but I want to lay it on the table, this is hard stuff, increasing strain, and this constant sense of uncertainty that dementia very particularly brings. How can my family do this?
And, of course, there's how we relate to each other in terms of our emotional style, and where we are in our life stage; how we function: are we an emotional family? Do we gather together? Do we tend to cut off when things get difficult? Are belief and value sets really important? And again, as I have mentioned before, this prior generational history – so all families do this stuff. Illness then comes along and it has its own needs, doesn't it? It's just the emotional needs of living with Dementia. How the Dementia is going to play out and that is a concern for everybody in the family and how that will affect them. The practical demands, the prognosis, that is always a big question, and the stigma that surrounds it.
Many people, as all of you would know, might decide that they don't want to be telling people about what is happening for them because of society's stigma against Dementia, which we’re working really hard to change. And the historical data of their illness as well which, again, is how has this been seen over time? So, you're battling many things, this is the enormity of what has happened for you, and your coping styles, and how you are relating to the illness as well as each other. Am I allowed to be sick? Am I allowed to ask for help? What are the barriers that might be preventing us for looking for more support? So, these are really good things to think about, and again, it is in my life stage where I sort of thought that we were, has the timing of this diagnosis affected how I'm feeling about it? It's a quite good reflective question because it might help you view how you are responding through the lens of that, the timing of this, and the history of how we respond to illness. It is important around how you relate to each other, and how you communicate.
And of course, I don't need to tell you the impact of the changes of becoming a carer or being the person with Dementia, needing to ask for help with the responsibilities around work or study, family, how to keep the house ticking over, financial responsibility, and the feelings, of course, of often resentment and anger, the guilt that can come up, frustration, sometimes more love, the feelings of loss, anxiety, and grief. The impact on intimacy as well, and how that changes when we become in more of a caring role, and how children might experience the parent that's usually more in charge, for example, or the disciplinarian, that changing as well, or just being less available as they're coping with the transition. And relationships might become stronger, of course, or become more compromised. We can get stuck here and, I guess, today is about acknowledging these things and saying you can get help.
So, the reactions to the change, and again, human beings are not good at change in the main; devastation, optimism, now we know what it is, some relief. Again, let's get on with things. There’s anxiety, some distress. Sometimes, people have a feeling of despair or entrapment, "I'm stuck here, I'm stuck in this kind of role." The behaviour's changing, "I'm losing that person," and that active mourning that we talk about, grief being very, very present in a daily sense, and sometimes, that not being acknowledged by other people around you. Knowing these things for yourself will help you in your relationship, so you are able to say to yourself, "It's okay, I'm allowed to feel this today because I'm grieving, and I'm grieving for some very valid reasons. If I can acknowledge that, then maybe I can put that aside and then think how am I going to connect with this person? How am I going to have continued relationship and to communicate with this person?"
And to follow on from that, it is acknowledge your feelings. And, in this, as other people have said in these webinars, there is no right or wrong, or you'll know when it's really not okay and that you're feeling undone in some way. That's when I'd really be encouraging you to take the space to think, "How am I at the moment when I'm feeling so stressed? And is the stress, itself, causing me to communicate in ways which are unhelpful, not only for the person living with Dementia, possibly for the rest of the family”, but really, very much about yourself, being kind to yourself, but taking space.
So, not validating it when you're behaving or communicating in ways which are probably not okay, it's just recognising it. It's okay, you can get it wrong, but maybe, it is about a breath of space – who am I communicating with? What do I want to get from this communication? What was my relationship with this person before? Can it still be the same? Can I recognise that they are also trying to connect themselves? How do our family usually cope with these things, and maybe some of us are better at pulling together, and other people really, really need the space to work out what's happening for themselves.
The one other thing, just important to say here, is this learning about the dementia, I think, is a really important thing so that everybody possible can have the same information – and you do this together – the same information, at the same time, and ask the questions very transparently. Providing, obviously, that is done in a really sensitive way if the person with Dementia is there as well. So that kind of skilling up can be a really helpful thing, and again, what are our strengths, but what are our stretches? Or my sister's great at this, and my brother's really good at that, that's stuff I'm not so good at but I know what I can do. So, it's recognising that what we tend to do, often, is thinking that somebody is not stepping up, perhaps they're stepping up in the way that makes most sense for them, and in a way that can make the most sense for the person living with Dementia.
These changes in relationships can be really strong, and is there any wonder that things will change given all of the things that are happening, where you are in your life, the impact of the diagnosis, your own grief, the grief of other people around you, and remembering that we are always in these kind of states at different times. You might have one person in the family who's coping really well for whatever reason, and another who is not. Or one person who can manage a certain component of this quite well, information, education, all those things, but really can't face talking a whole lot more about the emotional impact on them. And all of those things are fine and valid. You are all living with Dementia in some way, whether you are the person that's there every single day, 24 hours a day, but also, in the research around secondary carers who aren't there all the time, the psychological impact can be enormous. So again, in acknowledging that Dementia kind of moves in, and it becomes another component with which you have to relate. It's not easy.
So, the question really is how can we remain connected, and probably one of the most important things is, again, as I've mentioned before, is remaining connected to yourself – who am I in this? Where am I in this? How do I want to be communicating a way that is congruent to me? And then, when you can do that, and feel more settled, and take that breath, is seeing the connections – so it could be it feels so overwhelming. You're thinking, “My partner can no longer parent in a way that they used to,” as an example, but actually, when you really can take that breath for a moment, and I'm not minimising how hard this is, is the way that you observe, with some behaviours, that they're still attempting to parent. That maybe, they have been to the shops and bought 14 loaves of bread in the last two days, but that is a way of I'm still wanting to be contributing in the way that I always have done, that somebody becomes anxious at a certain time of day, which is around school pickup time. And also, that there may well be some ways that your partner or you might be attempting to connect, which is feeling different, but it's kind of remaining awake. So, the more still you can be with yourself, it's just keeping your eyes out for how is this person trying to connect, and how they're still trying to connect to themselves as well. And connection is part of the human condition, and is the thing, we really think about it, that makes us feel sort of human and alive.
The other thing just to mention here is understanding the person, through their family of origin and their culture, which again, is something that I know is very much just part of how you live, but it's just really remembering what was important to them as they grew up, for example? What language might they have been speaking? What was it about the way that they lived that created those beliefs and values, and maybe, that we have to connect with those as well, so recognising how they belong, how you belong, and what binds you together, as opposed to what is busting you apart.
One of the things, I think, is really important to talk about, also for those of you who might be watching, who have children and young people in your lives, either as if you're grandparents, but also as parents, or somebody has younger onset Dementia. This idea, of course, of a role reversal of a child needing to step up in a more parentified role. And of course, there can be embarrassment about what has happened to their parent. They might be thinking, "I don't want my friends to come around." What might be the ways that they can retain respect towards their parent, who might be behaving in ways which are really difficult for them to manage, and also, how do we retain respect for the child or young person to have some boundaries around that? As much as we want to be inclusive, how real is that for that young person?
Of course, many young people and children, and all of us, feel guilt about how we feel about change, and how we feel about the changes in relationships. And, of course, for young people as well, what a dementia diagnosis might impact is that delay in being able to launch. So, I was going to be going to go away to study, I was going to travel, and now that I can't do that, what is the impact of that. And just, again, being awake to how big an impact these things can be, and what can, we, as a family, do to acknowledge that. And, of course, many young people might withdraw; and others, of course, the opposite of that, might really adapt to this caring role, find a niche for themselves, and blossom into it. Many young people have spoken about that.
How can families cope and connect? And again, I feel like, at this, I'm just reiterating much of this, because it is really going back to basics, and it is these things that you might listen to this, and think, "Yeah, well of course, some of this stuff is hard to do when we're in the hurley burley of life, and we are also in that place of great change, and we're feeling this grief." So it is, how can my family acknowledge feelings? Perhaps we've always been really terrible about that, is there a way which is not about everybody sobbing around the table, but it is just to kind of check in, do we have a way that we're collectively sitting together? Do we need to sit around and do a jigsaw together? Maybe do a bit of talking? When we're driving, of course, is often a way for that many of us can connect better, because we're not looking at the person sitting next to us, and I'm wondering how it is for you, just gently asking these feelings, not having the answers, just allowing it.
No feelings are right or wrong, and because one feels one thing, and somebody else feels something else, that is just us. That is how we are. It is how we feel about managing our own feelings, and how we understand what is happening around us. Remember the ways that you've successfully coped before, I think that's a really, really important one as well, that there will be things that have come up in the family, either historically or in your time together, where you've actually got through something really difficult before, and you can again. And, again, remembering stories of the family where hardship has been overcome, and some of these might be historical, and kind of good to really think about thinking, "Wow, yeah, I've always thought that my grandparent had this great resilience, but you know what? I do too, and I am managing this really hard situation.
Play together, easy to say and hard to do when you've got teenagers maybe, but how can you have fun together? Or as an older couple, what can we sit together and still connect with? Is it you doing a painting together? Is it going outside and digging a hole in the garden? What else can we do? Jumping on the trampoline or any of these things, just small, small connections. Laugh together and cry together. I think this notion that I mustn't show my sadness, people pick it up, children pick it up, the person living with dementia will pick it up, just this sense of something, this sadness, unexpressed. It is okay to cry. It's okay to say, "This is hard," because it is hard, and it is a way of sharing, and connecting, and relationships become stronger. And again, as I alluded to you earlier on, that shared understanding of the diagnosis and symptoms is really, really important, and often, this might have happened to you where there's a mismatch between what people believe in the family. So, if there is a way of having a shared understanding that can really prevent these disagreements of, "Oh no, dad's okay, he's fine," whereas another daughter might say, " No, something is really not okay here." So, a way of coming together and sharing that together, and of course, Dementia Australia is very well positioned to gather you together so that you can have this understanding.
To go through it all again, effective communication in families. We're listening to each other, we're really hearing what somebody is saying, and not minimising it or denying it. Everybody feels something different depending on age, stage. So we validate those things, "Wow, yeah, that's hard for you. That is hard. I understand what you're saying to me," that you're respectful in that kind of way, and then it can also be, "I understand it's hard for you, it's not how I experience it," and then, you might explain how you experience it, and that those two things can be held at the same time.
Making that time to talk and listen, I've got to talk and listen, but listen and talk would be the way around I'd have it. So it's slowing it down. No put downs. I am putting that there because I do work with a lot of siblings, adult siblings, who are really, really struggling around the care for the older parents. And in that grief, often, there's that feeling of needing to dismiss, or deny, or put down maybe one of their siblings. So, I guess it's just being a weight to that, what is that about for me? I'm feeling so hurt, I'm feeling so sad, am I going to just breathe for a moment, and just listen to what they're saying? All behaviour has meaning, and really understanding that.
The other thing, of course, really importantly of that, is listening for the positives because they're there. What are our strengths? What might we struggle with? And these are really valid things. The grief of the whole family. We're just to nod to that, and we've talked about this already, but a loss of interest in usual activities, changes in ability to study or work, some isolation, changes in appetite and sleep patterns. So, acting out for young people, aggression and risk taking, those things might be happening. Grief is real in dementia.
Responding to children and young people, again, it's very much as we've already said, it's that honesty is really important. Many young people say, "I knew something was up, but nobody was telling me what was happening." So that research has shown that really strongly, let them know what is happening, but they might not want to take it on, and that is okay too. So it's just allocating quality time to them, that's a really hard thing to do as well, with everything that's going on, but just that acknowledgement of I want to spend some really good time with you but I can't right now. Involve them in planning decisions. They are part of the family too, and acknowledge their contributions, and have fun when you can. Look after yourself, model self-care, and you need time out too. Big, big take home message, looking after yourself, because again, with children and young people, they would often say, "I wish that my well parent had done that," but also whoever, wherever you are in your caring journey, looking after yourself is the primary thing and will mean that you can provide better care, as you know.
So really, just getting to it that families are complicated. We are impacted by so many things that come around us. There's not a clean and easy way to respond to dementia. The diagnosis of dementia impacts the whole family significantly, or certainly can, in some good ways, as well as some very significant ways which are really disruptive. Children are impacted by Dementia too, and there is support, and I think that that is one that I really, really want to say loud and clear. Sometimes, it can be around family stuff, “too hard, I don't want to talk about how difficult my family is.” We can, at Dementia Australia, help you with these relationship and communication issues. We have excellent specialist dementia support who can help you get on that same page around what is happening. We have some excellent counsellors and Dementia Australia is a family-informed organisation, we want to understand.
You can ring the National Dementia Helpline as it is on the screen, on 1800 100 500. And on the registration page for this, there are some other resources there. I'd particularly like to just acknowledge family relationship support for carers, give some free access to counselling. So that link is there. Family Relationships Online is a Victorian Government program, where you can access both by telephone and online support around family issues, not Dementia-specific, we can do that stuff, but around the complexities that can occur. And, of course, you've got Relationships Australia as well but all of those things can be accessed on the registration page. Thank you so much for joining today, it's been really good to be able to outline some of these things, and I hope that that's been helpful for you. Take care.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
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