For family, friends and carers
Nearly 1.6 million Australians are involved in the care of someone living with dementia. It can be a rewarding role, but it can also come with big changes to your life, and there are good days and hard days. We have information, advice and support specifically designed for you and your needs.
If someone close to you receives a diagnosis of dementia, you might find yourself in the role of carer, either by choice or necessity.
Carers often report feeling that, when the attention is understandably on someone with a medical condition, it can sometimes feel there’s no time for your needs, or that it’s not right to spend time on yourself.
But your needs are important. Not just because getting care for yourself will help you better care for your loved one, but because you’re still a person with real needs who deserves to have them met.
Throughout this website, we use the term 'carer' to refer to people who are close to someone who lives with dementia, and provide some form of care to them in a non-professional capacity. You might be a partner, a family member, a friend, or anyone else who cares.
Not everyone uses the term 'carer' to describe themselves. Some people describe themselves as a 'caregiver', a 'loved one' or any number of other terms.
There's no single word that covers the full experience of everyone who cares for someone with dementia. We use 'carer', but if you describe yourself another way, Dementia Australia still recognises your experience and we're still here for you.
Transcript
[Beginning of recorded material]
[Title Card: What have your learnt from dementia?]
Interviewer: Now, how many interviews have you done before?
Speaker 1: None.
Interviewer: Beautiful.
Speaker 2: Hard to know where to put her hands, like…
Speaker 3: What was the question?
Speaker 4: What have I learnt about myself?
Speaker 5: I’ve learnt that it’s out there more than you realise.
Speaker 6: That it can happen to anybody.
Speaker 5: I’ve learnt that there’s lots of different types of dementia.
Speaker 7: Alzheimer’s is not like screaming, ahhh!
Speaker 8: Live with dementia, there’s all sorts of things you can have that is good.
Speaker 1: And have a lot of fun, actually, at times.
Speaker 4: I go to a church and I just enjoy being with all those people because they look after me and they care for me.
Speaker 1: And we’re all enjoying ourselves and having a great time, and I said to him, to the guy next to me and said, “You know, I’m starting to feel sorry for the people that haven’t got dementia.”
Speaker 9: Having David, my husband, with Alzheimer’s and being diagnosed, the two and a half years ago, my role changed.
Speaker 5: I thought I would cope with this better but I hadn’t factored in the 24 hours a day, and that’s challenging.
Speaker 2: I’ve learnt that I’m very short on patience sometimes.
Speaker 10: Answer the same question over and over again because it’s the first time they’ve asked it in their head.
Speaker 3: Misplacing things, forget to do things. Honestly, it’s the Alzheimer’s.
Speaker 10: I’m trying to put myself in his position and I wouldn’t want to be there.
Speaker 6: I’ve been surprised at my feelings of wanting to care for him, and standing up for him, and I feel a wee bit like a mother tiger with her cubs.
Speaker 11: That I can do a lot more than I thought I could, that I cry a lot. Sorry.
Speaker 9: You take on everything as a carer, 24 hours a day.
Speaker 2: Because your days have changed. Your life’s changed.
Speaker 6: Oh, I don’t know whether I like it. Yes, I’m glad I can do it. Otherwise, I’d just be walking away from him.
Speaker 10: Just learning how to live with this, deal with it. It’s going to be a long road.
Speaker 2: He may be different, but he’s still the same person.
Speaker 11: That they’re normal people. They have feelings. It’s not their fault that they can’t remember.
Speaker 2: And if you take the time to chat, and take the moment to give him the opportunity to find the words, you’ll see that he’s still in there.
Speaker 5: For him, he amazes me because he doesn’t seem to be angry or frustrated by it.
Speaker 1: Probably learnt to cope a bit better and not worry about things too much.
Speaker 10: I just want to make it as easy as possible for him to get through this.
Speaker 6: Look forward rather than look backward.
Speaker 10: I don’t know if I can, but I’ll give it my best shot.
Speaker 4: I just enjoy life and always have.
[Title card: Dementia Australia]
[Title card: National Dementia Helpline 1800 100 500. For language assistance call 131 450]
[Title card: Visit dementia.org.au]
[END of recorded material]
Information, advice and support for carers
Dementia Australia is here for carers.
We have information, advice and support services designed especially for you as a carer, and you as a person with needs independent of your caring role.
Here is a list of ways you can get the support you need, from us and other services.
- The National Dementia Helpline
Call 1800 100 500 for free and confidential expert information, advice and support, 24 hours a day, seven days a week, 365 days a year.
https://www.dementia.org.au/get-support/national-dementia-helpline - Counselling
Dementia Australia offers free, confidential, professional counselling for individuals, families, couples and professional carers at all stages of a dementia journey.
https://www.dementia.org.au/get-support/counselling - Family engagement counselling for younger onset dementia
Dementia Australia’s free counselling service for families where someone lives with younger onset dementia.
https://www.dementia.org.au/get-support/family-engagement-counselling-younger-onset-dementia - Connecting Peers
Connecting Peers, our one-to-one peer support program, connects people living with dementia and carers with peer leaders who’ve been through a similar experience.
https://www.dementia.org.au/get-support/connecting-peers
- Carer Gateway
A national online and phone service that provides practical information and helps carers connect to local support services.
https://www.carergateway.gov.au/ - Carers Australia
The National peak body representing Australia’s carers, advocating on behalf of Australia’s carers to influence policies and services at a national level.
http://www.carersaustralia.com.au/ - Dementia Behaviour Management Advisory Services
When changed behaviours start to impact the care of a person living with dementia, or their carers, Dementia Support Australia can help with support, clinical advice and more.
https://www.dementia.com.au/dbmas
Care for families, friends and carers
Self-care for carersIt’s okay to spend time taking care of yourself. Not only because you’ll be better able to care for your loved one, but just because you’re a person who deserves care.
https://www.dementia.org.au/living-dementia/caring-someone-dementia/self-care-carers- Taking care of a carer
With a bit of new knowledge, you can become part of a carer’s support team and make sure they’re cared for too.
https://www.dementia.org.au/living-dementia/caring-someone-dementia/taking-care-carer - Dementia and family relationships
Dementia is a major disruption to your family life. Here’s how to talk to children about dementia, and advice for parents and partners in a caring role.
https://www.dementia.org.au/living-dementia/staying-connected/dementia-and-family-relationships 
Visiting someone with dementiaVisiting a loved one with dementia can make a big difference to both of you. Here’s how to make the most of your time together.
https://www.dementia.org.au/living-dementia/staying-connected/visiting-someone-dementia
Men in the caring role
Vincent Poisson explores the experience of male carers of people with dementia. Learn about the growing number of male carers, and get tips and strategies to help male carers.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Men in the Caring Role]
Vincent: Welcome. My name is Vincent Poisson. I'm the state manager of client services at Dementia Australia. Many men find themselves caring for someone with dementia. The vast majority will support their spouse, generally female, although many other men will support a parent, an adult child, their siblings, friends living with dementia. This presentation will provide an overview of males who support a person living with dementia. I would like to begin by acknowledging the Traditional Owners of the land on which we meet today. I would also like to pay my respects to Elders, past and present.
The target audience for this presentation are men who are the primary support person for the person with dementia, men who are involved in the support network of the person with dementia, family and friends of a man who supports a person with dementia. The aims of this presentation are to raise awareness about the increasing number of male carers of people with dementia, to validate and acknowledge the experience and approach of male carers, to flag the common issues faced by males who care for a person with dementia, and to provide tips and strategies to male carers to facilitate their caring role.
Why are we interested in male carers? The number of carers of people with dementia in Australia is unclear. Based on the available data, the Australian Institute of Health and Welfare estimates that in 2021, there were between 135,000 to 337,000 informal carers of people with dementia who lived in the community. However, this is likely to underestimate the true number of carers of people with dementia in Australia. They estimate that approximately 72% of primary carers are female, and importantly, only 28% of male carers of people with dementia. However, research is pointing to an increasing number of male carers.
Demographic estimates suggest that approximately 63% of people living with dementia were female and 37% were male. So, dementia seems to impact more females than males. More than 65% of people with dementia live in the community, and 86% of them live in their own home, and are mostly cared for by a spouse or a partner. So, given that most people with dementia are female and they are cared for by a spouse, this suggests that, in reality, there may be more male carers out there, but they are likely not reflected in the population estimates. Research suggests that with the increasing number of people living with dementia in the future, and because dementia impacts much more females than males, we may soon see an increase in the number of male carers and they might even surpass the number of female carers.
For example, in Australia, the number of male carers increased more than the number of female carers between 2006 and 2011. In New South Wales, in 2020, male carers made up for approximately 42% of all carers. In the United States, men made up for approximately 40% of all family carers, which, at the time, represented approximately 21% increase from 1996 to 2008. Now, interestingly, in Japan, the population of male carers of people with dementia quadrupled from 8.2% in 1981 to 32.2% in 2010. Nowadays, and more so in the future, we are seeing more women in the workforce working as professionals, which has increased the pressures on men to step into the caring role. Research suggests that current demographic and health trends will result in more sons providing care in the future. The above points to the strong possibility that, in Australia, male carers are likely to represent much more than the reported 28% of carers of people with dementia.
Currently, what we are seeing, the public face of the typical carer is that of a female. Often, a wife or a daughter of the person with dementia, but research seems to suggest that with the increasing number of people living with dementia, there might be an emerging hidden carers group that is male carers. We expect the face of the typical carer might be soon of a male carer. So, you might ask, "What's the problem? Why are we interested in male carers?" Well, the literature says, and our experience says, that male carers are less likely to identify as the carer, thus, less likely to access support services. It's common to hear men say, "I'm fine now. We are doing well here on our own." It is also common to hear that carers will not identify themselves as the carer, and are more likely to remain isolated, thus not aware of available help out there. It is common to hear men say, "Ah, I'm fine. We are doing well right now." Also, men are more likely not to recognise, or to downplay the symptoms of dementia, and to attribute these symptoms to other causes than dementia. It is common to hear men say, "Ah, it's just a bit of stress. She'll be right."
Finally, and unfortunately, men will typically ask for help only once they have reached a crisis. It's not uncommon to hear men say, "I'll actually put my hand up only if and when I can't do it anymore. Until then, I'm fine. Thank you." So, there may be evidence that men are more likely to have specific needs and challenges that are not met within the service system, and which could lead to poorer outcome for the person they are caring for, and for themselves.
Why are male carers reluctant to ask for help? Some male carers experience feelings of shame and stigma which are anchored around the social constructs of masculinity, which discourages men from seeking support. Men have been socialised to appear stoic, strong, and independent. For example, previously depicted in movies and advertising as the Marlboro man, as we can see here, impersonated by John Wayne. That is the strong, tough guy who doesn't show emotions at all. Men were taught not to ask for help, to preserve the image of the dominant breadwinner of the family. And when they did ask for help, society, unfortunately, responded by reinforcing feelings of shame, failure, and incompetence.
Additionally, because men don't ask for help, and because they don't attend services, well, services have progressively evolved to support those in attendance – that is primarily a female audience, and these services are predominantly set up to address the female perspective of the caring role. So, when men have expressed feeling out of place when, for example, they attended group programs, and they were feeling out of place there. So, it's a bit of a vicious circle, if you want. Services have evolved to support those in attendance, that is female. When men attend these services, they feel out of place, because there are mostly female around. And, in turn, these services are perceived as inappropriate and unhelpful. So, in summary, male carers are on the rise. Currently, services don't seem adapted to support the need of male carers. Male carers will ask for help after a crisis, but it might be too late by then. Men will approach and experience the caring role differently to female.
What are some of the common challenges faced by male carers of people living with dementia? Firstly, taking over the household duties. Traditionally, in many homes, it's the woman who took the main responsibility for meal-planning, cooking, cleaning, laundry, and many other jobs that keep a household running. If the woman has dementia, she will gradually lose the capacity to perform some of these tasks that men in the caring role may need to begin assisting the person with dementia with those household duties. For some men, this may imply having to learn new skills, or different ways of doing things, and this, on top of their own responsibilities, and therefore, this may increase their stress level.
Personal hygiene: A male assisting a person with dementia may need to provide personal and intimate care, particularly as the illness progresses. Assistance may be needed with bathing and toileting. The person with dementia may also need help with dressing, hairdressing, and in the case of a female living with dementia, she may want to apply makeup, for example. For most men, these would represent new and unfamiliar experiences which might make them feel quite uncomfortable. Then, losing the emotional support of a partner. Generally, men do not have the extensive support system that most women have. They often rely on their partners for emotional support, and to maintain the friendships and family contacts that make up most of their support systems. As dementia progresses, the ability of the woman to provide emotional support, and maintain friendship, and family contacts will gradually be lost.
Now, let's look at some tips for male carers of people living with dementia. First of all, we'll advise you to look at your strengths and weaknesses as a carer. Write up a list of tasks and/or activities you enjoy doing as part of the caring role, then write up a list of things you do not really enjoy doing as part of the caring role. Please be specific there. Go into detail. Then, well, keep doing the things that you like to do, but please start to get help for the things that you don't enjoy doing. Reassess this list every six months because we know the person with dementia will need more assistance as the disease progresses. Now, if you struggle to come up with this list which is very common, then please call Dementia Australia to talk to one of our dementia support specialists. They will guide you through this process.
The next step is you can't fix a problem if you don't understand what's causing the problem. Dementia symptoms result from degenerative brain diseases. Symptoms depend on the type of disease and part of brain affected by that disease. Age is a risk factor, yes, but dementia is not a disease of old age. The person with dementia will progressively need more support to perform their daily activities. The person with dementia will eventually need 24/7 assistance and supervision. This is a very complex and serious illness. So, by understanding how the brain works, you will get a better understanding of the impacts of dementia. That is how it impacts memory, thinking, insight, behaviour, and many other functions of the brain. Please call Dementia Australia to learn more about dementia.
Next steps: well, you might think, "I don't need help now because I'm fit and healthy." Or you might say, "I don't need help now because I've got it under control. We are managing well for now," for example. You might also say, "Well, I'll actually ask for help only when I really need it." Well, please remember that things can change very quickly with dementia, particularly, if the person has other medical conditions, and/or if something was to happen to you. Remember that dementia is a progressive disease, and things can change rapidly. And unfortunately, the health system involves a lot of bureaucracy, and in most cases, it takes a lot of time to set up and to tailor the right level of support for the person with dementia.
Think of this: you have a spare tyre in your car as a precaution, in the event of a puncture, to allow you to get back on the road quickly, but you don't need a tyre to drive your car - so apply the same strategy in regards to support services, that is have them ready at hand for when you will really need them. For example, first of all, call the National Dementia Helpline. Even if you don't really know what to ask for, call the National Dementia Helpline, explain your current situation, and say that you want to start getting some help. They will guide you through the process. Delegate – look at your list of weaknesses as we discussed before, and see if any family member, friends, or even a neighbour could help you do some or part of this task. Remember, the less you have to do, the more you can spend quality time with the person with dementia.
Start early. As we briefly mentioned before, it's better to get services early to get used to how the system works. In regards to the system, some services will work for you, and unfortunately, some won't work at all, but the most important thing is to keep trying until it fits. You might also need to readjust these services as the disease progresses. Finally, plan for the long road ahead. Again, we want to stress that it typically takes a long time to get access to packages, and it's best to apply for these services as soon as possible, think of your spare tyre, so that you can easily access them when you will really need them.
Looking after yourself – balancing your own needs with the day-to-day demands of the role can be difficult, yes, but it's critically important. Think about what would happen if something was to suddenly happen to you? How would the person with dementia fare if you were no longer able to carry all your daily activities and duties? It's important to take care of yourself first, and then support the person with dementia. Your wellbeing might be critical to their wellbeing. You may need to pay more attention to your diet and exercise. For example, a walk around the block is better than nothing. Schedule some time off to recharge your own mental and physical health. It's recommended to plan regular respite from caring. Please don't wait for a crisis. Contact support services to find out ways to arrange respite.
Finally, looking at social connections. As I mentioned before, generally, men do not have the extensive support system that most women have. Generally, men often rely on their partners for emotional support, and to maintain the friendships and family contacts that make up most of their support systems. As dementia progresses, the ability of the person with dementia to provide emotional support, to maintain friendships and family contacts, will be gradually lost. It is essential to maintain social contacts and to find a safe place to air your emotions. Some men find it helpful to talk to other men who are also caring for someone with dementia. Family and friends, as well as support groups, may be valuable sources of social connection. Dementia Australia can link people to a large number of support groups throughout Australia. Support groups are typically run under the guidance of a group facilitator. The facilitator is usually a health professional, or someone with firsthand experience of caring for someone with dementia. So, stay connected with family and friends, join support groups, and attend carer education sessions.
Now, talking about a safe group for male carers of people with dementia. Dementia Australia has created a program called Blokes in the Caring Role, which has specifically been designed to support male carers of people with dementia. It is a four weeks workshop program only for male carers. It is heavily focused on providing practical strategies to help men better manage the caring role. It provides an opportunity for men to air their concerns in a safe environment, and to be linked to other men who share similar experiences than them. It is delivered by male facilitators across most Australian states. Please call the National Dementia Helpline, or go on the Dementia Australia website to learn more about the program.
Some of the common feedback of people who have attended the program were, "I was relieved that other men were around. The group was very supportive and helped me understand the challenges ahead, as my wife is in the early stages. They gave me a number of strategies and clarified what is important, and not important in this role."
Now, you might also want to have some useful contacts and services. The first one would be we would strongly encourage you to visit our library services on the Dementia Australia website, where you can access resources tailored for male carers. You should have been provided this information before joining this webinar. Also, you may want to call My Aged Care. This will be your starting point to access a range of aged care services. You may want to contact Dementia Support Australia. They provide advice with behavioural and psychological symptoms of dementia. You may want to contact the National Continence Helpline. They provide advice with incontinence. And you may also want to call Nurse on Call. They provide expert health advice from a registered nurse 24 hours a day, seven days a week.
Well, thank you very much for your time, and please remember to call the National Dementia Helpline on 1800 100 500. Thank you.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
[END of recorded material]
Younger onset dementia and the caring role
Dr Wendy Kelso, discussing both positive and negative emotions and the importance of well-being within the caring role for someone with younger onset dementia.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Younger onset dementia and the Caring Role]
Dr Kelso: Hello, my name's Wendy Kelso, and I'm here today to talk about young onset dementia, and the caring role, for the Experts in Dementia Series. I work as a clinical neuropsychologist at The Royal Melbourne Hospital, at the Neuropsychiatry Unit, and I also run the Frontotemporal Support Group for Dementia Australia. I'd just like to begin by Acknowledgement of Country. I begin today by acknowledging the traditional custodians of the land, on which we meet today, and pay my respects to their Elders, past, present, and emerging. I extend that respect to Aboriginal and Torres Strait Islander peoples here today. This is what we're going to talk about today, which is caring for someone with young onset dementia, and how that differs for caring with someone that has dementia in their '70s, or '80s, or '90s. The rewards and challenges of caring, personality types and caring, care partner stress and how to reduce it, emotions in caregiving, and how they can impact on the caregiving experience, and how to use supports to your advantage.
So, what do carers do? Caring is a very special role, and often, carers have a huge range of different tasks that they're responsible for, including emotional care, aspects of personal care, domestic care, physical care, looking after finances, providing health care, and also, communication. How is caring for someone with young onset dementia unique? Dementia is often unexpected in a younger person, and many people take a very long time to actually get a diagnosis, because when they visit a GP or a specialist, sometimes, they're not believed, and the GP may not believe that dementia can affect a younger person. And that delay into diagnosis can be very important, because it can impact how the person feels about the person living with dementia, and believing that the changes may not be real. The care partner may still be working, and this impacts on the family, which means that there's often financial hardship, and a loss of income. And one of the people in the relationship may have to stop work, or the other has to take on all the burden of the financial responsibility.
There are often dependent children involved, and also, you may be looking after people, your parents, for example, and be part of a sandwich generation, where you're looking after younger children and parents. There's often a grief and loss, and changes of roles and expectations. And it's very difficult because the future's very uncertain, and often, people don't know what the future's going to look like, and how long the person with dementia will be alive for.
So, what influences caring in young onset dementia? Something that really influences caring is changes in relationships, and often, there can be relationship changes because there's frustration on both sides. The person living with dementia may have had to give up work, and that may be a huge loss for them, and the other person may have also had to give up work to care for the person with dementia. There may be family tension in the children because they don't understand the changes that's happening in mum and dad, and wonder if it may be their fault. Sometimes, there's isolation and loneliness, and often, friends stop visiting because there's a stigma involved in dementia, or friends may not know how to relate to the person living with dementia anymore.
What also influences a relationship is the personality characteristics of the care partner, and the person living with dementia. And these may be personality characteristics that have been lifelong. There may have been tensions in the relationship before the person developed dementia, and that can impact on caring for someone once they have a diagnosis of dementia. Sometimes, there's feelings of guilt and obligation, wondering if you could be doing a better job caring, feeling obligated to be in a caring role, when sometimes, it's very frustrating to do that. There's also stigma involved with people treating you differently, and people treating the person living with dementia differently. Often, there's a huge amount of grief, and sadness, and devastation. Why did this happen to us? What do we do to deserve this? And there is a difficult balance of caregiving and self-care.
Other things that are impacting the caring role are also the physical symptoms associated with dementia, the type of dementia – so if someone has Alzheimer's disease, for example, the type of person they are and their personality may be preserved until quite late in the illness, but with frontotemporal dementia, there's often changes to behaviour and personality quite early, and that can impact on intimacy and the relationship between the two partners. Also, rate of disease progression can impact on caring – so, for this, it's very slow illness progression to very quick. Behavioural symptoms, so if the person has changes in behaviour, that can cause changes in the relationship and can be difficult to manage. And also, can sometimes be frightening, or young children may not understand what's going on, if they live in the family home. And dementia may be one of many medical conditions that the person has, and there may be quite complex medical appointments that you have to attend, and take up a lot of time.
So, relationships and connection are really core in dementia. And I think, one of the most common things that we find, particularly when I'm running support groups, is people grieve the loss of the connection with the person living with dementia. And the person living with dementia grieves that loss of connection, as well. They may not be able to communicate the way they did before, because sometimes, there's language changes, where the person with dementia may not be able to express what they want as easily as they did in the past. They may lose language altogether. They may not be able to understand language as much. And also, there may be changes in what we call social cognition, so the person with dementia may find it more difficult to read emotions of the other people living in the family. They may find it more difficult to see if someone's happy, or sad, or frustrated, or angry, because a part of the brain that processes emotions and facial recognition is damaged.
They may not have the same empathy towards the other people in the family, due to changes in the brain, and that could all impact on the connection relationship together. All people need love and intimacy, and compassion and understanding, and you may need to think of other ways to be able to communicate or to show compassion, and love, and intimacy, and get your needs met. Often, we find it helpful for people to think about what brought you together in the first place, and why are you the carer in this particular relationship, and what still binds you together? What's still left in the relationship that's very special and connects you, and think about the family of origin, and the culture, and your shared past experiences. And also, try and live in the present and not worry too much about the future. Live day by day, and think about shared memories that you're making together now.
What are some of the rewards and challenges of caring? Some of the rewards of caring are it's a very important role, and there are actually many rewards. And it is an opportunity for personal growth and developing new skills. For some people, they may have never been a carer before, and this may be the biggest challenge that they have in their life. And it's also the biggest opportunity for personal development and growth. It's a time to strengthen the relationship with the person that you care for, and meet new challenges. And also, it can be really rewarding to know that you've contributed to improving someone's quality of life, and can provide a sense of meaning and purpose for the person that's caring. But there are lots of other consequences of caregiving, and particularly when you're caring for someone with young onset dementia, it can be actually more difficult than caring for someone who's older that develops dementia.
One of the big things is, obviously, financial changes, which is there is often a reduced income to the family unit, because one person may not be able to continue work, or they may have to work in a reduced part-time capacity. You may have to access super insurance early, or take an unexpected retirement. There are physical changes, as well, which means that people that are in caring roles, and lots of research studies have shown to have increased prevalence of chronic health conditions, and poorer mental health, and reduced quality of life. And there's high rates of depression and anxiety in caregivers, and depression rates increase with illness severity. So often, as the illness progresses, and the person with dementia may not be able to do the same tasks as they did before, and the actual amount of caring increases, both physically, emotionally, and potentially, behaviourally, often, depression rates increase in the person or the people in the caring role.
I think it's important to think about why are you the carer? And some people start being the carer because of expectation, or there's no one else available. But I think it does impact on the caring journey, and I think it's important to spend some time reflecting about why you're in this role. And look, some people are born carers, and their personality is ideally suited to caring. They're patient people, they love caring for others, but not everyone is like that. And some people, in a caring role, are not a patient person, and they can find caring very, very difficult. And some people are just not suited to the caring role, and may need a lot of support. Now, there's nothing wrong with that. No one's to blame for that but just different personality types can impact on the caring role. So, think carefully about your own strengths and limitations, when you're in the caring role, and even before you take on those tasks.
So why are you the carer? Is it because you love the person and you've been together forever? Is it that you feel a sense of duty or obligation, or there's other people in the family that are expecting you to care? For example, you might be the eldest sibling, and there's a family or cultural expectation that you will look after the person? It may be because you feel guilty, or the relationship wasn't wonderful before the person developed dementia, and you feel now that you must look after them? Expectation, maybe you need to for financial reasons, and there's no other option, and you don't have enough money to actually get supports in, or there's no one else available.
There's been a lot of research in personality types in caregiving, and some things that are found to be protective, which means that the person that's in the caring role maintains a greater level of fulfilment and quality of life, and reduced feelings of depression and anxiety. People that tend to be calm and less reactive, and able to regulate their stress levels. People that are socially connected, so they have a lot of support around them, are able to call on friends or family. That they're able to think flexibly, and if things go wrong, that they might be able to problem solve.
They've got the ability to delegate and the confidence to ask for help, and they also feel confident in their role as a carer, and that can be very difficult to do at the beginning, and often, throughout the journey, confidence can be rattled because as the dementia progresses, there are new challenges every day. And you may find that you've just solved one challenge, and then the dementia changes a little bit again, and the person has a change in ability, or there's different challenges that come up for both of you, and you have to adjust again, which can take some time.
Just wanted to talk now about carer stress and burnout. So, what is burnout? It's a state of physical, emotional, and mental exhaustion for those providing care to a friend or family member. And it's often accompanied by a change in attitude from positive and caring, to appearing negative and unconcerned, with many stages in between. So it can be, for example, someone who's always shown a great deal of empathy and compassion, feels that their emotional bucket is empty. So, for example, that they've been caring for quite a while, or they don't have much support, and they don't have many resources left to be able to care for the person, and they get exhausted.
You can see here, from this graph, that on the left-hand side is performance, and then on the right-hand side there's stress levels. And there's what we call a sweet spot, where a little bit of stress can be really helpful, and can improve your performance, and you perform optimally. But you can see, if you get too stressed or you get too tired, then there's really negative impacts of having too much stress. And increased cortisol over a long period of time can have a lot of negative effects on health, and can cause significant illness – people to break down, people to become very depressed, and burnout. So, it's about finding the right level, sort of in between, if you can, where you know that if you're finding that you're nearly at the point where you know that you're starting to feel differently, how you did before, and you're reacting differently, or your level of compassion has been significantly impacted, think about whether you might be developing burnout.
Why does carer stress occur? Often, people are so busy caring for someone that it can become really easy to neglect their emotional, physical, and spiritual health. And life doesn't stop when you're a care partner, particularly, when you're young. So, for example, when you're caring for someone with young onset dementia, you may still have young children, you may be looking after elderly parents, you're still working, and you have to keep going on. And the demands can sometimes feel overwhelming, which leads to fatigue, and a feeling of hopelessness.
What increases stress levels and what can we do about it? Often, people talk about that other people just simply do not understand the experience that the person's going through, either the person living with young onset dementia, or the care partner and family. And because young onset dementia is quite rare, often, people just simply do not understand, and they've never been in that situation, and they can find it quite hard to relate. And that means that, sometimes, people stop visiting because they're not quite sure what to say, and they feel that they might embarrass or upset the person living with dementia or the care partner. So therefore, that increases loneliness and isolation, which has negative impacts on mental health. Often, carers do not get the help they need or they don't know where to access it. And there's often a lack of resources, and education, and training, specifically about young onset dementia and the different types, impacts on behaviour, and also, what happens after the diagnosis.
It's quite difficult to access post-diagnostic care, and Dementia Australia now have a post-diagnostic care service, once someone has been diagnosed. We often find people often wait a very long time to get diagnosed, and then once they receive the diagnosis, that's it, they get very little follow-up, and actually, the time they need the support the most is actually after the diagnosis, not beforehand. There's a lack of specialist services for younger people, and that means a lack of specialist services for respite, for different activities that are meaningful, for those people that need to move into residential care, there's a lack of appropriate facilities and setups. And there's also a need for behavioural support, and often people find that very difficult to access.
So, what are some of the symptoms of burnout? How would you know if you're becoming burnt-out if you are a care partner? Some people withdraw from family, and friends, and loved ones, and they stop going out, and start refusing invitations. That they have a loss of interest in their usual activities, or when they do their usual activities, they can't gain the same pleasure that they’re used to. There may be changes in sleep or appetite. Some people feel blue, or helpless, or hopeless, and they just feel like life's not worth living anymore. Or they may become sick more often, that they get colds, or flu, or upset tummy, and often, these are due to stress. Becoming more irritable than they normally would. And look, often, the symptoms of burnout are very similar to depression, and they could require sort of clinical treatment. So if you're feeling that you're at the end, it's really important to access supports, ideally, before you reach burnout, but particularly, if you do reach burnout, and the first point of call is usually a really good and supportive GP.
Now, I want to talk about emotions in caregiving, and I think in the literature and also in the media, there's many images of people that are caregivers, that are Florence Nightingale and looking after people, and all positive emotions about caregiving. And I think sometimes that can make it really difficult to acknowledge that, actually, sometimes it's really, really very hard. So, I think it's important to acknowledge that all emotions about caregiving are valid and important, and acknowledge your feelings, not just the positive ones about caring, but also the ones that are actually challenging or difficult. And some of these feelings are hard to admit, for fear of being judged by others, or burdening other people, or acknowledging that maybe you're not coping, and some people feel that that might be a sense of weakness, and they're too scared to talk to other people, that they're not actually managing as well as they would like. And there is no right or wrong way to feel. This is often the first time anyone's actually looked after someone with dementia, so you're learning every single day.
What are some of the emotions that people feel when they're caregiving? Sometimes, it's ambivalence that they're not really sure if they want to continue in the caring role. Sometimes, they'll feel very anxious about what the future may hold, what that may mean for them, for their children. Sometimes, it's like Groundhog Day, where people find that it's quite boring looking after someone with dementia. Particularly if there's lots of changes in behaviour, or the same things are happening each day. Sometimes people can find the behaviours or changes embarrassing or disgusting, and there's a lot of embarrassment. Sometimes, particularly teenage children, if there are changes in the person living with dementia, they may find some of these changes embarrassing. The person living with dementia is not trying to make them feel embarrassed, but they can't help it, due to brain changes, but it can still make children and teenagers sometimes feel embarrassed, or not wanting to bring family and friends home.
Often, there's fear about the future. Will you be able to cope? Will you be able to manage if changes occur again? There may be jealousy with other friends and family that are not in a caring role, with the freedom that they have. It can be resentment towards the person you're caring for, and feelings of anger and hostility. And often, the overwhelming feeling is of loss and grief, and it can feel like a rollercoaster. And we often talk to families that there's huge changes, minute by minute, hour by hour, day by day, and sometimes, you just have to hold on. Some days will be better than others, but it is a huge rollercoaster of emotions, particularly, when you're first diagnosed, but right through the entire caring journey.
So, what can we do to help? We can identify and acknowledge feelings, and practise self-compassion. We can keep active and make sure that we look after our physical health. We can create a support system around us by enlisting friends and family, and also care organisations, and Dementia Australia. You can join a care partner support group, and Dementia Australia run a variety of different caring support groups which I'll talk about in a second. Often, people find grief counselling or counselling very useful, and education, and also getting some advice about cognitive interventions, to compensate for changes in memory and thinking, and also to assist with changes in behaviour, looking at respite, and sleep, and self-care.
So, what about grief and loss in young onset dementia? Often, when people are first diagnosed, there's a huge amount of grief and loss, both for the person living with dementia that have just been diagnosed, because their future is not what they thought it was going to be. Often, they may not be able to continue working in the same type of work that they had, which can be core to their sense of identity. They may find that their role in the relationship has changed, and they may find that the relationship with their partner, and their children, and their parents has also changed. And dementia is a life-limiting illness, so they're also thinking about the future, and often, for the care partner as well, there's a huge amount of grief that they were hoping potentially to retire together, to do things together, until they're old age, and what they had of their expectations of the future have been totally altered.
The experience of grief is very personal, and it's really different for every family, and there's no timetable for recovery. Often, people find that they are grieving throughout the illness from the very beginning to the very end, and then there's a different type of grief after the person dies. And often, it's what we call disenfranchised grief that can be very difficult, which is grief that's not acknowledged by society, that actually happens before the person with dementia dies. Where there may be changes in the relationship, and in intimacy, and communication, and possibly, in personality. And it's a different type of grief, and it's a grief that many people in the community don't acknowledge, or understand, and this can mean that it's quite isolating for people in a caring role.
I wanted to talk briefly about respite now, and respite is absolutely vital, and much needed, but it's often underutilised. Carers often are too nervous, or worried, or guilty, to organise respite, or it can feel too overwhelming to actually get organised, and to get all the paperwork done, and work out where the best place is. And particularly the first time that you utilise respite, it can be so stressful that people are reluctant to do it again, particularly, if it's first time they've been separated from their partner. We always recommend people to utilise it in the early stages, in the middle stages, and the later stages of the illness, so people living with dementia can get used to it. And there's adjustment on both sides, and it's really important to approach with thought and care. There are different types of respite. It may be that you would prefer in-home respite where someone comes into the home, and stays with the person living with dementia in your family home, or you can organise out of home respite in a house, or a residential care facility that's set up for someone with young onset dementia.
One of the things that occurs with respite is, often, people are so stressed before they have a period of respite, getting the person ready for respite, that when they actually have the person in respite, they find that they're not utilising their time effectively. And they're so stressed with a million different jobs that they don't know what to do. We often counsel people to think about what are specific goals that you really like to accomplish, before you plan the period of respite, and the goals must be attainable during the respite time. So, it may be simply that your goal is to catch up on sleep, or you want to clean the house, or you want to go out to lunch, but having those goals can be really good because it means that, in a lot of the research, that care partners have significantly improved satisfaction if the respite is planned and the goals are achieved.
One of the most difficult things that people find is asking for help. And sometimes, it's because they feel guilty and they don't want to burden others. Many people find that people say, "Oh, yes. Just give me a call anytime that you need help." But they don't actually give specific examples of what they could be helpful with, and so, people don't actually then call the person to enlist the help. So, how to ask for help? Be specific – if you're talking to friends and family, tell them what you'd really like them to do, and utilise the strengths of those around you. People are often waiting for you to ask but they don't want to burden you, and they don't want to intrude, and they don't know exactly how to communicate what help would be useful. And people may be nervous or uncomfortable, and they may not understand dementia, so try and normalise the experience for them. Let them in, tell them what's going on with you, and also with the person living with dementia, so they feel more comfortable spending time and being able to assist you.
Some people are much better at providing practical assistance than emotional support. That's absolutely okay, but think about your group of friends and family, and try and work out who's going to be best at what. Tasks to consider delegating – it can be emotional support with a person with young onset dementia. For example, if the person with young onset dementia has got a lifelong friend, or a group they used to be involved in, or work colleagues, they might be able to provide emotional support. Or emotional support for the person in the caring role, so friends and family, or a best friend from a long time ago that knows you really well that you trust, and that you can break down in front of, and if you're comfortable, crying and acknowledging that it's really difficult.
Sometimes, people are much better at practical things such as managing medications or collecting scripts. They may be useful at providing housework assistance or garden maintenance. They may be able to provide personal care, or you may know someone that used to work as an accountant, or can help with finances, or they may not be good at the practical support in the home, but they may be great at providing diversional activities, such as taking someone out on a drive, or an outing, or to a music festival, or to, for example, a choir, or something that the person with dementia might really love to do. And they may also be able to provide involving them in art, or sport, or reading them stories, writing together, or providing photos of times in the past, where they've got the shared experience, and they can reminisce about happy memories.
Just wanted to talk now briefly about available supports. There's a range of available supports, and all of these are on the Dementia Australia website. There's a National Dementia Helpline and Living with Dementia programs. And there's a variety of support groups for care partners of people living with young onset dementia around Australia. And at the moment, Dementia Australia's actually increasing the range of support groups available. At the moment, they have been provided via Zoom recently, and probably what will happen, there'll be Zoom groups, and also, in person support groups going forward. There's also a library at Dementia Australia with a great range of books and resources, and there's a variety of helpful websites.
If the person living with dementia is under 65, they're eligible for the National Disability Insurance Scheme. And this can be accessed with support of when you first get the diagnosis, by using a social worker, for example, on the team. And behaviour support can actually be provided through the NDIS, if it's deemed reasonably and necessary. And for people over 65, it can be My Aged Care. There's a list of other supports here, so some people with young onset dementia have rarer forms, such as motor neuron disease, or Parkinson's disease, or frontotemporal dementia, and we find that the Rare Dementia Support in the UK has actually got a range of excellent information and support available for different types of dementia that are quite rare.
I'd just like to thank you for having me today, and also, thank people living with dementia, and their families. Every time that we have the privilege of looking after a family living with dementia, and their care partners, we, as health professionals, learn more about dementia, and that can help us assist other people in the future. I'd also like to acknowledge Neuropsychiatry, Royal Melbourne Hospital. Thank you very much.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
[END of recorded material]
Family relationships and dementia presented by Dementia Australia family clinician Jane Smith
In this video we are joined by Dementia Australia family clinician Jane Smith, who has worked as a family therapist for over twenty years. Jane covers supporting families when it comes to relationships and communication with a diagnosis of dementia.
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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