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]
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