Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
Select Committee on the Future of Work and Workers

BARRALET, Ms Kay, Consumer Representative, Dementia Australia

SYKES, Dr David, Director, Centre for Dementia Learning, Dementia Australia


CHAIR: I welcome Dr David Sykes and Ms Kay Barralet representing Dementia Australia. Thanks for joining us today. I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided to you.

Ms Barralet : Yes.

CHAIR: Great. I now invite you to make a short opening statement, and we'll have some questions after that.

Dr Sykes : Thank you for the opportunity to present to the committee on this very important issue confronting our society. By way of introduction I'll outline a little bit about Dementia Australia. Dementia Australia, formerly known as Alzheimer's Australia, is the peak non-profit organisation for people living with dementia, their families and their carers. We represent the more than 425,000 Australians currently living with dementia and the estimated 1.2 million Australians involved in their care. Dementia Australia works with individuals and families, all levels of government and other key stakeholders to ensure that people of all ages with all types of dementia, their families and their carers are appropriately supported at work, at home and in their local community. Our close engagement with consumers as well as aged-care providers means that we are an important advocate for those impacted by dementia and that we are also well-placed to provide input on policy matters, identify service gaps and draw on our expertise to collaborate with a wide range of stakeholders, including researchers, technology experts and providers.

In terms of the scale of the issue we're talking about, I've already indicated the size, but also 25,000 people under the age of 65 years live with younger onset dementia, as is the case with Kay's husband. Without a medical breakthrough, there'll be over one million people living with dementia in Australia by 2056. This obviously poses a unique challenge for Australia due to the increased rates of prevalence, the personal impact and the impact on carers and families, not to mention the economic costs and social implications. As the prevalence of dementia increases in our community, it's critical that we are ready to support the growing number of people who will be living in our midst with dementia.

Dementia has profound social implications for people with dementia, their families and their carers. Often after a diagnosis of dementia, people experience social isolation and discrimination. Friends and even family members may stop visiting or calling because they feel unsure of how to interact with a person who has a cognitive impairment. As a society, sadly, it would seem that we are in denial about dementia, perhaps in a similar way to how we used to be around cancer not so long ago. As a result, people with dementia and their carers often lead increasingly lonely and isolated lives, when, with support, they could remain actively engaged and connected with the community. People living with dementia, like the rest of us, deserve to live a life with meaning and purpose. Try to imagine what it would be like if your loved one—and you may indeed be in this situation already—had the condition and that meant people avoided spending time with them or were even afraid of them. This is the reality confronting many people living with dementia every day in Australia. People are often afraid of what they don't understand. We need to raise awareness and break down the stigma and misconceptions that go with a dementia diagnosis so that people living with the condition are treated with dignity and understanding.

In recent years, Dementia Australia has been pioneering a program called the dementia-friendly communities initiative in Australia. Quite simply, it's a place where people with dementia are supported to live a high-quality life with meaning, purpose and value. In practical terms, the dementia-friendly communities movement aims to help people with dementia remain socially engaged, continue working, participate in volunteering, hobbies and cultural activities, and maintain social interaction. The movement also aims to enable people living with dementia to access the support they need. We recently launched a Dementia Friends program, and our goal is to have at least 20,000 Dementia Friends across Australia through completing a short online or face-to-face program that gives people a bit more of an understanding of dementia and what they can do in their daily lives to better support those living with dementia in their communities.

I want to now turn the focus specifically to younger people living with dementia. We certainly provide specific support to that group through our key worker program, which supports people who have received a diagnosis and may still be in the workplace. An increasingly large number of Australians will have younger onset dementia, and we'll need to prepare for a future where there may be as many as 42,000 people with younger onset dementia under the age of 65. Therefore, we need to promote workplaces which support people living with dementia to remain engaged for as long as possible with appropriate supports as well as promoting volunteering and other opportunities for people living with dementia to remain fully engaged with our communities.

The third and final area I want to touch on in my opening remarks is the area of the aged-care workforce. While we consider the future work needs of Australia, we also need to consider the important work of caring for people living with dementia. As you're already aware, dementia is a neurodegenerative and fatal condition, so most people with dementia will require high levels of care and support as their dementia advances. However, current trends in the aged-care workforce are troubling to say the least. At a time when we know the care needs of a growing number of vulnerable Australians are on the rise, the ratio of direct care staff is declining in aged care, and, most significantly, as the complex care needs of people living with dementia increases with other comorbidities, there is a startling decrease in the proportion of qualified nursing staff positions across aged care, most particularly in residential care. Dementia Australia is concerned that these trends are already impacting on the quality of care offered to some of the most frail and vulnerable people in our community, and this situation has the potential to worsen in the future as demand pressures increase.

To sum up the recommendations detailed in our submission, to ensure quality care, aged-care services must have adequate numbers of skilled, qualified staff committed to providing the best possible care, and the workforce needs to have the most appropriate education and training, and skills and attributes to provide quality care for older people, including people living with dementia, who, as I've said already, often have complex care needs. We need to set some clear minimum standards for dementia education, and even standards around dementia care could assist with this. It's interesting to note Scotland recently introduced minimum standards of dementia care. We also need to assist staff to develop a real empathy for those living with dementia. This is where we've been particularly successful with both our Virtual Dementia Experience and, more recently, our Educational Dementia Immersive Experience, or EDIE, where we give participants, through the use of virtual reality, an insight into what it might be like to live with dementia. What we've learnt through the evaluations of this program is that it gives people a similar level of understanding about dementia to a standard workshop, but the key differential is that it actually builds a level of empathy for a person living with dementia. It can have a profound impact on the way they conduct themselves and the way they go about supporting someone living with dementia. To attract and maintain the right workforce, equitable pay and conditions and appropriate career paths will need to be cultivated to nurture a workforce across aged care. Finally, and perhaps most importantly, we need to promote good leadership across the aged-care sector at a provider level, which creates positive learning cultures which coach and mentor staff to promote meaningful engagement with people living with dementia.

In closing, the challenges for the future of work and workers are that we need to create workplaces which keep people living with dementia engaged for as long as possible and have an aged-care workforce which attracts a greater number of suitably qualified workers to organisations which have strong leadership, create positive work culture and provide the best possible support and care for those living with dementia.

We trust that the matters raised in our submission and today will be of assistance to the committee in developing recommendations regarding Australia's future and to promote a dementia-friendly and inclusive Australia.

CHAIR: Thanks, Dr Sykes. Do you want to add anything to that, Ms Barralet?

Ms Barralet : Just very briefly, if I may. I am married to a man called Gregory. He's currently living in an aged-care residence here in Canberra. He turned 65 last week. He's the youngest one there. They call him the baby. The average age of the 64 residents in his nursing home is 90. He was diagnosed with young onset dementia at the age of 57. I was assisting with his care until three years ago, when it just became impossible for him to remain in the house due to falls, predominantly. He also suffers, unfortunately, from Parkinson's disease. It's a deadly combination at both ends, as it were, because he's no longer mobile.

I first became involved with Alzheimer's ACT, as it was then, when Greg was first diagnosed and in particular with one of the younger onset workers who attached herself to my family and became a source of support for us, mainly in the social field. She also helped me navigate through the system of Centrelink and doctors and things. Until you start this journey, you just have no idea.

What I want to say firstly is to generally back up what Dr Sykes has put to the committee, because it's very important, particularly now that I'm involved in the aged-care system, in the nursing home system, with the staff. As we all know, they are very lowly paid, but they are very kind and caring people and without them, of course, most of our loved ones just probably wouldn't survive very well.

I heard a very sad statistic the other day from somebody in that sector who told me that the average time that a care worker spends with a resident in a nursing home per day is seven minutes on a face-to-face level, apart from doing the actual care work. Just as a social interaction, they have seven minutes on average. I also heard on ABC Radio, too, that it's been estimated that, of all the residents in Australian nursing homes at the moment, 40 per cent have no visitors. If you combine that, particularly for younger onset dementia patients, there is this lack of social interaction, even when they're in a facility that's designed to care for them. To me, that's a very sad thing, and I witness it daily. If I go to visit, there are a number of other residents, and they're just so delighted to see somebody. They know your name, and they'll call out to you, 'Hello, Kay.' I try to spend a few minutes just making light conversation with them, taking magazines for them or flowers or something like that.

Yes, the system is good at the moment, but what really terrifies me is what's ahead for Australia, because there are so many more people coming through our community as they are ageing who are going to develop the dementia diseases. It frightens me that we will not have the capacity and facility to care properly for them as we do now. Thank you.

CHAIR: Thanks for sharing that, Ms Barralet. They're some pretty frightening statistics, aren't they?

Ms Barralet : They are. It's sad, I think. It made me feel very sad when I heard that.

CHAIR: Good on you for doing your bit.

Ms Barralet : What else can you do?

CHAIR: For sure. Dr Sykes and Ms Barralet, you will no doubt have some views on this as well. What are some of the things that we could do to overcome the stigma that applies to people with dementia? I don't have a lot of experience with the disease. Is it possible to delineate the types of tasks that people with dementia are fully up to doing and others that are more of an issue, or in asking that question am I demonstrating the stigma which continues to exist?

Senator PATRICK: Chair, could I ask a question first—

CHAIR: Sure.

Senator PATRICK: because that's a really good question. This is about my understanding, to be able to get the answer to this question. You said in your submission that it's mostly people over 65—that's when, I guess, it's considered not young onset—and then feeding back. Just in terms of the stigma associated at work, I guess by that stage most people are departing the workforce. In terms of how that has to be handled at work, that would happen in the younger years, so I'm just wondering about what Senator Watt's asking you. In some sense, is it about managing a person who's already on a career path or is it about changing that person's career path and recognising that they have early onset dementia? Perhaps you could combine those two answers, but I'm just trying to paint the picture of who we're dealing with and at what stage.

Dr Sykes : Do you want me to talk about the younger onset group? I think that's where you're coming from.

Senator PATRICK: Yes, I think that's the context to answer Senator Watt's question.

Dr Sykes : I might start, but I'm sure Kay has some really valuable insights into this as well, so I might throw to her.

Ms Barralet : I can only speak subjectively, if that's all right.

Dr Sykes : Yes, go for it.

Ms Barralet : My husband was 57 when he was diagnosed. He was a senior partner in a large law firm here in Canberra and a very clever man—very cerebral. His memory started to go, and for about two years, I think, looking back, he was being covered by certain staff members, particularly his PA, who is a very kind woman. She would call me occasionally and say, 'We've got a bit of a problem with Greg. He's forgetting things. He forgets appointments and he forgets he may have dictated a letter already, and I'll get the same letter dictated with variations.' At that stage, he hadn't quite been diagnosed. The minute he was diagnosed and he agreed to tell people this, because he hid it for a long time, his two other partners in the law firm sacked him, basically. They told him to get out. That was a dreadful thing for a person in this situation because, apart from the income side of it, which was scary for the family, he had nothing to do. There was an upside to that because he suddenly realised that he'd always wanted to paint, so he started going along to various painting groups. Last week they had an auction of artwork by dementia sufferers—I don't like to use that word 'sufferers'—at which he sold four paintings. They raised some money for the local art painting group here in Canberra. One of the most thrilling things for him is that the National Gallery bid on two of his paintings, but they only had a very limited budget, so they weren't successful. I was so proud of him having developed that skill, which otherwise would never have come out, but, at the same time, for him to be suddenly cut off from his life work, his clients and the care and compassion that he had for people was, I think, quite cruel. As I said, it was younger onset; he was about 57, so really in the prime of his career. He had, at one stage, been a legal adviser to the Chief Justice of the Family Court, so he was up there. So I think that, on a subjective level, is a result of developing dementia. As far as the other statistical things go, I think Dr Sykes is in a far better position to comment than I am.

Dr Sykes : No, I think that was a brilliant example of, sadly, in that younger onset group, the whole challenge of receiving a diagnosis and the consequences that can flow from that from an employment viewpoint. Not only is there the personal challenge that any of us might face—'Okay, something's not quite right; I need to have it checked out;' I think it is, increasingly, one of the greatest fears in our community that we are developing or might be developing dementia, perhaps along with cancer. So there's a real reticence to go there in the first place, but then, if you know that in an employment context that has the real potential to jeopardise your future employment, there's even more of a disincentive to really follow that path. As we say and promote, the earlier you can get a diagnosis the better, even though we know from both local and international research that on average it takes about three years from the first development of symptoms to a formal diagnosis to occur, and there are a whole lot of reasons for that. Some of that's what we're talking about today, but that is a real barrier to even getting to the point of answering the chair's question about what sorts of adaptions you might need to make and what sorts of adjustments you might need to consider, because all of that is presumptive of there being a positive response to even identifying yourself as someone who has been diagnosed with dementia.

If you've got over that major hurdle, and assuming you've got one of the few employers out there, it seems, that has a positive approach to this, coming to your question about what sort of adaptation you might need to make to the work environment, it is a very individual thing. Even though there are 100 different forms of dementia, Alzheimer's being the most common, each person living with dementia or living with Alzheimer's will be affected differently. That's why we often say, 'If you've met one person living with dementia, you've met one person living with dementia.' Don't presume that another person has the same experience, the same challenges, the same abilities or the same limitations. It is very much that whole emphasis on what that person's capabilities are now. I think Kay's example of how staff were able to identify those areas where, clearly, there was some deficits forming, and they were able to jump in and assist—

Senator IAN MACDONALD: What's the solution to that? Dr Sykes and Ms Barralet, don't for a moment think that I'm not sympathetic and concerned about that—I used to be a solicitor myself—but, quite frankly, if you have a partner who has forgotten that someone offered them $5 million in a settlement and they had forgotten to tell their client—

Ms Barralet : It was never quite that dramatic.

Senator IAN MACDONALD: All I'm saying is that I can understand why the remaining partners would be a bit cautious, but how do you address that? You can't expect the other two partners to carry a third partner, particularly in legal practice these days; it's not as lucrative as it used to be.

Ms Barralet : That's quite so, yes.

Senator IAN MACDONALD: So how can we as a society and as a government, perhaps, help the situation you identify? It's not the partners that have to fix it; it's society generally. I just wonder—

Ms Barralet : You're quite right. Eventually the outcome is always that the person has to—I think the previous speaker spoke of transition.


Ms Barralet : I'm not that unrealistic. Of course he was always going to have to retire at some stage. It was just a shock because he was, in my view, so young. At 57, it is not what you were planning for, as it were. You asked for, perhaps, some sort of main things that could be done. The main thing that I have found is that a lot of people equate dementia with mental illness—they do. It's getting a lot better, because there's a lot more publicity about the condition, but I found in the past that people seemed to think that dementia was a form of mental illness, and, of course, as we know, it's not. I think it's so important to get that message across to the community that you can have somebody who is living with dementia but it doesn't necessarily mean they're mentally ill, or you can have someone who has mental illness as well. I think you have to be very careful to delineate. People are frightened of mental illness.

Senator IAN MACDONALD: There used to be a stigma—perhaps I move in the wrong circles—years ago. These days it seems that it's more like how some people catch colds—well, that's probably not a good example. But you can have Parkinson's, which does not really have a stigma, and I think people treat dementia—

Ms Barralet : That's getting better through the endeavours of organisations like Dementia Australia or Alzheimer's, because of the publicity. It's made it just a normal progressive degenerative disease, like cancer. I'm talking about when Greg was first diagnosed, which was eight years ago, and I found back then that there was a lot of stigma attached to it.

Senator IAN MACDONALD: This inquiry is about the future of work. We're worried about robots taking over, but clearly we won't have robots in the aged-care system and the—

Dr Sykes : Look, they've been trialled, and they're continuing to do trials around that.

Senator IAN MACDONALD: Really?

Dr Sykes : Yes. There are a number of trials both here, particularly through Griffith University, and also internationally. It's more that they provide, in the early stages, some way of social connection, if you like, that enables people to have some regular check-ins with someone—because 70 per cent of people living with dementia live at home within the community. The remainder are obviously in residential aged care. I think about 50 per cent of people living in residential aged care have some form of dementia, along with other things. So if you can actually provide a greater level of support, particularly for the increasing number of people who are living on their own in their own home, that's certainly a factor, but it's not in the actual provision of care, which I think is where you're coming from, so they can't actually, as their care needs increase, perform that.

Senator IAN MACDONALD: We're always going to need human beings—

Dr Sykes : That's right.

Senator IAN MACDONALD: Clearly, aged care is one of the growth industries, regrettably. Just in this last budget there was provision for another 20,000 aged-care home places, I think.

Dr Sykes : That's right.

Senator IAN MACDONALD: Do you have statistics on the number of either temporary-resident or foreign nurses? My sister was in a nursing home for some years, and I had a bit to do with the nursing home, visiting her and all that. It seemed that, if it hadn't been for what we can loosely call 'foreign nurses', the nursing home wouldn't have operated. Is there a statistic on how many there are? Perhaps Canberra is a fraction different.

Dr Sykes : Certainly, there is a figure in the last census of the aged-care workforce, which was done in 2016, but I'm terrible with recalling figures. What I can tell you, though, is that we run a program called Dementia Essentials, which is a Commonwealth funded education program which all Commonwealth funded aged-care providers can access. In our own analysis of that, we worked it out to be that at least half of the participants in that program come from a non-English-speaking background. It's the reality of the nature of the workforce that is does attract that migrant workforce because of the low rates of pay. In fact, I was talking before about the virtual reality piece we've done. The evaluation showed there was actually better understanding of dementia through that because it was less reliant on the spoken word and people could have an experience. So we actually found that worked better with a non-English-speaking background audience.

Senator IAN MACDONALD: You say 'low rates of pay', which I'm not familiar with, but I guess that's one of the reasons why highly qualified nurses are not working in that system but others are. Again, it comes down to a question: is it better to have lowly paid workers rather than no workers at all? A lot of the nursing homes are community operations, not government, and they struggle to make balances meet. Is looking at the pay structure an important part of the work done in the interaction Dementia Australia has with care for people with dementia?

Dr Sykes : We certainly regularly push that whole question of remuneration and rates of pay. I think a direct-care worker can get somewhere in the order of what a taxi driver gets, in terms of pay rate.

Senator IAN MACDONALD: And they don't get the tips the taxi driver gets!

Dr Sykes : Yes, they don't get the tips. The whole question of remuneration is one that I know the Aged Care Workforce Strategy piece that Dr Pollaers is currently pursuing is considering.

Senator IAN MACDONALD: Who's considering that?

Dr Sykes : It's John Pollaers, who is heading up the Aged Care Workforce Strategy piece that the Department of Health are progressing at the moment. I know remuneration is a key component of that. The only cautionary thing for me is that our experience with aged-care providers would tell us that, even if you raise those rates of pay, there is some really poor leadership, sadly. That is why we do a lot of consultancy with aged-care providers to try and lift some of that, because the rates of turnover of staff are often reflective of that. You can provide the best possible education or training and support to that workforce, but they need to be getting the leadership and support, and the encouragement to spend more time than in the example you gave. And we have this challenge: are you task driven or are you person driven, particularly in residential aged care? Sadly, with the poorer performers, the focus tends to be—and they talk about it in this way, 'We've got to get so many feeds done and so many showers done.'


Dr Sykes : So the person comes out of the equation, and it is very much focused on the task. Unless we have really strong leadership around that, we'll continue to have that churn, I think, even if you've got better—

Senator IAN MACDONALD: It's not only leadership, is it not? They've got so many showers to do, so many toilets to do and so many meals to do, and—

Dr Sykes : Some of that is about staffing ratios.

Senator IAN MACDONALD: there is a limited number of staff.

Ms Barralet : Yes.

Senator IAN MACDONALD: You can double the staff, but then someone has to pay. It's the age-old question: how do you resolve that? It's easy. Governments should pay more money for nursing homes, but then government has got to get its money from—

Dr Sykes : Somewhere.

Senator IAN MACDONALD: all of us, and we don't like paying. It's a complex question. Your seven minutes was interesting. Thinking back to my sister, I would have thought it was a bit more than that but not much more. They do rush in and rush out because the next person needs to be fed too. This committee, though, is looking at what work will be available in the future. As I said before, in the care industry generally that is clearly one of the growth areas. When robots take over the jobs of politicians, I might be able to apply for a job as an aged-care helper—not that I'd be terribly good.

CHAIR: That was a comment.

Senator IAN MACDONALD: That's hardly a question, but thanks for that, and thanks for what you both do.

Dr Sykes : It's certainly a growth area, sadly. I think the questions for the committee are: What should that growth area look like? How should it be shaped into a really strong sector that has the capability to support this group and others as well?

Senator PATRICK: On notice, could you provide me with the distribution across the 425,000 people, in terms of an age group, that we were talking about. I'd be very interested in seeing that answer.

CHAIR: Thank you both for coming along. Best wishes to your husband, Ms Barralet, and to everyone that you work with, Dr Sykes.

Ms Barralet : Thank you.

Dr Sykes : Thank you very much.

Proceedings suspended from 10:21 to 10:38