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Sunday, October 24, 2021

Q&A: Maree McCabe AM, CEO of Dementia Australia and Director of the NARI Board

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Maree McCabe AM has dedicated most of her working life to making a difference in mental health and the aged care sector. As the CEO of Dementia Australia Maree was recently appointed a Member of the Order of Australia (AM) for significant service to people living with Alzheimer’s and dementia.  She speaks to Aged Care News about pushing boundaries, leading from the front and making sure dementia is given top priority within the aged care sector.

First off Maree, congratulations on being appointed a Member of the Order of Australia. What does this recognition mean to you?

Well, this really is a reflection of the work of Dementia Australia, and the team there are truly extraordinary. I think the other part of this that is so important, is it really raises the profile of dementia, and the $229.4 million allocation in the Federal Budget for dementia really does show that the Government is listening and understands that it’s not just about giving money to aged care, dementia has got to be core business… The biggest thrill for me is, finally, it is acknowledged and people living with dementia, their families, their carers, the workforce, feel validated because finally there is real acknowledgement that it is important. It is absolutely essential that we provide staff with the education and support they need to be able to care for people who live with a very complex disease and a complex condition. So, that for me, is the best part.

You have also been included in the COVID-19 Honour Roll for your contribution in support of Australia’s response to the pandemic. How did you support people living with dementia as well as staff during Melbourne’s long period of lockdown in 2020?

Again, that is a reflection of the work of Dementia Australia. When COVID happened, it was really about getting out in front and leading from the front. We were very quick to make sure that we quickly cancelled all of our face-to-face events. We immediately [began] transitioning to online services and programs, we immediately moved people to working from home, and the organisation was very agile and it was out in front, we were not waiting to be told what to do. It was obvious to us what we needed to do and we did it, and all the staff across the country were just extraordinary. All of the time, everything we did was about, ‘how will this impact people living with dementia?’ How do we make sure they get the support that they need? How do we make sure that nobody is left out in this? How do we make sure that all of our services are provided in some way?’, and for the most part it worked incredibly well. We were really delighted by the response of clients, the people living with dementia and their families and carers who transitioned to online programs very quickly. As an essential service, there were still some people that we needed to see who couldn’t manage an online program or even a telephone call, and we were able to provide support to all of them. So that was our key driver, making sure there was nobody and nothing left out.

The other thing was caring for staff, looking out for each other, making sure that teams were catching up, that they were finding things to do that were fun, that were inspiring, that we communicated across the organisation regularly. If anything happened, we let everybody know. We had regular Zoom meetings with all of our staff, so it was really about making sure that our leadership team was visible and accessible. And we were very clear in our communication about what they could expect, what was going to happen, and what the impact of that would be.

Maree, middle, with Dementia Australia Chair Graeme Samuel, left, and Alzheimer’s Disease International Chair, Glenn Rees, right.

I imagine the pandemic has been particularly difficult for people living with dementia and their carers?

It has, and some of the research coming out has shown that for many people, where they’ve had periods of social isolation, their dementia has actually been progressing more quickly and their symptoms have been exacerbated, and that is a real concern. We’ve got to learn by that. We don’t often think about family members as formal carers, but they are, particularly when people are in the later stages of dementia – they’re assisting with their meals, they might be assisting with their hygiene, they might be holding their hand, letting people know they’re loved and cared for, that’s so important. And when we went into lockdown, people were not allowed in to see their family members and that was devastating. It created care issues for a very vulnerable group of people. Now, these are unprecedented times, and we did not have a charter on how to deal with this, people just did their best. We’ve learned a lot from this, and there’s still more to learn and to implement from those learnings. People in vulnerable groups, their needs are different, their needs are more specialised and we’ve got to figure out better ways to support them at times like [this]…

You’ve been CEO of Dementia Australia for four years and Alzheimer’s Australia (as it was formerly named) for six. What is it that’s drawn you to work in this area?

My background is mainly in mental health, and dementia has always been an area that I’ve been fascinated by, along with care of our aged population. My dad had dementia, so having a personal experience as well, it was a passion for me and I do not want anybody to go through what our family went through. We didn’t know where to go, where to turn, how to get support. If we’d known about Alzheimer’s Australia (as it was then), our experience would have been very different. And so that really drives me to ensure that people know there is support available and this is a journey that is best shared, because there is so much that we can do for people living with dementia, their families and their carers, to support them to live well, remain engaged doing the things that they love for as long as they possibly can, to plan for the future and plan the type of care that is important to them. It’s both a personal and professional passion. It is such a privilege to be able to lead an organisation that really does make a profound and lasting difference to the lives of people living with dementia, their families and their carers.

“… there is so much that we can do for people living with dementia, their families and their carers, to support them to live well, remain engaged doing the things that they love for as long as they possibly can, to plan for the future and plan the type of care that is important to them.”

Can you take me back to your first role in the aged care sector and how it shaped your career moving forwards?

Well, my first role in the aged care sector was actually working for friend of mine who had a consulting business in aged care. I had moved back to Melbourne, from Sydney, where I was the general manager of hospitals for the brothers of St John of God. I came back to Melbourne and caught up with a friend of mine, she was doing management consulting in aged care and looking at management quality systems, she asked me if I would do some part-time work for her and I did. Now that was about 15 years ago and I was really struck [by it] … it reminded me of what mental health was in the early days of my career. I thought, ‘wow, I could really make a difference in this area’. So then I got a role at TLC Aged Care as the executive operations, being responsible for the management of all of the homes and I really loved that. We worked with a fabulous group of people and we did some amazing work. It was very inspiring to be able to work in an area where you could make a difference and to be able to do some of the things that were innovative, to grow the organisation, to develop staff, to develop managers, it was fabulous…

Aside from your current role with Dementia Australia, what has been your most rewarding role over your career?

Well, my current role definitely, that is a given. But the other one that I really loved was being the director of clinical resources, like the director of nursing, at the Melbourne Clinic. We did some fabulous work there, we had a great team, we were acknowledged as a centre of nursing excellence by the Australian Council on Healthcare Standards. We started doing things like home visits before they were a thing, we were willing to push the boundaries around what was possible in mental health. And that was a real honour and a privilege to be able to do that, to work with some amazing psychiatrists and researchers in the field of mental health, to set up programs that were cutting-edge. We set up a mother and baby unit, we were the first in Australia to do that, so there were lots of things that we did that were innovative, that were exciting and that made a significant difference to people living with mental health issues.We also involved people with a mental illness on our committees, so consumer engagement was something that we did, we were kind of leading-edge in that. At that time, I was also a surveyor with the Australian Council on Healthcare Standards and my specialty was mental health. So it was a really exciting time and a time of innovation and I was working with a team that worked really hard, and we had lots of fun together, which was great.

Maree, right, with former Dementia Australia dementia advocate Ian Gladstone.

What are some of your key leadership philosophies?

Well, I think it really is all about having a great team. And not just about having a great team, but it’s actually about empowering them to be able to do the things that are important to them. You’ve got to let people do their job and support them in doing it, acknowledge them for the great work that they do, set high standards, hold yourself and others accountable, and creating a great culture is part of that. Living the values that we espouse is really important, being a role model for those values and ensuring that they are expressed throughout the organisation. And being an authentic leader – I don’t know all of the answers, and it’s actually about being willing to say, ‘look, I don’t know the answer to this, we’ve got to figure this out’, and take advice from people. Our innovation at Dementia Australia, all of the technology that we’ve developed, those ideas have come from staff. That I think is the really exciting thing, is allowing people the opportunity to have their skills expressed in your organisation, their ideas expressed, and be willing to take those on. So celebrate the wins, have a clear strategy, be authentic, have high standards and hold yourself and others accountable.

You’ve got to let people do their job and support them in doing it, acknowledge them for the great work that they do, set high standards, hold yourself and others accountable, and creating a great culture is part of that.

What do you think the aged care sector’s biggest takeaway from the royal commission should be?

That we need to transform, we absolutely need to transform. We need to adopt the recommendations from the royal commission and we need to put them into action. There are some providers that do an amazing job, it needs to be every provider does an amazing job. The other part is, we have incredible people that work in aged care and we need to support them with the knowledge that they need to be able to do their jobs well and to love their job. We need to have role models and mentors in aged care and programs that support that. And I think what came out of the royal commission is a once in a generation opportunity for us to totally transform the quality of care and life. We have the privilege of supporting people living in residential aged care and caring for them in the community. And we were delighted that all of the recommendations made by Dementia Australia were included in the final report from the royal commission. And then, with the budget that was handed down, Dementia Australia had developed the Roadmap for Quality Dementia Care and we were so thrilled to see that Government had actually adopted that and taken the roadmap and then allocated it as like a continuum, like a pathway. So dementia pathways, education and everything that was in the roadmap was there in the budget. It was just so exciting to see that it had been taken on board and I really now see that dementia will actually be core business in aged care.

And how about the general public? What do you hope they might take from the findings?

Vigilance, and a level of confidence that their loved ones will be cared for well, that they will be cared for in a way that supports them in the things that are important to them and that they are partners in that care. In the media what we see mostly are all of the things that are not working, but there are so many things that are. And all of the reviews that we’ve had in aged care, there has been a lot of work that has been done, but they’re not the things that make the news. What makes the news unfortunately, are the things that are not working. But it’s really about the community having confidence, knowing that they can be partners in the care of their loved ones and that their loved ones can be well cared for. They’re the things that I think are really important for the community to know, and that’s the job of all, to make sure that the recommendations from the Royal Commission are implemented such that people can expect to have confidence in our system.

“… it’s really about the community having confidence, knowing that they can be partners in the care of their loved ones and that their loved ones can be well cared for.”

Do you think dementia has been given enough priority within the aged care sector thus far?

Look to date, mostly not. And that’s the benefit of the budget allocation, that is just thrilling to see that, because it does put dementia front and centre and the recommendations from the royal commission do that, and the Roadmap for Quality Dementia Care does that. So I’m very confident now dementia will be given the profile, the support and the funding that it needs. And staff will be given that support in terms of education and making sure that it’s something they can see as a career path there for them, they have the opportunity to make a profound difference to the lives of people living with dementia. And if we get it right for people living with dementia, if we get care right for them, we get it right for everyone.

Would you say that dementia is well understood within the broader Australian community?

I think it is better understood than it was, but there is still a way to go. And most people don’t realise that dementia is the second leading cause of death, after heart disease, in Australia and the leading cause of death in women. Many people just think, ‘Oh look, you know, you get older and you get a bit forgetful’. But it’s so much more than that, it has a profound impact on a person’s ability to function, to think, it has an impact on their personality, their mood. It is just so significant. And I think we’re getting better at raising awareness about dementia and that’s really important. It’s important that communities are more inclusive. Unfortunately, I think dementia is kind of like an invisible disability, and what we can’t see we often don’t understand, and what we don’t understand, we fear and we avoid. That’s the experience of people living with dementia, they feel isolated, they say it’s the most profoundly isolating condition and that family members and loved ones ignore them, they don’t include them. We need to shift that. It’s not to be feared, it needs to be embraced. We can and we do make a massive difference to the lives of people living with dementia and we want the community to know that they have a part in that.

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