National ambassador for Alzheimer's Australia, Ita Buttrose.
National ambassador for Alzheimer's Australia, Ita Buttrose.

Getting older is not the end of the world: Buttrose

ITA Buttrose believes getting older is not the end of the world but a time to embrace life to the fullest.

Twenty years ago, Ita Buttrose would have described herself as a rarity for speaking publicly about getting older. Buttrose says the messages about ageing were grim back then. Now, she says, that has changed and she no longer feels quite so rare.

"I think there's a bit more awareness now that getting older is not the end of the world," Buttrose says.

"If you heed the messages about health and you think really seriously about how you want to spend your older years, then you can feel quite confident that there's lots of things you can do to have a fantastic life."

To mark our 100th edition, Aged Care Insite sits down with Buttrose who, as well as being a patron of the Macular Disease Foundation and an emeritus director of Arthritis Australia, continues to raise awareness about living with dementia as national ambassador for Alzheimer's Australia.

Here, Buttrose discusses the ways in which perceptions of ageing and dementia have changed in the years since she first started lending her voice to the issues older adults face and how the milestones have shaped aged care in Australia.

ACI: From 2008 when you joined Alzheimer's Australia to now, what do you think have been the biggest milestones or developments in regard to dementia care in Australia?

IB: I think the biggest change is there is more awareness about dementia. [The Rudd, Gillard and Abbott governments] recognised the need for more spending on dementia care - so the Rudd and Gillard governments contributed [funding] towards better care packages for people with dementia and the Abbott government contributed $200 million over five years for dementia research.

Those were big steps forward, the recognition that we're facing a very huge challenge with dementia, and the numbers continue to increase, they're really increasing more rapidly than we expected. The last batch of figures remind us of that.

What I would like the current government to do is commit to a fully funded national dementia strategy because we don't have one.

This government needs to come up with a strategy because the case load is increasing. There are more than 400,000 people living with dementia now. We didn't think we'd get to 400,000 until 2020 and we're already there. You can see it's just increasing, so it's not good enough that we don't have a strategy.

How is Australia progressing in terms of the way that dementia is viewed by health professionals, the public and by people with dementia themselves?

It's such a big issue, and it still comes with a stigma, although we talk about removing the stigma, it remains there anyway.

Many people with dementia don't tell you if they've got a diagnosis, in fact they don't even admit they might have a problem with their memory because the mind is your barrier against the world, and nobody wants to admit there might be a problem with it.

Our research tells us that once a person gets a diagnosis of dementia they become increasingly isolated, they become lonely, their friends stop calling on them. I think this is not because they're unthinking, or deliberately unkind, but they just don't quite know how to handle it.

I've often said it, and so do many of my colleagues in Alzheimer's Australia, a person with dementia is still a person, and a person with dementia wants to feel valued in the community in which they live.

That's one of the reasons why we're working very hard now to create dementia-friendly communities in Australia and ultimately a dementia-friendly Australia. That's what we want … we want Australia to be dementia-friendly.

Do you think that the work of groups like Alzheimer's Australia, as well as voices of dementia advocates like you and Kate Swaffer, is starting to change the way dementia is viewed?

More people are realising that a diagnosis of dementia doesn't mean that you can't lead a meaningful life.

Kate Swaffer is a wonderful example of that, so is Christine Bryden. They've both shown a diagnosis of dementia doesn't stop you contributing, doesn't stop you speaking at conferences, doesn't stop you writing books, doesn't stop you - as I said - leading a fulfilled life.

I had an email to me at Studio Ten - the show I co-host on Ten - from a woman who had been diagnosed with younger onset dementia, and she was really quite depressed and asked my advice on where she might go for help and so on. I told her about Alzheimer's Australia Vic, I told her about some of our programs, I told her about people like Kate Swaffer, who have shown that you can lead a busy life, a fulfilled life. I got another note from her just this week to say that she has taken heart and she's now delivered a synopsis for consideration for her to deliver at the Alzheimer's Australia conference in Melbourne later this year.

Similarly, I was doing some fundraising for Alzheimer's Australia (Qld) in February, and I ran into a guy that I'd met at a previous Alzheimer's Australia (Qld) function, and he said: "You changed my life." He has been cycling around the world and he's going off to speak at a conference, but until I spoke to him [the first time we had met], he said he really thought there was nothing left for him. He had been a schoolteacher and so he was really full of despair.

They're little steps but they're very positive steps and they tell other people [what is still possible] and that's really important. You can see that you can still keep doing things … you just have to rethink how you might do them.

What have been some of the biggest developments in the aged care and community care space that we should celebrate and what might we be celebrating too soon about?

I don't know that we're celebrating anything too soon, but we're certainly celebrating some of the advancements of technology that now can be incorporated into residential aged care.

We're very excited about the virtual dementia experience, for instance, that was pioneered by Alzheimer's Australia Vic. That's an experience that takes people into the world of a person living with dementia, simulating thoughts and fears and challenges. I had a go at some of it … it's a really strange feeling, it's a really unusual feeling, we talk a lot about dementia and we meet with people with dementia, but having a virtual reality experience gives you a much better idea of what it's like to be a person living with dementia. That's a breakthrough that was created to improve the knowledge of aged care workers who are attending education classes.

We're now using gaming technology to create sensory experiences for people. You use a large interactive screen, and it might take you to a forest, and it's a forest for people with dementia, and they can experiment with it, and they can control it and they can change things by just waving their hands.

Again, it's something they share with the other residents and carers. It keeps opening up new worlds for them, it keeps showing them that there is life, there is this fulfilled life even if you have a dementia diagnosis.

There are a lot of new models and options for caring for people with dementia that are being developed. [A great example is] Hogeweyk, a village in Holland. They actually created a village and people with dementia live within the village, and everything's there. There's a supermarket and a café. They can't leave the town, but life goes on. They lead a life where all the things they're used to in their previous life before a diagnosis are there for them.

They're developing something like that down in Bendigo at the moment - it's a dementia-specific, community-style accommodation. There's person-centred care, always with the focus of improving outcomes for the person based on their lives and preferences. There could be dance classes, that sort of thing.

The huge thing we've been doing is developing these dementia-friendly communities. It is really important for a person with dementia to understand that.

Communities actively support and encourage them to lead their full lives in their own communities for as long as they possibly can, look out for them, encourage them to join in activities - it could be singing in a choir, it could be going to a café, it could be doing painting classes.

There's always something, learning or taking up a musical instrument. Often people have learnt music in the past, perhaps they've been busy and haven't been doing it, and once they go into a care facility or a dementia village or something like that, they pick up an instrument and they remember all these things. It comes back, because the musical talent doesn't really leave them, it might've just been lying there dormant.

These are all really exciting steps forward, and they weren't happening as little as five or six years ago.

[For years people have been] talking about the "ageing tsunami", which I felt always made older people feel as though they were a real burden, and the end of the world was nigh. But we know that's not true because so many older people today lead very active lives, they've got much better health because there have been so many developments in health. We've got the baby boomers getting older by the minute, and they want to age in a different way.

All these changes are going on, and it's numbers - the numbers of older people, it's the numbers of people with dementia that has really made the most people in the community and certainly governments rethink how they should be looking at older people and what sort of services they should be delivering and developing for people with dementia. With the aim always to keep them in the community, just like every other person who gets older, people with dementia want to stay in their own homes for as long as possible. I don't think that's an unreasonable ask.

How does the aged care industry shape what it means to age?

It took governments a while to get their head around it; we might have been talking about ageing tsunamis, but I got a feeling there were a few people in government that had their heads in the sand. Not necessarily only our government, but governments right around the world. Then it dawned on them: "Hey look, there's quite a few older people in Australia and in the world and fewer young people in many countries!"

It has been a slow dawning, and now they've suddenly realised that we need to find a way to help people age, we need to find a way to retrain them, we need to find a way to keep them in good health, we need to find a way to keep them active.

This story was first published in Aged Care Insite.

Meghan, Harry ‘struggling to cope’ in LA

Meghan, Harry ‘struggling to cope’ in LA

Dream of a blissful new life has quickly turned into a nightmare

Fresh confusion over virus 'detention'

Fresh confusion over virus 'detention'

Thousands of Melbourne public housing residents have been provided with "detention...

Man in iconic 9/11 photo dies from virus

Man in iconic 9/11 photo dies from virus

This man miraculously survived the 9/11 terror attacks