Helen Polley (Tasmania, Australian Labor Party, Shadow Parliamentary Secretary for Aged Care) Share this | Hansard source

I rise this evening to speak about Dementia Awareness Month 2017, which runs for the month of September and aims to raise awareness of the second-leading cause of death in Australia. I would like to start off by commending Dementia Australia, formerly Alzheimer's Australia, on its strong and unrelenting advocacy for the more than 413,000 Australians living with dementia and the estimated 1.2 million people involved in their care. The theme for the month-long awareness campaign is 'you are not alone', which is encouraging us all to better understand dementia. All too often the diagnosis of dementia results in the falling away of friendships and relationships, and, sadly, people living with dementia, their carers and their families can be amongst the loneliest people in the country. We need to look past the often trivialised symptoms of dementia and focus on supporting, empowering and including people living with dementia in our communities.

Labor welcomed the beginning of Dementia Awareness Month last week by calling on the Turnbull Liberal government to take real action and make dementia a genuine priority. Dementia is now the second-leading cause of death in Australia. Dementia is not simply an ageing issue; it is a chronic health issue. It is a condition that affects people, not only in the medical sphere but also with social and economic implications. Quite frankly, it touches all of us.

The Economic cost of dementia in Australia 2016-2056 report, released in May, showed that the cost of dementia is predicted to rise to $36 billion per year, and the number of sufferers is predicted to double to more than a million by 2056 without genuine intervention. These disturbing figures alone should have served as a wake-up call for those opposite to take action. Disappointingly, there are no new investments for dementia in the 2017-18 federal budget. I do acknowledge the government's investment in research in this area, but what about those living with dementia now? What about those families and carers who are caring for their loved ones? What are we doing? What is this government doing to support those people here and now? Research is obviously essential but it should not be seen as the replacement for investing in dementia care, training and community awareness. If the Turnbull government were truly serious about dementia, it would follow Labor's lead and outline a strategy for dealing with dementia now.

Alongside my counterpart, the member for Bowman Andrew Laming, I'm very proud to be one of the co-convenors of the Parliamentary Friends of Dementia friendship group. This morning I hosted a special event to mark Dementia Awareness Month 2017—and I note the apology of Mr Laming, who wasn't able to attend for personal reasons. This year, we were fortunate enough to hear from Sally and Gary Pertzel. Gary is living with dementia, and he and his wife were very kind in sharing their story and the journey that they're taking together. Every time I hear somebody who's living with dementia share their story—usually with their wife or their husband—it is so inspiring. Quite frankly, it inspires me every single day to raise awareness of dementia in our communities and to remind the community that people with dementia are still the same loved ones that they were prior to the diagnosis.

We were also very lucky this year to have as a guest speaker Professor Steven Sabat from Georgetown University in the US, who is visiting Australia on a national speaking tour to raise awareness about dementia in the community. Professor Sabat's remarks were so enlightening to those fortunate enough to hear him speak this morning. He was inspiring. He was brilliant in the way that he brought it back down to a very simple level: people who are living with dementia are still the same people who have passions; they're still the loving, caring people they were before. If they had a sense of humour before their diagnosis, they would still have that sense of humour afterwards. It's so critically important that we acknowledge that these are the same people that they were before the diagnosis.

Professor Sabat said that linking dementia with memory loss can be particularly harmful because it assumes that those living with dementia can't make new memories or be affected by recent events and that it therefore doesn't matter how we treat them or speak to them. But people living with dementia can still make new memories or remember details in different ways. Someone living with dementia may not be able to articulate or recall something that happened, but they will certainly remember how they were made to feel. Recalling something is not the same as remembering. Just because someone fails to recall something doesn't mean they don't remember. Professor Sabat's speech at the Parliamentary Friends of Dementia event this morning was a timely reminder that people living with dementia are more than the sum of their symptoms. They deserve to live with dignity, support and respect.

In my capacity as the assistant shadow minister for aged care, I have the great honour of being able to focus a lot of my attention on this issue of dementia. I've been holding roundtables across the country, listening to those people who are living with dementia and their families and carers and also to the providers who are providing specialised care. So far we've had roundtable discussions in Canberra, Tasmania, Melbourne and, most recently, Perth, and there are more to come. We were very fortunate in Melbourne, when we held our roundtable at what was then the Alzheimer's Australia Victorian office, to have the Leader of the Opposition, Bill Shorten, join us. That was only a couple of weeks ago. It was fantastic to have Mr Shorten there so that he could hear firsthand from those who are taking the dementia journey and those who have cared, or are still caring, for their loved ones.

I'd like to mention a couple of people. I want to note two young women in particular because their loved ones are living with early onset dementia, but they are young, inspiring women. Tara MacDonald looks after her father, who was diagnosed with dementia in his 60s, and she says she's extremely passionate about ensuring that we have not only age-friendly communities but dementia-friendly communities. She's very active on social media. I take my hat off to her and I say, 'Keep up the great work, Tara.' Isobel Burke is 23 years old and cares for her mother, who was also diagnosed with early-onset dementia a few years ago and is now in residential care. Both of these women were able to articulate to us very clearly the things that need to change—the awareness campaigns we need to have in our communities. Both Tara's father and Isobel's mother are still the same parents they grew up loving and the parents who cared for them, but now Tara and Isobel have that role.

As a community, as leaders in this parliament and particularly here in the Senate tonight, we need to take heed of the messages from people such as Professor Sabat to understand the people who are living with dementia are still the same people they were before. The longer we are able to have people with dementia living in our communities, being supported in our communities and being supported at home, the longer they are going to stave off the inevitable. It's our responsibility. My family and I certainly have been touched—both my mother and father-in-law died from dementia; my brother-in-law had early-onset dementia. He was 38 when he was finally diagnosed after seven years. So I've walked this journey; and so I'm asking my colleagues to become ambassadors in their own right to talk about dementia and to help me make Australia dementia-friendly.