Parliament: Parliamentary Initiatives

Motion – Kate Swaffer

Adjourned debate on motion of Hon. K.L. Vincent:

That this council notes the contribution to dementia awareness of Kate Swaffer and—

  1. Congratulates Kate Swaffer on being named as South Australia’s Australian of the Year;
  2. Recognises Ms Swaffer’s role as chairwoman, chief executive and co-founder of Dementia Alliance International; and
  3. Acknowledges Ms Swaffer’s role as a local, national and international advocate for dementia patients.

(Continued from 9 August 2017.)

The Hon. S.G. WADE: I rise on behalf of the Liberal team to support this motion. Kate Swaffer was named South Australia’s Australian of the Year in 2016, in particular for her work in dementia advocacy. It is a pleasure, on behalf of our side of the house, to welcome her to the chamber today.

Kate has had a long association with dementia. In fact, she was a nurse in Adelaide’s first dementia unit in the 1970s, but in 2008 it became more personal. Before her 50th birthday, she was diagnosed with dementia. In the 10 years since, Ms Swaffer has continued to live a full life. She has completed three university degrees and is currently undertaking a PhD. Locally in Adelaide, she has been an ambassador for Dementia Australia, which until recently was known as Alzheimer’s Australia. It is in that role that I have had the pleasure of meeting with Ms Swaffer.

Nationally, Kate has advocated for better services and outcomes for the more than 350,000 Australians currently diagnosed with dementia, and in that role has sat on numerous committees and councils. Internationally, she is chairwoman, chief executive and co-founder of Dementia Australia International and she was the first person with dementia to be a keynote speaker at a World Health Organisation conference. She is quoted as describing her advocacy mission in these terms:

I advocate in Australia, locally and globally to try and change the post-diagnostic experience to where people can learn to live with dementia, not only to die from it.

I am reminded of the phrase from the Dead Poets Society, ‘A life lived in fear is a life half lived.’ We need to support people with a diagnosis of dementia to live life to the full. We need to encourage people to look forward to ageing as an exciting chapter of life. I appreciate that Kate was a person who experienced early-onset dementia, but for a greater proportion of people dementia does occur later in their life. We need to encourage people to look forward to ageing as an exciting chapter of life. Like every other chapter, it will have its challenges, and that is more likely to include dementia than in earlier chapters, but our later years should be embraced.

I acknowledge Kate’s effective advocacy for people with dementia. My party and I are pleased to be associated with this motion and we thank the Hon. Kelly Vincent for bringing it to the council.

The Hon. J.E. HANSON: I rise to speak in support of this motion. I recommend that in accordance with that, a minor amendment be made to the final point to acknowledge Ms Swaffer’s belief that people with dementia are not and should not be defined by their disease. I move, in paragraph 3:

Delete ‘dementia patients’ and insert ‘people with dementia’

Ms Kate Swaffer has been named as South Australia’s Australian of the Year in 2017 and that was for her contribution, of course, to dementia awareness. Nationally, dementia is the largest known cause of death and disability of older Australians. By 2050, without a known cure, dementia is estimated to cost in excess of $80 billion for the care of over 900,000 Australians who, it is predicted, will have a diagnosis. Of these, 50,000 will be from South Australia. I wish to inform you that dementia-friendly communities is a priority for the ageing portfolio and for the work of the Office for the Ageing. I now acknowledge what the Hon. Mr Dawkins was saying.

As such, the contribution to dementia awareness of Ms Swaffer is to be commended. Ms Swaffer, a former nurse, was diagnosed with younger-onset dementia in 2008 at just 49 years of age. At this time, healthcare professionals and service providers advised her to prepare her end-of-life affairs, resign from her job and to give up studying and live for the time that she had left. They also suggested that she get acquainted with aged care as soon as possible. Since her diagnosis, as indeed the Hon. Mr Wade has already pointed out, Ms Swaffer has gone on to complete three degrees and is currently undertaking her PhD focusing on understanding the lived experience of dementia and improving the lives of those living with it and those who support them.

Ms Swaffer is now an internationally recognised speaker and advocate for more than 47.5 million people with dementia around the world. The poet, author, activist and academic sits on many boards, steering committees and scientific panels, providing an academic and consumer perspective and helping to set research priorities for dementia. Ms Swaffer is also the chairwoman, chief executive and co-founder of Dementia Alliance International, which is a global charitable organisation. Ms Swaffer is the only Australian to be a full member of the World Dementia Council and is the first person with dementia to ever have given a keynote speech at the UN World Health Organisation event.

Accordingly, I support the motion proposed by the Hon. Ms Vincent and note the contribution to dementia awareness of Ms Swaffer. I congratulate Ms Swaffer on being named as South Australia’s Australian of the Year, recognising her role as chairwoman, chief executive and co-founder of Dementia Alliance International, and I acknowledge her role as a local, national and international advocate for people with dementia.

The Hon. K.L. VINCENT: I am very pleased today to bring to a vote this motion acknowledging Kate Swaffer being named as South Australia’s Australian of the Year 2016 and also recognising her role as chairwoman, chief executive and co-founder of Dementia Alliance International, and acknowledging her role as a local, national and international advocate for the rights of people with people with dementia and for the better treatment of those people. It is particularly an honour and a thrill to be doing so with Kate and her husband in the chamber. I would like to again acknowledge their presence here this evening.

We know the work that Kate does day in, day out is so important, but it becomes even more so when you take a moment to look at the figures which indicate that more than 413,000 South Australians are diagnosed with dementia, according to the Dementia Australia website, and 244 new diagnoses will be made each and every day. As other speakers have mentioned, dementia is the second leading cause of death in Australia. The number of people with dementia in Australia is expected to rise beyond 1 million by 2056.

Mr Wade made an apt point when he quoted the Dead Poets Society, saying: ‘A life lived in fear is a life half lived’. I first learnt that proverb in Spanish from watching Strictly Ballroom, but the sentiment is very much the same.

The Hon. I.K. Hunter: Show-off!

The Hon. K.L. VINCENT: Less a show-off than a nerd, Mr Hunter. Anyhow, I will take the compliment. But Mr Wade is completely right. Yet just yesterday at a Dementia Champions morning tea that we are very lucky to hold with reasonable regularity here at Parliament House, we heard a number of startling statistics. We heard a number of startling statistics, but the one that most stuck with me was the estimate that one in 10 people admits to being afraid to communicate with a person known to be diagnosed with dementia—one in 10. And that is only the people who will openly admit to harbouring that fear. Unfortunately, regrettably, I would be willing to bet that the real number is probably higher.

It is through speaking to people like Kate and watching the episode of You Can’t Ask That, in which Kate appeared alongside other people with dementia and answered anonymous online questions in honest and often humorous ways to try to educate the community at large about dementia, that I was really struck by the fact that the changes to a person’s mind, their capabilities and to their life chances are very frightening. But often the answers to these questions that most stuck with me were where people were talking about how they had felt abandoned by family and friends since their diagnosis or increasingly isolated as fewer and fewer people were willing to engage with them as their diagnosis progressed. To me, that is the real sadness.

When it comes to a complex and often severe condition like dementia, it is difficult to select just one sadness. I think there are many, many travesties that can come with a diagnosis of dementia. But, on top of the challenges that the person diagnosed with dementia, often even newly diagnosed with dementia, and their family face, to couple that with the ignorance, fear and stigma that exists in the community, often even within those closest to the person diagnosed with dementia, I think that is a real travesty.

It is not just for the cost savings that we could make in properly treating dementia. It is not for the quality of life whilst slowing down the disease that we could achieve by properly investing in treating and researching dementia. It is the quality of life that I believe we all stand to gain from being properly educated about dementia and from not being afraid to reach out and educate ourselves to learn more and to learn from people with dementia, as Kate shows us, having completed three university degrees since her diagnosis, for a start—not before but since. As this shows us, people with dementia still have so much to give and so much to teach us, and so it is up to us to be willing to listen.

It is not only important that we save money and save the healthcare system and provide better life chances for people diagnosed with dementia, it is also important that we challenge that stigma wherever we encounter it so that we do not live a life half lived by living in fear.

The Hon. S.G. Wade: Say it in Spanish.

The Hon. K.L. VINCENT: Gosh, I have not practised in a long time and this is going to be tough for Hansard, but I will give it a go: vivir con miedo es como vivir a medias. I have not practised for a long time and it is very rusty, and I have not got my r. There it is: the r’s.

The Hon. S.G. Wade: Hansard will fix it.

The Hon. K.L. VINCENT: That is a triple or quadruple r. I am not sure, but Hansard are on to it. Anyhow, you have distracted me, Mr Wade, from this very serious topic. So, it is up to all of us to counter the stigma and ignorance that exists about dementia in the community wherever we encounter it. Given that, from the statistics that I have just quoted to you, it is estimated that over a million Australians could well be diagnosed with dementia by 2056, it is not only up to us to create a better life for those currently diagnosed with dementia. If that was not reason enough, which I certainly think it is, we also have to create the life that we might want to live should we be diagnosed with dementia. We all stand to benefit, and we have already benefited so much from the work of Kate Swaffer.

It is not just Kate, but also the group of people she is empowering to stand up: the group of health professionals who are now better educated about dementia and what it means and, perhaps even more importantly, what it does not have to mean. That education is very much occurring, thanks to the work of her and people like her. Long may it continue. On behalf of all of us here this evening, and also those who are out of the room, thank you for your continuing work. Long may it continue. I very much look forward to continuing to find it difficult to catch up with Kate because she is forever on a plane somewhere, off to make a speech or meet with somebody to represent the best interests of people with dementia. Long may that work continue. Congratulations from all of us to you, Kate Swaffer, and thank you on behalf of all South Australians for the fantastic work that you are doing.

I had written it down, but I completely neglected to say that I am thankful to Mr Hanson for bringing the amendment forward on behalf of the government to change the wording from ‘dementia patients’ to ‘people with dementia’. That is, of course, something that I would usually be very much advocating for. I think it might have been a copy and paste error that led to the original wording. The intent was very much to be focused on the social model of disability, as I hope my remarks, both previously and tonight, have illustrated. However, given that the mover cannot amend their own motion, I am grateful to the government for amending it. I support the amendment.

Amendment carried; motion as amended carried.