Posted on July 20 2018
2017 South Australian of the Year Kate Swaffer representing Dementia Alliance International, presenting at the 11th Session of the COSP in New York
In 2017, Kate Swaffer was the recipient of the South Australian, Australian Of The Year Award, representing our state in the national Australia Day Awards. Whilst for this award, she was predominantly recognised for her work in the field of dementia in Australia, it has evolved into a more globally focused activism, especially on human rights for people with dementia and those residing in aged care. During that year, Kate was overseas for 14 trips working with countries and attending international meetings, heavily engaged with her activism. Her husband Peter suggested to her in December 2017, she had “been using their home as a transit lounge since September!” This year, she has already visited and worked in five countries, with many still ahead of her before the end of the year.
Since the awards night in Adelaide, and then Canberra, Kate has said they were both “Two of the proudest nights of my life, and although she was not the National winner, she felt honoured to have been recognised by Australia for her contribution to dementia.” Although her experience was tinged with a personally devastating and initially debilitating negative media experience, the fact she was able overcome it, and continue her work is a perfect example of the reasons people are awarded this prestigious award.
Kate is the current Chair, CEO and a co-founder of Dementia Alliance International, a global advocacy and support organisation, of, by and for people diagnosed with dementia. In 4.5 years, she has taken this from it’s eight founding members, to more than 5500, spanning 47 countries. Diagnosed herself at the age of 49, at that time a working married mother of two teenage sons, she represents the 50 million people estimated to be currently living with dementia, and the projected 152 million people by 2050. There is an estimated 425,416 people with dementia in Australia (Dementia Australia, 2018)
Her work and influence goes well beyond the field of dementia; she is also a role model for many including young men and women. Her books, blogs and appearance on programs like “But You Can’t Ask That” (ABC) and "Dancing with Dementia" SBS have influenced and encouraged many facing illness and adversity. When receiving the award as the SA AOTY, she spoke of her dream to empower others diagnosed with dementia to live with it more positively, rather than to only to go home and die from it. By reading the feedback openly accessible on her website to her regular blogs, and to her books and when she is in the media, it is apparent her work is impacting many thousands of people, with and without dementia. Her blog was archived in the Pandora Collection in the State Library in South Australia and the National Library in Canberra in 2012.
She is the only Australian to be a full member of the World Dementia Council, a Board member of Alzheimer’s Disease International and the SE Asia Mentor to their members, and a Founding member of the newly established Global Rehabilitation Alliance, ensuring dementia is represented, an area she has been advocating for globally for almost nine years. She is currently a member of the High Level Meeting Steering Committee for the United Nations (UN), a member of the Community of Practice for the Meaningful Involvement of People Living with Non Communicable Diseases, a Steering Committee Member of the UN Civil Society Working Group, and a Stakeholder Committee Member of The Worldwide Hospice Palliative Care Alliance.
A humanitarian and activist for human rights in dementia and aged care, she lives herself with dementia, diagnosed aged 49, and remains very involved globally in human rights activism, and empowering others with dementia to live positively. In a recent publication, “Human rights, disability and dementia”, she responded to the WHO “Global Plan of Action on the Public Health Response to Dementia 2017-2025”, the only person with dementia to have done so in a published article. She is currently part of a group working on the draft of the Older Persons Convention at the UN.
Mentored by a global disability academic and activist, Emeritus Professor Peter Mittler, himself living positively with Alzheimer’s for over ten years in the UK, and through collaboration and high level activism, they have ensured dementia is not only listed on the World Health Organisation Dementia Fact sheets as “Dementia is one of the major causes of disability and dependency among older people worldwide (2018)”, but that dementia is being represented and managed as a condition causing cognitive disabilities globally. Kate campaigned for this to be a new category at the WHO mgGAP Forum successfully, and dementia is now listed, along with autism, as a condition causing cognitive disabilities, rather than being categorised (incorrectly) as a mental illness, intellectual disability, or a psychosocial disability.
Kate attended and spoke at the World Health Assembly in Geneva in May 2018, ensuring dementia and palliative care were represented, and then attended and spoke at the 11th Session of the Convention Of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD) in New York in June, again ensuring the 50 million people currently estimated to have dementia were represented.
Since the WHO First Ministerial Conference on Dementia in 2015, Kate has been key to the global advocacy of people living with dementia, and ensuring human rights are embedded into national dementia strategies. Governments invite her to work with them, including Presidents and other high level officials. She works with the WHO and UN, and through a research project that her organisation DAI is a collaborating partner on, she is working in the Low and Middle Income Countries to support Alzheimer’s Associations and researchers to improve dementia care.
Kate has also been a recipient of many other prestigious awards including the University of Wollongong’s Alumni Social Impact Award and one of the 100 Women of Influence in 2016; in 2015 Kate was the Inaugural winner of the Stirling University International Dementia Leader Award and winner as an Emerging Leader in Disability Awareness in the National Disability Awards.
Kate has changed the world view of dementia, especially by refusing to only go home and die from it. Through her activism, publications and research, and her personal determination and perseverance, grief and loss counselling, positive psychology, resilience, optimism, rehabilitation, and other positive interventions for dementia will become common practice.
As a truly powerful and effective activist impacting global change, Kate is ensuring positive change in diagnosis rates, a more positive pathway following a diagnosis, the inclusion of rehabilitation in post diagnostic care, and reducing the stigma, isolation and discrimination. Her work is already improving the care and support for everyone facing dementia, both those diagnosed and their families and friends supporting them.
Finally, Kate says, “If you know someone you believe to be an outstanding citizen, who is contributing significantly to make our community a better place for all, then please nominate them for the 2019 Australian of the Year Award".
Dementia Australia, (2018) Key facts and statistics, https://www.dementia.org.au/statistics
The World Organisation, (2018) Dementia Fact Sheets, http://www.who.int/news-room/fact-sheets/detail/dementia
Nominate for the Australian of the Year Awards www.australianoftheyear.org.au