Outstanding ‘Supporting Diversity’ Achievement Awarded to Volunteers Impacted by Dementia

Victorian Volunteers, Edie Mayhew, living with dementia and her carer and partner of 31 years, Anne Tudor, have been honoured by the Minister for Health Volunteer Awards receiving the Outstanding Achievement by a Volunteer: Supporting Diversity Award.

Edie and Anne, of Ballarat, are tireless advocates for people living with younger onset dementia. Edie was diagnosed with dementia five years ago, at the age of 59. On receiving a diagnosis the couple became involved with Alzheimer’s Australia Vic.

"We are so proud that Edie and Anne’s contribution to raising awareness about younger onset dementia has been acknowledged by receiving this prestigious Victorian award," Maree McCabe, CEO Alzheimer’s Australia Vic said.

"Sharing such a personal story takes incredible courage and they have been prepared to do whatever they can to support other people impacted by dementia and the LGBTIQ community.

"Through these awards such contributions are deservedly acknowledged and they also highlight the power of consumers’ firsthand stories that our politicians need to hear,’ Ms McCabe said.

"We are delighted to have received this award from the Minister for Health. If talking about my story helps others to understand more about dementia, especially those in influential positions, then I will continue to do so," Ms Mayhew said.

"As Edie’s carer and partner, I am brimming over with pride in the way that she has accepted her diagnosis and is committed to helping others, by talking openly about what it is like to live with dementia.

"We do not hear the voices of people living with dementia enough and I thank Alzheimer’s Australia Vic for providing these opportunities for me to support Edie and for us to contribute and make a difference," Ms Tudor said.

Since 2011 Edie and Anne have been members of the Alzheimer’s Australia Vic Younger Onset Dementia Reference Group, travelling to and from Ballarat, where they provide feedback on the development of programs, resources, present at conferences, are engaged with activities and, willingly share their story to media and politicians.

They also represent Victoria’s consumers on the Alzheimer’s Australia National Dementia Advisory Group.

Through speaking at regional, national and international events they have reached thousands and, to the media, have reached audiences, potentially, in the millions to increase understanding and reduce stigma.

Edie and Anne’s volunteer activity has included:

• Sharing their story at the National Younger Onset Dementia Consumer Summit in 2013 to 300 delegates and national media. The Summit Communiqué advised the Federal Government and led to the introduction of the world-first, $20 million per annum Younger Onset Dementia Key Worker Program.

• Consulting on the development of the Younger Onset Dementia Online Forum which provides a place where younger people with dementia and their loved ones can access peer support online.

• Presenting at the 2015 Alzheimer’s Disease International(ADI) Conference in Perth, and also in Budapest at the April, 2016 ADI conference.

• Fearlessly sharing their journey with the media on national and regional network news, most notably The Guardian and in September 2015 on ABC 7.30.

• Participating in the 2015 and 2016 National Consumer Summits both of which have contributed to the set of recommendations for a National Dementia Strategy, which have been presented to federal parliamentarians.

• Participating in the national media campaign, ‘No Longer a Statistic’ in 2015 which created awareness of the significance of younger onset dementia in Australia and directly influenced policy decisions regarding how younger onset dementia fits in to the National Disability Insurance Scheme.

• Volunteering for a study conducted by researchers at La Trobe University, documenting LGBTIQ people’s experiences of dementia and their needs.

"Edie and Anne have made an extraordinary contribution towards increased public awareness of dementia.

"By drawing attention to dementia-related issues they have helped shape how state and federal governments support people living with dementia.

"I wish to thank Jill Hennessy MP, Minister for Health for her support of our volunteers and the work of Alzheimer’s Australia Vic," Ms McCabe said.

For more information about volunteering at Alzheimer’s Australia Vic, call the National Dementia Helpline on 1800 100 500 or visit vic.fightdementia.org.au/vic/support-us/volunteer-for-us.

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