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Category: Volunteer stories

StepUp for Dementia Research is a BRIDGE between people with lived experience and researchers

Thursday, April 29th, 2021

I first became aware of dementia research at an Alzheimer’s Australia conference some 10 years ago, when a Consumer Dementia Research Network (CDRN) was formed. There were about 25 people, with Glen Rees and his team. Many were people living with dementia, and others were, like me, carers/enablers. I was totally speechless, as I did […]

Jane’s experience caring for her husband with dementia

Friday, April 23rd, 2021

Jane Thompson, a member of StepUp for Dementia Research Public Involvement Panel, appeared on an episode “I still do” of the SBS program Insight.  Jane shared her story about her marriage and her experience caring for her husband with dementia. Please click this link to hear her interview:  The Canberra Times also posted her […]

Dennis Frost

Why do we need StepUp for Dementia Research? Dennis’s story

Tuesday, April 13th, 2021

In 2017 I participated in the 32nd International Conference of Alzheimer’s Disease International in Kyoto, Japan. There, I heard a presentation on Join Dementia Research, a UK’s national service which allows the public to easily take part in research opportunities and assists researchers to effectively manage their recruitment effort. Despite the difference between the UK […]

Meet Val Fell

Friday, March 6th, 2020

Val is 91 years old.  Earlier this year, she was awarded the City of Wollongong Senior Citizen of the Year for her volunteering with Parent and Citizen Associations, Eisteddfod, the Council On The Ageing, and Dementia Australia. From Statistician to Dementia Volunteer Val says she used to describe herself as a “retired mathematics teacher who […]

Meet Bobby Redman

Monday, February 10th, 2020

Bobby is a retired psychologist.  She lives alone and has a daughter and three grandsons, who she describes as “the centre of my world”. Diagnostic Confusion At the age of 66, Bobby was given a provisional diagnosis of mild cognitive impairment or frontotemporal dementia after experiencing a range of symptoms, including “a noticeable change in […]

Meet Val Schache

Wednesday, February 5th, 2020

Val is nearly 68, a mother of three, a grandma of eight and a wife of 48 years. Retired now, Val was a farmer and rural physiotherapist. She holds claim to being one of the first acupuncturist physiotherapists in the public health system in Australia in 1988. A “Can-Do” Lady The diagnosis of dementia came […]

Meet Ron Sinclair

Monday, July 15th, 2019

Ron has been involved in advocating for Australians impacted by dementia for over 20 years.  He was the inaugural chair of the first national consumer advisory committee, and the consumer dementia research network established in 2010. Both Ron’s parents passed away with dementia, as well as his first wife, Diana, 13 years ago.  He explains […]

Meet Eileen Taylor

Friday, May 3rd, 2019

Eileen Taylor is a wife of fifty years, a mother to two sons and a toy poodle, and a grandmother to five. Eileen was a counsellor before she retired shortly after learning, at aged 59 years, that she has the gene for Alzheimer’s disease. Eileen describes living with dementia as having “my good days and […]

Meet Jane Thompson

Monday, March 11th, 2019

The Dementia Experience should not be so Hard Jane Thompson’s husband, Alan Newsome, was diagnosed with Alzheimer’s disease when she was in her early fifties and he was 69; their son was in his last year of school. Alan died within four years of the diagnosis. Jane describes the whole experience as exceptionally challenging. “It […]

Meet Danijela Hlis

Monday, February 18th, 2019

Danijela has dedicated her last ten years to supporting people living with dementia and of culturally and linguistically diverse backgrounds.  Fluent in French, English, Slovenian and Italian, “I see the sparkle in their eyes when I speak to them in their mother tongue”, she says. Painful Memories Forgotten Born in Slovenia (then Yugoslavia) 69 years […]

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