Research volunteers are at the centre of StepUp for Dementia Research, which was developed in close consultation with members of the public who represent people living with dementia, their carers and their loved ones.
The Public Involvement Panel (PIP) is consulted as a sounding board to ensure that StepUp for DementiaResearch addresses the needs and points of view of the members of the public who will engage with the service. PIP members were consulted on the naming and branding of the project, as well as the web content, and continue their role in advising on the messaging and ways to engage a wider community. Members of the PIP serve on a volunteer basis.
Our sincere thank you to our PIP members for their continuing guidance and counsel.
Bobby Redman is a retired psychologist and a dementia advocate, living with fronto-temporal dementia. Bobby sits on the Dementia Australia Advisory Committee; the Central Coast Dementia Alliance Committee; and a number of research steering committees.
Dennis was diagnosed with frontotemporal dementia at age 59. In 2014 he became involved in the Dementia Friendly Kiama Pilot and was elected chair of the Advisory Group. Since then he has co-authored a paper on the findings of the Kiama Dementia Friendly project, and presented on dementia and the Kiama dementia friendly project at national and international conferences.
Eileen Taylor lives positively with young onset familial Alzheimer’s Disease dementia and is a passionate activist and advocate for people living with dementia. A retired social worker, Eileen has been actively involved in dementia research since her diagnosis. She is a co-founder of the Dementia Awareness Advocate Team (DAAT), member of Dementia Alliance International (DAI) member of the Redlands Coast Dementia Community (RCDC) successfully campaigned to make Redlands a Dementia Friendly City.
Elaine is a former carer of person living with dementia. She is now strong advocate for those living with dementia and for research in to ways to make the lives of those people better.
Elizabeth is a business executive who is passionate about dementia. She is the Director of Happytel Retail Group. She holds a Bachelor’s degrees in Economics and Laws at UNSW and was admitted as a lawyer in NSW. She also holds a MBA from the London School of Economics, New York University Stern, and HEC Paris. She is also a graduate of the Australian Institute of Company Directors. Dementia is very close to her heart as it has affected many of her family members, as well as her community.
Dubhglas (Dubhg) Taylor is a retired social worker psychotherapist / educator who now partners with people living with dementia and Dementia Service Organisations to raise awareness and advocate on dementia issues. Dubhg is a co-founder of the Dementia Awareness Advocate Team (DAAT), and a Dementia Advocate with Dementia Australia. He is Chair to the Redlands Coast Dementia Community (RCDC). Dubhg is care partner to his wife, Eileen Taylor.
Jane cared for her husband who died of Alzheimer’s disease in 2007, an experience which motivated her to become an advocate for public involvement in dementia research.
Tom has Parkinson disease and Lewy body dementia. He’s an advocate for Alzheimer’s WA and a member of the Parkinson and Lewy Body Dementia associations. He is also the conference president for St Vincent de Paul Society.
Val Fell is a retired statistician, former carer for her husband, Ian, who passed away in 2013 (Alzheimer’s). She is a dementia advocate for Dementia Australia and a peer educator with COTA and has been facilitating a support group for carers of people with dementia for 6 years in the Illawarra area. Val has been collaborating with researchers from University of Wollongong since 2008 and is currently assisting with projects at a number of other universities undertaking dementia research.
Val Schache is now a REAL expert with dementia, Class of 2015. She was previously an allied health professional working with dementia clients. Since 2004 she has also been the official carer for her husband. She continues to live exuberantly.
In August 2019, at the age of 59, Bill was diagnosed with Younger Onset Alzheimer’s Disease. He has a keen interest in learning how to lead a rewarding and fulfilling life. As a result, Bill has returned as a volunteer surf lifesaver, and he now competes in masters Swimming, Pool Rescue and Surf Lifesaving Championships. Besides being a member of the Advocate Program at Dementia Australia and Dementia Alliance International, Bill also speaks at national and international conferences as a way of raising awareness about dementia, focussing mainly on post diagnostic care and support via his holistic approach to life.
Imelda cared for her husband through his journey with young onset Anzheimer’s disease. Since his death two years ago she has continued her activity as a Dementia Advocate for Dementia Australia.
Jason has 30 years clinical, educational and managerial experience in the field of dementia care and is passionate about improving the lived experience of dementia for those living with it and those who support them. He has responsibility for research strategy and establishing evidence based services and emerging sector partnerships.
Mabel‘s mum had vascular dementia and her dad had Alzheimer’s disease. Both of them passed away in 2014. Since then she has committed to become a Dementia Advocate for Dementia Australia.
Danijela Hlis is a writer and one of many Dementia Australian Advocates, passionate in promoting inclusion, and increased involvement and participation of all Australians (CALD, ATSI etc.) in dementia research. She is currently involved in 11 national research projects and regularly presents at dementia forums and conferences.
