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.
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.
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.
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.
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.
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.
Jason is Head of Dementia Practice and Innovation at Alzheimer’s WA. 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.
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.