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International Dementia Conference
International Dementia Conference
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Jane Thompson

Advocate for public involvement in dementia research

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Dr Jane Thompson is an advocate for public involvement in dementia research. She has a professional background in research (BSc (Hons), MSc, PhD). Her lived experience as a carer of her husband, Dr Alan Newsome, who died of Alzheimer's disease in 2007 led to her interest in becoming actively involved in dementia research as a public contributor and her passion to improve the experiences of those affected by dementia. 

Alan was diagnosed when he was 69 and Jane was 55; their youngest 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 is such a cruel disease to watch someone experience” she says, “and it was really difficult navigating all the services”. “Supporting a person with dementia requires skills and strategies which we don’t all naturally have. It is hard work. Carers need all the help and support that they can access” she says. “You need to have an enormous amount of patience, and adapt continuously as the disease inevitably progresses”, she advises. Her overall sense at the end of it all was that “surely it shouldn’t be so hard”.

It is this belief that took Jane’s life in a completely unexpected direction. “I spend a lot of my time now advocating for public involvement in dementia research… this was never my life plan”. “Nor did I expect to travel the later part of my life alone” she says. 

Jane was a founding member of the former Alzheimer's Australia's Consumer Dementia Research Network (2010-2015) which aimed to support people with lived experience of dementia to have an active role in dementia research. She was involved in the NHMRC Cognitive Decline Partnership Centre (2011-2019) and contributed to the development of their Australian Clinical Practice Guidelines and Principles of Care for People with Dementia and the companion guide for the public, Diagnosis, Treatment and Care for People with Dementia. She was a member of the Dementia Australia Research Foundation Scientific Panel (2014-2019) and the Board of the NHMRC National Institute for Dementia Research (2015-2020). 

Jane recognises the importance of research to improve our understanding of dementia and dementia care. She wished she had known about opportunities to participate in research studies or be involved in the research process when she was caring for her husband, but no one approached them to do this. She therefore welcomes the new StepUp for Dementia Research service and is involved as a member of its Public Involvement Panel. She is heartened at the volume of dementia research being done, the dedication of the people doing it and the impressive early career researchers. Jane would “really encourage people to participate in research studies – and also to consider contributing to the research process more broadly to help ensure that the focus is on areas most likely to impact the lives of those whom the research is about.” 

Jane is currently involved in several research projects as a Chief or Associate Investigator and is:

  • Member, Executive Advisory Group of Capacity Building in Care Research Flagship Project; Dementia Centre for Research Collaboration: Care and Consumers Hub; Queensland University of Technology 
  • Member, Consumer Buddy Program, Walter and Eliza Hall Institute of Medical Research 
  • Chair of the eQC (evaluating Quality Care) Patient and Carer Advisory Board in the Centre for Health Services Research at The University of Queensland

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