Dementia Dispatch Issue 02, November 2015

A Dementia friendly Australia, or are we? 

“It’s our responsibility to strengthen the links of the community, otherwise we’re taking away the identity of people with dementia.” Professor Richard Fleming.   To see the environment through the eyes of someone who is living with dementia is the only way to create dementia friendly communities. Professor Richard Fleming spoke to Alzheimer’s Australia in Canberra this month about shifting the environment to help explore the design principles that facilitate dementia friendly enabling environments.

Shifting Australia’s culture to better understand the environment for people with dementia is one of many challenges faced in today’s society. Professor Fleming emphasised the importance of not just shifting a culture but shifting attitudes within the broader community, including in acute, residential, community and disability care settings.  His research demonstrated that when people with dementia have a sense of belonging and feel valued within their own community, it has a profound impact on their quality of life.    

The Dementia Institute is developing a model to engage consumers in dementia research and better connect research outcomes with improved quality of life for people with dementia and their carers. Consumers provide the expertise of the lived experience of dementia by partnering and co-design programs of research, service solutions and approaches to the way consumers live with care so we can better understand how to develop a coherent and collaborative model to achieve the right outcomes. 

The Dementia Institute Team

Meet the Expert Advisory Panel

The Dementia Institute Secretariat is advised by its Expert Advisory Panel. The Panel provides the dementia expertise to guide implementation of Dementia Institute priorities and ensure delivery of government objectives.

The panel includes:

Chair, Professor John McCallum, Director of the Dementia Institute; Professor Kaarin Anstey; Professor Annette Dobson; Dr Eleanor Flynn; Professor Jürgen Göetz; Ms Louise Heuzenroeder; Dr Stephen Judd; Dr Tammy Kimpton; Professor Ralph Martins; Professor Colin Masters; Professor Dimity Pond; Dr Mike Rungie; Professor Perminder Sachdev; Professor Graeme Samuel; Professor Peter Schofield; Dr Bernie Towler; Professor Robert Williamson; and Mr John Doull.

With such a diverse group of people, the panel will bring a range of expertise in discovery, biomedical, and clinical research; public and allied health, social, behavioural and economic research; health and aged care service delivery; consumer issues; business management; research translation and commercialisation; and government policy and public administration.

Diagnosed with dementia just 11-months ago, panel member Mr John Doull will provide invaluable insight and perspective of what life is like for people living with dementia.

John Doull’s story

Each week, there are more than 1,800 new cases of dementia in Australia; approximately one person every 6 minutes. In January this year John became one of the many new cases diagnosed with dementia.

“I knew my life was going to change. I’m comfortable with what I’ve got but I don’t know what my biggest fear is yet having dementia.”

“I’m not going to die tomorrow, it’s a disease you can live with for ten to twenty or thirty years. I’m hoping we would have found something to cure the disease by then.”

Dementia has become the second leading cause of death in Australia and there’s currently no cure. The debilitating disease causes a progressive decline in a person’s functioning, including loss of memory, intellect, rationality, social skills and physical functioning.

With the support of the Australian Government committing $200 million to dementia research, it means Australian researchers can continue to be part of a world conversation to find prevention methods and discover new therapies to treat dementia.

“My message to all those researchers that have recently been given funding for dementia research is I’m hoping that one or two or three or four of you really find a solution. If not to stop dementia in its tracks but slow it down more.”

As one of the Expert Advisory Panel members, John will provide consumer advice and recommendations on priorities and encourage collaboration opportunities which help link researchers to consumers.

“Being on the Expert Advisory Panel means I can share what it’s like to have dementia, I hope I can provide invaluable information so there’s a better understanding of what it’s like for people living with dementia to some extent, and to share my wife’s experience as my carer.”

“I know my life was going to change when I was diagnosed but my wife didn’t realise that her life was going to change more.” 

Losing the ability to communicate can be one of the most frustrating problems for people with dementia and can add to the difficulty of maintaining professional and social relationships. However, dementia friendly environments that encourage participation help to reduce the risk of social isolation.

“Through some community based organisations in Canberra there’s support for people living with dementia, encouraging them to participate in activities like painting, woodwork, trips to the art gallery, and it gives people something to do to feel like they’re part of the community, rather than sitting at home.”

“I’m lucky because I have my walking group where we walk together every week with about 10 other people living with dementia. We also visit the art gallery. We all look at art differently, we all have dementia at different levels, we have our own way of looking at things but we have a ball and we all love it.”

“I’m taking every day as it comes, having fun. I still have a lot of life and I just want to enjoy it.”

The Board

The Board comprises of eight professionals that bring an array of experience to the Dementia Institute. The Board was established by Alzheimer’s Australia Ltd. to provide governance and oversight for the Dementia Institute. They include Chairman of the Board, Professor Graeme Samuel, President of Alzheimer’s Australia; Ms Samantha Baillieu; Dr Martin Cross; Dr Penny Flett; Mr Richard Grellman; Dr Jane Thompson; Professor Robert Williamson; and Professor John McCallum, Director of the Dementia Institute. 

In the media

The Australian Government recently announced $2.6 million to fund two major Australian dementia studies which will be part the European Union Joint Programme for Neurodegenerative Disease.

With more than $80 million in dementia research funding now announced by Government including $35.6 million for NHMRC Dementia Research Team Grants, and $43.7 million in funding for the NHMRC-ARC Dementia Research Development Fellowships, the Dementia Institute aims to make a significant contribution to the international priority set by the World Dementia Council in achieving a 5 year delay in the onset of dementia by 2025.

The Institute’s media releases