To create a truly dementia-friendly community, one first step might be to create a dementia-friendly University. It was from these musings that the ‘Dementia Enabling University Strategy’ was born.
The Dementia Enabling University Strategy, funded by the NSW/ACT Dementia Training and Study Centre (Department of Health) involves working with interested academics across law, media, social sciences, public health, engineering, and psychology disciplines to create more opportunities for students to acquire the knowledge and inspiration they need to develop better ways to enable people with dementia to lead full lives.
The brainchild of National Health and Medical Research Council - Australian Research Council Dementia Fellow, Dr Lyn Phillipson and NSW/ACT Dementia Training Study Centre Director, Professor Richard Fleming, the Dementia Enabling University Strategy being piloted at the University of Wollongong aims to deliver dementia education at an undergraduate level, in a range of disciplines, to encourage the next generation of professionals to think about how they can address the challenges faced by people living with dementia and those supporting them.
“For communities to be dementia-friendly they have to be designed better from the beginning. We also need business people, planners, lawyers, accountants, marketers, designer, engineers - the whole kit and caboodle, to be thinking about the challenges faced by people living with dementia,” Dementia Enabling University Strategy project leader, Dr Phillipson said.
“I thought, as a University we can do something about teaching all our undergraduate students something about dementia (not just health professionals) to get them thinking about how their discipline can support people with disabilities and dementia.”
The pilot project at the University of Wollongong, the first of its kind in Australia, includes guest lectures, project-based and internship or placement opportunities, assessment tasks and tutorial content in the disciplines of engineering, media and management, accounting, marketing, law and public health.
The Dementia Training Study Centre funding has assisted staff to build relationships with people with dementia and dementia experts and also to develop teaching resources and content, some of which was incorporated in subjects from May this year.
Dr Phillipson said the backing of the project by the Dementia Training Study Centre, their brokerage of dementia experts and the funding for research assistants, tutors and preparing course material really helped encourage University of Wollongong colleagues to get on board.
“It was interesting to see how easy it was to support our academics to do something about dementia. Those that got involved were quick to recognise the significance of the issue and the relevance of the content for their students,” Dr Phillipson said.
World Dementia Council member, University of Wollongong PhD candidate and Dementia Alliance International co-founder, Kate Swaffer has been working on the project, sharing her experience of living with younger onset dementia with academics and students and assisting in developing dementia specific content.
Diagnosed with younger onset dementia while studying at the University of South Australia, Kate was doing two undergraduate degrees (a Bachelor of Arts and Psychology), when she discovered the incredible disability services and support provided to any student with any disability, to achieve their personal goals, were also available to her.
Kate kept studying as her form of “neuroplasticity brain training” – which she said was a far more meaningful activity to her than joining an art class through support provided by service providers.
“In a sense, University became my ‘day respite’. I recommend all people diagnosed early in their dementia to seek and keep doing the activities they love, in essence, to reclaim their pre-diagnosis lives. This includes work or volunteering, if that is what you would like to do, with as much support as needed to remain as independent as possible, which is what every other person with disabilities expects and receives,” she said.
For Kate, the real potential of the Dementia Enabling University Strategy lies in the possibility to embed dementia knowledge and awareness into all disciplines, and not just educate students on the relevance of learning about dementia, but how their particular study stream may be able to positively impact the lives of people with dementia in the future.
“Design or engineering students who not only learn a little about dementia, but also why their design needs to be not only funky but functional and dementia enabling, will automatically become part of making our communities dementia enabling,” Kate said.
“Educating students, who are our future, I feel is the right place to be working.”
Kate’s first lecture to media and journalism students a couple of months ago, gave them a brief introduction to dementia, a little detail about what it is and the local and global statistics.
“We looked at how dementia is represented in the media currently, and how negative and disabling that is, and the alternatives,” she said.
“I referred them to the Dementia Australia Dementia Language Guidelines, which currently are still the most comprehensive ones globally.”
Kate hopes to start working with some journalism interns soon on some projects specifically related to supporting the work of Dementia Alliance International.
“That way, they get to add that work onto their CV’s, as it will be real work, not assignment based only, and also learn more directly not just about dementia, but from people living with dementia. It is a unique opportunity for us all.”
For Kate, embedding dementia training, awareness and understanding in undergraduate courses is a strategic “next step” for the Dementia Friendly Communities initiatives and will go a long way toward reducing stigma, discrimination and isolation, and improve the quality of life for more people with dementia.
“We need shopping centres, street signs, gardens and parks, and community clubs, shops and restaurants who also accept the diversity and disabilities of people with dementia, rather than being fearful of us,” Kate said.
“These initiatives must be about access, communities that enable people to live well, and communities that embrace people with dementia rather than people who cross the road to avoid talking to us.
“This is a hugely important next-step in this work, and we have already had universities from overseas asking to collaborate with us on this work.
“I am truly excited by this project, as I believe it will create great change in the next generation that so far we have been struggling with,” she said.
To find out more about this project, please contact Dr Lyn Phillipson.