An award-winning project to create an inclusive and supportive community for people with dementia and their families will be included in a study of what makes dementia-friend communities.

Associate Professor Lyn Phillipson

Dementia Australia has awarded a grant of $365,000 over two years to Associate Professor Lyn Phillipson from the University of Wollongong to gain more insights into what works and what doesn’t when creating dementia-friendly communities.

Professor Phillipson is one of the driving forces behind the Kiama project, a dementia-friendly community on the NSW south coast which began in 2014 and is a partnership between the University of Wollongong, Alzheimer’s Australia and Kiama Municipal Council.

The project won the Excellence in Community Partnerships Award at the 2016 National Disability Awards and also won an award at the 2016 National Local Government awards in the Disability and Access Inclusion category.  

Her work will use evidence from a series of in-depth case studies, including Kiama.

Lack of data

Although dementia-friendly communities have been promoted as being effective, there is a lack of available data to test this, Professor Phillipson told Community Care Review.

“There is currently a knowledge gap about how community environments can support people with dementia to live well,” she says.

“This grant money will help me to work with local communities who have been trying to make their communities more ‘dementia friendly’, to understand more about what they learnt about what works and for whom and where.

“It would be great to be able to collect data that can be used by local communities to promote social and environmental change in their local neighbourhood that will benefit people living with dementia and their family members and care partner.”

Carers at the heart

One of the most important things research has shown so far is that people with dementia and their carers have to be at the heart of creating a dementia-friendly community, Professor Phillipson says.

“One of the most important things we have learnt in our research so far is that people with dementia and their carers have to be at the heart of creating a dementia-friendly community.”

Associate Professor Lyn Phillipson, University of Wollongong

“They are the ones that know what works and doesn’t work in their local area, and we have learnt that if we let them determine the priorities and if they are supported to be involved in creating the solutions then things work best.

“I think in this way, dementia-friendly communities have learnt what disability advocates have been saying for a long time  – ‘Nothing about us, without us’.”

Social inclusion

Social inclusion is also important to the wellbeing of every human being, Professor Phillipson says.

“Being able to take part in community activities, enjoy community environments, such as parks, galleries, shops, and connect with other people in our neighbourhoods is part of what helps us all to live well.

“It is no different for people with dementia, except that social stigma and sometimes actual physical barriers in community environments unfortunately get in the way.”

“Being able to take part in community activities… is part of what helps us all to live well.”

Associate Professor Lyn Phillipson, University of Wollongong

The best kinds of communities for people with dementia are those that understand dementia and have overcome their fear about it.

“Communities that design environments that are accessible for people with dementia – including promoting good signage and wayfinding,” Professor Phillipson said.

Kiama project

Professor Phillipson says the town of Kiama was chosen because of its proximity to the university and the council’s commitment to becoming an aged-friendly town.

She says much can be learnt from how the project was set up.

“It has always put people with dementia and their carers at the centre of things – and so that has helped us to adapt and change as they have.

“We have also learnt that we can’t make a community dementia friendly unless the formal services and supports are also there to assist people as their needs increase.

“So, this is really important and highlights that grass roots community movements also need the support of well-functioning care at home and residential care services to succeed.”

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