By India Lloyd
Kiama is one of the first communities in Australia set to become dementia friendly, and hundreds of people turned out to a public lecture last week to find out exactly how the initiative will be implemented.
Research and Action to Pioneer Dementia-Friendly Communities and Organisations, a collaboration between the Global Challenges Program and Alzheimer’s Australia, aims to help the Kiama community respond to the challenges that stem from the debilitating illness of dementia.
Kiama Anglican Church was full on Tuesday, September 16, the crowd a mixture of ages, as members of the community listened to experts in the field of dementia and people living with dementia share their experience and vision for the region.
Steve Milton was the keynote speaker at the Alzheimer’s Australia-hosted event, which explored how to reduce stigma and change community attitudes towards dementia, and how dementia-friendly communities can have a positive impact on society as a whole.
Steve is one of three directors of Innovations for Dementia, a not-for-profit community interest company in the United Kingdom. The series of public lectures, which are being held throughout Australia, coincide with September’s Dementia Awareness Month.
Kate Swaffer, a blogger, author and former nurse who was diagnosed with early onset dementia, opened the public lecture and spoke eloquently about her experiences with the disease and her work as a dementia advocate.
Kate told the crowd about the “devastating impact” that a dementia diagnosis has on a person’s social life. She said being “respectful and kind”, which we should all aim to be in everyday life, was the first step in helping those with dementia to feel welcome in a community.
“Stigma and discrimination towards dementia are still very much alive in many communities,” said Kate, a consultant for Alzheimer’s Australia’s dementia-friendly communities concept.
“Improving access to social opportunities and employment for young people diagnosed with dementia is essential to creating a dementia-friendly community. And every dementia-friendly community will look different.”
Kate shared anecdotes about how life with dementia – such as constant reminders from her family to take her medication – and said the compassion she has gained from dealing with the disease would have made her a better nurse.
Veda Meneghetti, a talented musician from Kiama who was diagnosed with logopenic progressive aphasia, a form of dementia, joined Kate on stage to share her experiences – through song – of life with the disease. It was a poignant moment and a unique way of expressing the impact that dementia has had on her life, her career and her perspective.
Steve Milton was the next speaker on stage and instantly captivated the crowd with his down-to-earth manner and enthusiasm for the dementia-friendly communities concept.
Steve, whose father, grandfather and grandmother all had dementia, told the crowd that in order to create a sense of compassion and understanding for the disease “we must change the narrative around dementia”.
“It is a disability and it must be viewed as such,” he said. “Society must accommodate people with dementia in the same way that it accommodates people with disabilities and people with dementia must insist on their rights as a disabled person.”
He said communities throughout the United Kingdom were finally realising the benefits of adapting to people with dementia and there are economic, as well as social and moral, benefits to applying the same way of thinking in Australia.
His family experience with dementia provided Steve with strong insight as to how we should be treating those who are diagnosed with the disease, and how they can continue to embrace life despite their diagnosis.
“People with dementia want to carry on with their lives,” he said. “They want to catch the bus, and go to the grocery store and the pub. They don’t want to go into care.
“If we can prevent people with dementia from going into dementia care at an early age by just five per cent, we can save 55 million pounds each year,” Steve said. “In the UK, there are 63 communities that are working towards becoming dementia friendly. People with dementia must be included in these conversations.”
University of Wollongong researcher Dr Lyn Phillipson, investigator on the project to develop a dementia-friendly community in Kiama, was the last speaker at the public lecture. Dr Phillipson told the crowd about the multidisciplinary project, which brings together researchers from the fields of medicine, social science, and engineering, and how it will impact residents of Kiama.
”We want to see Kiama through the eyes of people who have dementia,” said Dr Phillipson, from UOW’s Centre for Health Initiatives. “What is manageable and what is difficult about living in Kiama. Are there any dementia hot spots? How can we make life easier for those with dementia?”
Dr Phillipson said the far-reaching project would focus on such day-to-day items as banks, grocery stores, cafes, street signs, transport systems and hospitals. The team of UOW researchers is working with people in the Kiama community to provide a holistic approach to creating a dementia-friendly place and promoting greater understanding of the disease.
The event was a huge success and helped the audience to grasp how becoming dementia friendly will make Kiama a better place to live.
The last word, however, belongs to Steve Milton, who believes such public conversations are essential to creating empathy in the community and ensuring no stone is left unturned in the bid to create a world that is friendly to dementia sufferers.
“People with dementia are at the heart and start of all our conversations around becoming dementia-friendly. Dementia might be life changing, but it doesn’t have to be life ending.”