Locals were invited to participate in a Dementia Community Education session early December at the Uniting Church Hall in Gerringong. This event was being by the "Dementia Inclusive Kiama Project" which seeks to provide comprehensive awareness and understanding of dementia. This session was especially valuable for those seeking insights into supporting individuals living with dementia.

The education session, designed and delivered by people living with and alongside dementia, is a key component of the ongoing "Dementia Inclusive Kiama Project." Despite challenges, the project, in collaboration with the University of Wollongong, Dementia Australia, and until earlier this year Kiama Council, has been making significant strides since September 2014. It has a rich history of success and manages to continue despite Council pulling out of the project at the end of the last financial year.

 The project was initially founded on research activities led by A/Prof Lyn Phillipson from the University of Wollongong. The research sought to identify features in the physical, social, and service environments affecting the experiences of people living with dementia in Kiama. Notably, the project has received two national and one international award for its impactful work in raising awareness and advocating for the rights of people living with dementia.

Research activities included interviews and mapping activities with local people with dementia and their supporters and participating in the development and testing of an audit tool to assess spaces in Kiama. A survey of 123 local community members about their knowledge of and attitudes towards dementia was conducted, along with a survey of 22 organisations that service people living with dementia in Kiama.

These activities helped to identify features of the physical, social and service environments which help or hinder the experiences of people living with dementia. The surveys found that most (74 per cent) knew someone with dementia and the vast majority (91 per cent) were happy to spend time or have a conversation with a person with dementia. Despite this, only around half (51 per cent) considered themselves to have a good understanding about the condition. Some people had low expectations of interactions with people with dementia, for example over 30 per cent agreed that complex and interesting conversation could not be expected from most people with dementia.

The project's Dementia Alliance and the Dementia Advisory Group (DAGS), have been instrumental in implementing a Kiama Dementia Action Plan. The Alliance, comprising individuals and stakeholders, is responsible for developing and executing dementia-friendly activities, while DAGS, exclusively composed of people with dementia and their supporters, oversees and develops additional activities.

Nick Guggisberg, helping to organise the education sessions, brings a long history and extensive experience in community development to the project and a personal connection to the project, with family members who have/are living with dementia.

Dennis Frost, who presented at the forum, shared his personal journey with frontotemporal dementia highlighting the misconception surrounding the condition, emphasising that having dementia can be liberating and doesn't necessarily equate to immediate incapacity. The education sessions, delivered by people with dementia and their care partners, addressed not only the symptoms but also the social implications and stigma associated with the condition.

Dennis recalls feeling happy when he received his diagnosis of frontotemporal dementia 10 years ago, at age 59. “I finally had an explanation for things that were occurring” he says. He adds that his son’s reaction was one of concern; to him his father had just been given a terminal illness. Dennis says, “the path of dementia is not what society sometimes has us believe”, and his son’s somewhat understandable expectation “that I would wind up incapable of anything very quickly”, changed with time.

Rock musician Veda Meneghetti grapples with a rare form of dementia, impairing speech, reading, and comprehension. In a compelling testament to the urgent need for reform in aged care, her devoted carer, Lynda Henderson, played a pivotal role by providing vital insights to the Royal Commission. This underscores the pressing importance of advocacy to address the challenges within the aged care system, particularly as it relates to dementia.

This education session is delivered by and for people with dementia and their care partners. It is community work from the ground up. They address the symptoms of living with dementia and the social implications and stigmas such as referring to people living with dementia as "sufferers or dementia people" that often go with it. People tend to withdraw away from people living with dementia. This shunning causes isolation which is opposite to their need to participate in community and live a higher quality of life.

For further information on this subject please visit www.dementia.org.au