Opinion Pieces

CENTRAL COAST DEMENTIA ALLIANCE DEMENTIA CLINICAL FORUM

May 09, 2019

OPENING ADDRESS FOR THE CENTRAL COAST DEMENTIA ALLIANCE

DEMENTIA CLINICAL FORUM

THE ENTERTAINMENT GROUNDS, GOSFORD

THURSDAY, 9 MAY 2019

 

Thank you for the invitation to speak at the first Dementia Clinical Forum on the Central Coast.

I would like to begin by acknowledging the traditional owners of the land on which we meet, the Darkinjung and Guringai People, and I acknowledge their elders past, present and emerging.

I would like to acknowledge Richard Nankervis, CEO, HNECCPHN, Dr Tomiko Barrett, Geriatrician, CCLHD, Bobby Redman, Dementia Advocate and all the wonderful members of the Alliance.

I am proud to be patron of the Central Coast Dementia Alliance as it achieves a growing list of “firsts” for those living with dementia in our community, their families, friends and carers. Today marks another first for the Alliance and the organisations they represent. It is encouraging to see so many health practitioners here today to learn more about this locally, indeed nationally-significant, public health issue.

I wish to congratulate the Central Coast Dementia Alliance Steering Committee for achieving the official recognition of its Community Action Plan by Dementia Australia.

This recognition means the Central Coast community has earned the status of ‘working towards dementia-friendly’ and Dementia Australia has officially included the Central Coast on its map of dementia-friendly communities.

It is a significant milestone for the Alliance particularly given the group responsible for assessing applications is made up of people living with dementia.

Thank you for taking the time to attend this clinical forum. We have probably all, as health practitioners, read a great deal about the emerging significance of Dementia as a public health issue. It was not until as a granddaughter and daughter helping to care for my grandma and father that I truly understood Dementia.

My Dad, who passed away in 2018, was diagnosed with young-onset Alzheimer’s Disease when he was 63. Being with my Dad when he was diagnosed with Younger Onset Dementia will always stay with me. Helping care for my Dad during the six years turned many of my professional opinions about the health system completely on their head.

It inspired me to become involved in the formation of the Central Coast Dementia Alliance, this dedicated group of health professionals, service providers and community supporters who are committed to making the Central Coast a dementia-friendly community.

When I was elected to Parliament my Mum Barbie made me promise that I would do everything I could to support carers in our community. That is why I held the Central Coast’s walk in my shoes carers’ conference for the 30,000 people in our community who care for someone every day.

My family’s experience inspired the Central Coast’s first annual Grant McBride Memory Walk and Jog at Long Jetty. Hundreds of locals walked and jogged to raise money for Dementia Australia and on one morning we raised $21,000.

Many who participated in the carer’s conference and the Grant McBride Walk and Jog had personal stories about dementia that touched me deeply. Those stories reinforced my view that all health practitioners, every one of us involved in caring for those living with dementia, have much to learn from those with lived experience.

In terms of improving care for those living with dementia, I believe as practitioners, we need to start from a place of compassion and empathy. The best way to achieve that is to engage with those within our networks who have lived experience of this disease.

When my Dad was diagnosed I had been a pharmacist for almost 15 years and worked in mental health for 10 but neither my background nor my training prepared me to be a carer.

Suddenly the health system I thought I knew and understood became complex, complicated and daunting and, like so many others, I couldn't find the front door. It took me months to find a service at Wyong Hospital and I had worked there for 10 years. And, I only found it through the mother of a friend of my brothers who worked there.

My Mum Barbie was my Dad’s primary carer and I have learned a lot from her through my Dad’s experience. Improving public health is one of the main reasons I do this job. I believe there are many ways to improve the lives of those living with Dementia. One of those ways is to ensure we have Dementia-friendly communities and spaces within our communities so that those living with Dementia can stay connected with family, friends and with place, as much as possible.

Thank you for the opportunity to speak today.

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