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Byron Shire
April 15, 2021

Dementia not just an older person’s disease

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I am writing to you on behalf of Alzheimer’s Australia NSW – the peak body and charity that assists people living with all types of dementia, their families and carers.

Right now there is a belief in the community that dementia is an older person’s disease. This is simply not the case.

Data from Alzheimer’s Australia shows 1 in 13 Australians living with dementia are under the age of 65. Some of these people are in their 30s and 40s.

In NSW alone, there are more than 8,400 people under the age of 65 living with what is referred to as ‘younger onset dementia.’ As our population ages and the prevalence of dementia increases, that figure is projected to jump to more than 9,020 by 2020.

Younger people diagnosed with dementia face a completely different set of professional and family related issues. They may have dependent children or elderly parents. They may still be paying off a mortgage. And, if their working life is unexpectedly cut short, there will be a host of financial implications.

The Younger Onset Dementia Key Worker Program, which launched in 2013, is a unique initiative giving individualised support and information to people under the age of 65 who are living with dementia, their families and carers.

One-on-one support is a key part of the initiative and is something that no other program in Australia offers to people living with younger onset dementia.

I would like to highlight to your readers the great success of this Federal Government funded program which has supported more than 700 people in NSW since its inception.

However, there is concern about the future of this highly successful and unique program beyond July next year, when it may be rolled into the National Disability Insurance Scheme.

Our hope is that this vital program not only continues to provide much-needed support for younger people living with this life limiting illness, but also expands significantly to keep pace with the growing levels of demand.

We are grateful for your help in raising critical awareness of a program that we as an organisation are incredibly proud of.

John Watkins, CEO, Alzheimer’s Australia NSW


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