It is well known that people with Down syndrome are vulnerable to developing younger onset dementia (defined as dementia diagnosed before the age of 65 yrs). Down Syndrome NSW has taken a keen interest in recent developments in support for people with younger onset dementia and their carers, so this announcement is another welcome initiative:
The NSW Government will fund a groundbreaking $250,000 research study into younger onset dementia to improve services and support for younger people with the disease.
Premier Kristina Keneally and Minister for Ageing and Disability Services Peter Primrose have announced that Alzheimer’s Australia NSW would undertake the two-year project. They made the announcement at the official opening of the organisation’s new headquarters on the Macquarie Hospital campus.
Alzheimer’s Australia NSW is the peak body for people with dementia, providing advocacy, support services and education to sufferers and their carers.
Alzheimer’s is the most common form of dementia, which causes a progressive decline in a person’s memory, judgement and communication.
In NSW, 84,000 people currently live with dementia and this figure is expected to soar to 341,000 people by 2050.
Younger onset dementia affects people aged 45-64 and there are an estimated 5,000 people with this condition in NSW.
The $250,000 research project follows a prevalence study by the South East Sydney Area Health Service, which found 1 in 750 people aged 45 to 64 had younger onset dementia.
The project will focus on developing plans, services and accommodation options specifically shaped around people under 65 who do not fit into typical dementia support services designed for older people.
The NSW Government is also providing:
$1.2 million in the 2010/11 Budget for additional dementia clinical nurse consultants;
- $1 million in recurrent funding to Alzheimer’s Australia NSW to maintain a dementia resource service, advisory services and a carer education officer; and
- Rental assistance for the new Alzheimer’s Australia headquarters at Macquarie Hospital Campus and a $17,000 grant for capital upgrades to the building.
“People with younger onset dementia have vastly different needs to those diagnosed over the age of 65 and don’t fit into mainstream dementia services,” Ms Keneally said.
“This NSW Government funded research project will address the different types of support people with younger onset dementia need to maintain their quality of life.”
“Alzheimer’s Australia is well placed to provide the information we need to make life better for people with younger onset dementia,” Mr Primrose said.
“Alzheimer’s Australia NSW provides invaluable support services for people with the disease, their families and carers and we look forward to seeing the results of the research.”
CEO of Alzheimer’s Australia John Watkins said: “We warmly welcome this grant as it gives us an opportunity to focus on the special needs of those with younger onset dementia."
If you are still looking for a film for these cold nights, you may want to have a look at Strong Love (Bonnie Burt Productions, 2007) It is a documentary following two young adults, Jon and Holly, who have Down syndrome as they plan their marriage and then start their married life together. Much of Jon's life centers around weight-lifting competitions as he is a world record holder and Special Olympian. It is an interesting view into how he fits into this world. The parents and Jon's coach tell their stories of their relationships with Jon and Holly. The evolution of these relationships over the three years is quite insightful. Holly and Jon are a wonderful couple and their story would be of interest to parents, professionals, students and people with Down syndrome.
