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Intouch : In Touch Winter 2012
8 IN TOUCH WINTER 2012 NEWS FEATURE A Younger Onset Dementia (YOD) forum was held on 18 April at the Mercure Hotel in Sydney and attracted so much interest that it was flled to capacity. A total of 140 people attended the forum, which was targeted at service providers working in the community with an interest in YOD. Of those who attended, 22 people were either living with YOD or caring for someone with the condition, and they were invited to actively participate in the forum and share their experiences. The forum was offcially opened by The Hon. Andrew Constance MP, Minister for Ageing and Disability Services, who has since announced a $1 million three- year pilot, to be delivered by Alzheimer’s Australia, that will provide 40 fexible, person-centred packages for people with YOD. YOD refers to the occurrence of dementia in adults under the age of 65, and currently affects an estimated 16,000 people across Australia.AlzNSW Manager of Services Robyn Faine said people with YOD were often left behind because they are a small, but unique, group with a different set of needs. "Existing support services are lacking when it comes to YOD, as these services are designed to accommodate older people and simply do not meet the specifc requirements of those with YOD, ” Robyn said. "People under the age of 65 are often in part-time or full-time employment, and have dependent children. This means a diagnosis of YOD can have serious implications for the fnancial stability of a family, which is further exacerbated if the spouse of a person with YOD also gives up their employment to become a full-time carer. Furthermore, people who are diagnosed with YOD are more physically active than those over the age of 65, and research has shown that some forms of YOD, such as fronto-temporal dementia usually involve behaviours of concern which are heightened when the person is physically active. " Having recognised that people living with YOD have this unique set of circumstances, which service providers must meet, AlzNSW has been working closely with the NSW Department of Ageing, Disability and Home Care on a research project to inform government policy regarding YOD services. The results of the research, being done in collaboration with UnitingCare Ageing and the Social Policy Research Centre at the University of NSW, will be delivered to the NSW State Government shortly. The report, Service and Support for People with Younger Onset Dementia and their Families, is a result of extensive face-to-face interviews and online surveys conducted in both metropolitan and regional NSW. The data collected includes the perspectives of Culturally and Linguistic Diverse (CaLD) groups, Indigenous Australians and people with other diagnoses as well as dementia. AlzNSW hopes the results of the research will inform decisions regarding effective service delivery. AlzNSW is encouraging policies directed at age-specifc services, age- appropriate care options, age-appropriate community support, respite and long- term accommodation options, carer support and education programs, as well as EXISTING SUPPORT SERVICES ARE LACKING WHEN IT COMES TO YOD. THESE SERVICES ARE DESIGNED TO ACCOMMODATE OLDER PEOPLE AND SIMPLY DO NOT MEET THE SPECIFIC REQUIREMENTS OF THOSE WITH YOD. YOUNGER ONSET DEMENTIA FORUM ALZNSW AND THE STATE GOVERNMENT RECENTLY HELD A FORUM TO LOOK AT HOW SERVICES CAN BE IMPROVED FOR PEOPLE WITH YOD. BY CHARLOTTE MITCHELL Consumer Graeme Atkins and his partner Susan Murphy at the forum.
In Touch Autumn 2012
In Touch Autumn 2013