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Intouch : In Touch Issue 78
News www.alzheimers.org.au In touch Spring 2011 11 YOUNGER ONSET DEMENTIA The new collaborative research study will canvass participants from metropolitan, regional and rural areas. It will include face-to- face interviews and surveys with people with YOD and their family/ carers about their good and bad experiences regarding accessing services, their pathway to diagnoses, their social support requirements and respite services. The findings will inform policy and service change to increase quality of life and community living standards, ensure a smooth pathway of service and support, and prevent premature entry into residential care. Making a difference Jo-Ann Brown, AlzNSW Senior Researcher and Kylie Sait, AlzNSW's new research officer, are working on the project with other members of the research team from AlzNSW, UNSW and Uniting Care Ageing. Kylie brings a special understanding to the study as the daughter of a man with younger onset dementia. "I'm very excited to be working on this research project," Kylie says. "It is my hope that the recommendations that come out of it make their way into policy and improve service provision for people with younger onset dementia and their families. "The research team recognises the special needs of this cohort," Jo-Ann adds. "They have distinct lifestyle features that are not always evident in older cohorts. They are often still rearing a family, still in paid employment with financial commitments and they are generally physically fit and strong." Get involved If you are a person with YOD, a carer or family member who would like to participate in the study please contact Jo-Ann Brown. T: (02) 8875 4636 E: email@example.com Inspiring change Professor Brian Draper and Dr Adrienne Withall from the Dementia Collaborative Research Centre at UNSW recently won funding from the National Health and Medical Research Council for a study to determine accurate information about the numbers of people affected by YOD, their different conditions, their experiences and those of their family members. The results of the study will inform service planners about the health and support service needs of younger persons with dementia and their carers, and improve training. The study is a collaboration between researchers at UNSW, the University of Sydney and the Prince of Wales, St Vincent's, Sutherland and Port Kembla hospitals. More information: W: www.inspiredstudy.org E: firstname.lastname@example.org T: (02) 9385 2617 New YOD blog Does your mum or dad have YOD? Are you looking for information on YOD? Would you like to talk with other young people in similar situations? The AlzNSW blog Younger Onset Dementia and Me is a place for young people to connect with others, be listened to and find information. Contributors must be over the age of 18, have a parent with YOD and agree to the terms and conditions. Check out the blog and contact Helen Carswell for more information. W: youngeronsetdementia andme.blogspot.com E: email@example.com If you would like to talk to someone about YOD, phone the NSW National Dementia Helpline: 1800 100 500 NEED TO KNOW Younger onset dementia, also known as early onset dementia, is dementia with onset before age 65. The numbers of people with early onset dementia seem to be increasing, however there is little known about this group. NEW RESEARCH PROJECT AlzNSW has teamed up with the University of NSW and Uniting Care Ageing for a new study of services and support for people with younger onset dementia, their families and carers. Kylie Sait and Jo-Ann Brown are working with researchers from UNSW and Uniting Care Ageing to improve services and support for YOD.
In Touch Issue 77
In Touch Summer 2011-12