Quality of Life: People with Intellectual Disability and Terminal Illness
Researchers at the University of New England are interested in finding out the experiences of people with intellectual disabilities who have died whether suddenly, after a short illness, or after a long illness.
We want to find out about the care and services received by the person, you and other staff and residents, his/her family and friends in the last months of the person's life.
Further information and a link to the survey are here.
We want to find out about the care and services received by the person, you and other staff and residents, his/her family and friends in the last months of the person's life.
Further information and a link to the survey are here.
Lines of Inquiry, Edition 6
Centre for Applied Disability Research, October 2014
Research newsletter.
Beth Turner, Project Officer,Department of Developmental Disability Neuropsychiatry
School of Psychiatry, The University of New South Wales
Presentation to 25th PANDAA (Professional Association of Nurses in Developmental Disability) conference, 15th - 16th October 2014. Other presentations are available from the PANDDA website here.
Sniffing out clues on Down syndromeAudrey Tan, The Straits Times, 30th September 2014
Croatian-born Dean Nizetic, 55, is professor of molecular medicine at Nanyang Technological University's Lee Kong Chian School of Medicine. His research interest in Down syndrome dates back more than 20 years, starting soon after he graduated from the medicine faculty at Croatia's University of Zagreb in 1982. Professor Nizetic then did research for his PhD thesis in molecular biology at the Max Planck Institute for Biology in Germany.
School of Psychiatry, The University of New South Wales
Presentation to 25th PANDAA (Professional Association of Nurses in Developmental Disability) conference, 15th - 16th October 2014. Other presentations are available from the PANDDA website here.
Sniffing out clues on Down syndromeAudrey Tan, The Straits Times, 30th September 2014
Croatian-born Dean Nizetic, 55, is professor of molecular medicine at Nanyang Technological University's Lee Kong Chian School of Medicine. His research interest in Down syndrome dates back more than 20 years, starting soon after he graduated from the medicine faculty at Croatia's University of Zagreb in 1982. Professor Nizetic then did research for his PhD thesis in molecular biology at the Max Planck Institute for Biology in Germany.
LuMind Foundation, 10th September 2014
The LuMind Foundation announces the award of $1.1 million in funding for six new LuMind Research Grants, propelling Down syndrome cognition research ... The LuMind Research Grants for 2014-2015 significantly build upon the LuMind-supported research that has led to dramatic breakthroughs in defining specific mechanisms responsible for cognitive impairment in Down syndrome, as well as the identification and pursuit of nine new potential drug targets for improving cognitive function, learning, memory and speech, involving the developmental intellectual disability, and overcoming the additional cognitive decline and neurodegeneration associated with the earlier onset Alzheimer’s disease and aging in individuals with Down syndrome ...
The Social Policy Research Centre at the University of NSW has published Self-directed disability supports: Building people's capacity through peer support and action research:
"Community Action Research Disability groups were a new way of combining research with peer support. They aimed to produce research data about self-directed disability support and build research capacity, while at the same time benefit the people who participated, for example through peer support and advocacy. This project shows that CARDs can work well. They produced useful information from around the country about how people experience their disability support and what they want for the future. They were also useful for the group members, providing opportunities for peer support and networking, increasing self-advocacy skills and building research capacity.
Peer support and networking seemed most important to the CARD members. The groups provided a safe, trusted place where people could exchange information and learn from the experiences of other people with disability. People’s preference for such groups in finding and sharing information is important to consider for governments, service providers and advocacy organisations in the transition to the NDIS and other self-directed support options.
The peer support process and findings have been discussed at national and international workshops with people with disability, service providers, policy makers and researchers. Other people are using this way of sharing information or expanding the way they run peer support based on the lessons from this research."Purcal, C., Bevan, N., Cooper, S., Fisher, K. R., Meltzer, A., Wong, M., & Meyer, P. (2014). Self-directed disability support: building people’s capacity through peer support and action research [Final report] (SPRC Report 7/2014). Sydney: Social Policy Research Centre, UNSW Australia
Down Syndrome NSW e-Update, August 2014 #2
The Compose Study is recruiting participants
Compose (Cognition and Memory in People with Down Syndrome) is a clinical study that will assess the safety and potential efficacy of a compound that could enhance memory, language and learning in people with Down Syndrome.
Compose (Cognition and Memory in People with Down Syndrome) is a clinical study that will assess the safety and potential efficacy of a compound that could enhance memory, language and learning in people with Down Syndrome.
- Website: www.compose21.com
- Contact: www.facebook.com/compose.study or call 1300 659 729
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