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Free younger onset dementia toolkit to benefit carers and families

Thursday, 08 December 2016


Edith Cowan University (ECU)  has teamed up with the Lovell Foundation and not-for-profit aged care and retirement living providers, Bethanie and Mercy Health, to develop an exciting and innovative educational toolkit to help carers of people living with Younger Onset Dementia (YOD).

The Lovell Foundation was set up by Garry Lovell and his wife Mandy to raise awareness of YOD and encourage better care options for people living with the disease. Garry tested positive for the YOD gene when he was just 37 years old, after he had watched the disease claim his mum’s life.  

YOD is defined as a dementia diagnosis before the age of 65. Today it is estimated up to 24,500 Australians are affected by the disease.

The Lovell Foundation established the Trevor Mast Research Scholarship with the aim of creating a free training tool for carers looking after people living with YOD both at home and in aged care. ECU School of Nursing and Midwifery Senior Lecturer Dr Caroline Vafeas helped develop the YOD toolkit in the form of an electronic talking book. Dr Vafeas said it was a valuable resource to help aged care workers tailor the care they provide to young people living with dementia.

“By providing links to resources and practical tips for caring, we hope this book can help carers develop strategies to assist with meaningful care,” Dr Vafeas said.

“The e-flipbook also incorporates pre- and post-knowledge tests, which will allow anyone who completes the book to be credited with it as professional development.”

Bethanie Dementia Consultant Michelle Harris said the person living with YOD isn’t the only one affected by the disease, because it also heavily impacts on family, friends and service providers.

“It’s estimated that the number of people living with YOD in Western Australia will increase from 1,686 people in 2011 to 2,020 by 2020,” Ms Harris said.

“This toolkit aims to improve education and awareness around the disease which will ultimately benefit everyone involved in the care of someone living with YOD.”

The YOD toolkit is free for all aged care providers to access, with the hope it will be embraced across Australia.

Mercy Health Group Chief Executive Officer Stephen Cornelissen said his organisation was proud to be involved in this project, and he hopes it can make a real difference in the lives of people living with YOD and their carers.

“This is just a small step towards improving the care of people living with YOD, but it is a valuable one and we look forward to future advances in this area,” Adj Prof Cornelissen said.

The YOD toolkit is now available for aged care providers to download for free to educate staff.


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