Younger Onset Dementia Toolkit for Carers and Families

The Lovell Foundation has teamed up with Edith Cowan University (ECU) and not-for-profit aged care and retirement living providers Bethanie and Mercy Health, to develop an exciting and innovative educational toolkit to support 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, who has the rare inherited form of dementia, tested positive when he was just 37 years old, after he had watched the disease claim the life of his mother.

Younger Onset Dementia is defined as a dementia diagnosis before the age of 65. Today it is estimated up to 25,1001 Australians are affected.

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 residential aged care facilities.

ECU School of Nursing and Midwifery Senior Lecturer Dr Caroline Vafeas and her colleagues developed the YOD toolkit as an electronic talking book. “It is a valuable resource to help health care workers tailor the care they provide to young people living with dementia,” Dr Vafeas said. “By providing links to resources and practical tips for caring, we hope this resource can help employed carers develop strategies to assist with meaningful care.”

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

Bethanie Dementia Consultant Michelle Harris has witnessed first-hand how Younger Onset Dementia not only impacts the person with the disease, but also their family, friends and service providers. “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,” Ms Harris said.

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 to the lives of young people living with dementia 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,” Adjunct Professor Cornelissen said.

The YOD toolkit is now available for aged care providers to download for free by visiting www.lovellfoundation.com.au.