Kate Swaffer was diagnosed with dementia at the age of 49 and since then she has written books and spoken around the world as a leading authority on the condition.
She spoke to an audience of about 120 people at the inaugural Younger Onset Dementia Public Meeting organised by Villa Maria Catholic Homes (VMCH), in Nunawading, recently.
Younger Onset Dementia (YOD) describes people under the age of 65 who have the condition. There are about 25,938 Australians living with YOD.
While it has not been an easy road for Kate, she has not let this stop her from reaching out to help others navigate the challenges of YOD.
She encourages individuals to push for early support to help them maintain their independence. She also spoke about her efforts in lobbying for change across the sector to understand the unique needs of people with YOD. She also highlighted the importance of more community education and awareness in supporting both the person with the diagnosis and their family.
VMCH Dementia and Cognition Guided Pathway Service Team Leader, Elizabeth Baxter, described the meeting as a success.
“The feedback provided was overwhelmingly positive; much of the feedback was recognition of this event as being truly consumer focussed and challenging historical ideas,” she said.
She said the meeting showed a need for additional community awareness and supports targeted at people living with YOD in the eastern metropolitan region. There was support shown for an annual event focussed on people living with YOD in the community, including regional areas.
“A planning day will be arranged with interested consumers to establish a structure that will provide ‘coupled support’ to individuals with a diagnosis and their family; carers; VMCH and Uniting Care Life Assist will then work collaboratively to fund and support the setup of this project,” she said.
Learn more about YOD support:
VMCH and Uniting Care Life Assist have collaborated to offer a pilot program that focuses on the needs, goals and supports specific to people with a YOD diagnosis that are living at home.
“We are seeking interest from people living at home and looking to access education, resources, support and meaningful activity, as well as linking in with other people in similar situations,” Elizabeth said.
It targets people near the beginning of their YOD journey and offers them an opportunity to share personal experiences.
People with YOD or their carers living in the eastern metropolitan Melbourne can phone the Carer Support Program on 1300 971 720 to learn about short-term case management and community programs.