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This year for International Women's Day we asked women from our organisation a few questions about their work in the dementia space and why the day is important to them. Dementia Australia Dementia Advocate Karen Glennen lives with her husband Kerin in Colac, a small rural town in south west Victoria. In 2016, Kerin was diagnosed with younger onset dementia. In addition to her advocacy work, Karen continues to work across homelessness and family violence programs, and has the dual role of primary carer for both Kerin and her elderly mother. This is what Karen had to say.
How did you become involved in dementia advocacy?
I became involved in dementia advocacy after Kerin's diagnosis of younger onset dementia at the age of 57. Our experience at receiving his diagnosis and following to find supports was the impetus to get involved. The diagnosis suddenly pigeonholed both Kerin and myself in a medical model of patient and carer and discounted his abilities and long-term dreams and plans. After a day at work, we drove to the appointment to leave with Kerin being told not to drive or work and to tick off his bucket list. We want people to understand that those with younger onset dementia still have lives to live, families that love them and things that they want to do and achieve. Living well with dementia is a possibility with the appropriate supports and considerations. We were also having to navigate unknown and inaccessible systems that we knew nothing about.
What has been a personal highlight in your dementia advocacy work?
There have been a number of highlights –
Decoding Dementia workshops and judging panel in Melbourne and providing a speech to the final judging ceremony.
Addressing Parliamentary Committee's at both State and Federal level highlighting the barriers for people with dementia
BRIGHT YOD Telehealth project Steering Committee with Royal Melbourne Hospital.
The opportunity to make a difference to community understanding and the lives of people living with dementia and help in the development of resources and technology that enhances independence.
Other highlights have of course been meeting inspiring and committed people who have willingly shared their knowledge and expertise with us
What is your advice to other women looking to make a difference in advocacy?
My advice would be to use your voice and believe in the validity of your knowledge and journey. You are the experts in your family’s journey and sharing your story can help others at any point in their own journey. Your knowledge can also help others within your community engage with people living with dementia, their families and become more inclusive and welcoming of both. You have the opportunity of helping people maintain their autonomy and challenging the stigma and ignorance surrounding dementia.
Why is International Women’s Day important to you?
Internationals Women’s Day honours the achievements and contributions of women in all aspects of life. It also calls us to consider the struggles of women where inequality and inequity exist. IWD allows me to respect generations of women who have contributed to the freedoms I experience and the wisdom and energy of young women who are reframing womanhood for future generations.
To read our other International Women's Day profiles click below: