Jill Czuczman a care partner to her husband David, living with Frontotemporal Dementia talks about some of the unique challenges associated with young-onset dementia from the long road to getting a diagnosis, to leaving the workforce early, the lack of understanding and stigma, to the struggles to find supports that meet the unique needs of those living with or caring for someone with dementia in mid-life. Facing these challenges head-on, Jill shares how she and David have made the choice to find the positive every day and the steps they have taken to live well with dementia, including getting involved in research and becoming advocates.
Resources
Frontotemporal Dementia (FTD) Durham Support Group - https://m.facebook.com/groups/221301621683010
The Association for Frontotemporal Dementia - https://www.theaftd.org
brainXchange, Frontotemporal Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Dementias-Rare-forms-of-/Frontotemporal-Dementia
Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia
brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia
Dementia, Stigma and Taking Action –
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Culture and Communication - The System Journey
Town Hall Discussion on Human Rights and Dementia
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Reflection, Reframing and Reimagining
Marshalling resources within oneself and within community
Work, Life : Adapting to Change
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Promoting the Voice of Lived Experience: A Panel Discussion
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