Early Onset Dementia: a special podcast series
Episode #1: One Family's story on how a diagnosis impacted their lives
Our Young Onset series begins with a conversation between Matt Dineen, a father of three and husband from Ottawa, Ontario and Jillian McConnell, guest host and Knowledge Mobilization lead with brainXchange. Nine years ago, Matt's wife Lisa was diagnosed with Behavioural variant Fronto-temporal dementia (bvFTD) at the age of 43
Episode #3: Changing the Narrative
In this episode of our Young Onset Dementia series, guest host, Kathy Hickman of the brainXchange and Alzheimer Society of Ontario speaks with Jill Czuczman who is care partner to her husband David, living with Frontotemporal Dementia. Jill 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 at mid-life. Facing these challenges head-on, Jill shares how she and David have chosen 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.
Episode #2: Young Onset Dementia: One family's story Pt. 2: the children's perspectives
Jillian McConnell, our guest host, speaks with the Dineen children: Justin, Rebecca, and Peter who were just 12, 10, and 8 at the time of their mom’s diagnosis (9 years ago), about their experiences as younger children learning about their mother’s bvFTD diagnosis and now as teenagers / young adults. They discuss the unique challenges they faced and offer perspectives and strategies that continue to help them as they navigate their mother’s diagnosis and their relationship with her.
Episode #4: Early Onset-Have a Good Day, Every Day
John and Cindy McCaffrey's motto is “Have a good day, every day”. In this episode of our Young Onset Dementia series, guest host, Kathy Hickman of the brainXchange and Alzheimer Society of Ontario talks with them about their experiences of living with and caring for someone with young-onset dementia, how they have built a sense of community and continue to maintain a positive attitude by living in the moment.
John and Cindy discuss how they took action when they couldn’t find the “right” supports for someone living with young-onset dementia by creating a program called YouQuest. YouQuest focuses on providing intentional days for people living with young onset dementia based on providing real-life experiences, all guided by its participants.