The Dementia Collective #46 is Live!

This episode can be found HERE

What happens when the caregiver becomes the person living with dementia?

In this episode, Andrew Karesa sits down with Michael Booth, dementia advisor, educator, advocate, and author, to explore what it means to navigate life after a young onset Alzheimer’s disease diagnosis while continuing to create, teach, and challenge the stigma surrounding dementia.

Michael shares the deeply personal journey of caring for his mother after her diagnosis, only to later receive a diagnosis of his own. He reflects on the early symptoms he dismissed as stress, the devastating week that followed his diagnosis when he lost his driver’s licence, his career, and his independence, and how those experiences reshaped the purpose of his life.

Together, Andrew and Michael discuss caregiving, young onset dementia, the realities of diagnosis, and why so many misconceptions about dementia continue to persist. They also explore why Michael chose to write Forget Me Not: The Letter in the Headboard, the first known murder mystery written by an author living with dementia, using fiction to help readers experience life through the eyes of someone living with the disease.

This is a conversation about dementia, caregiving, stigma, purpose, advocacy, creativity, resilience, and choosing to live fully in the present.

In this episode:

• Michael’s journey from caregiver to living with young onset Alzheimer’s disease
• What happened in the week following his diagnosis
• Why he believes empathy matters more than sympathy
• The challenges families face caring for someone with dementia
• How writing became both therapy and advocacy
• The story behind Forget Me Not: The Letter in the Headboard
• Why he believes dementia education needs to change
• The importance of accepting support after a diagnosis
• Living in the present when the future feels uncertain

Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or someone living with dementia, this conversation is a powerful reminder that a diagnosis does not erase a person’s purpose. Michael’s story challenges assumptions about what people living with dementia are capable of and reminds us that while dementia may change a life, it does not define the person living it.

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Don’t Forget to Sign Up for blueBell Connect

blueBell Connect, our patent-pending dementia caregiving tool, is available for caregivers to sign up. 

blueBell Connect provides caregivers clinically valid, personally specific and culturally appropriate support recommendations in your daily care for individuals living with dementia. 

Click HERE for a blueBell Connect brochure

For more information, check out bluebellconnect.ca or email [email protected]

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