The Dementia Collective

The Letter in the Headboard: A Novel Born from Dementia (with Michael A. Booth)

The Dementia Collective

Show Notes

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.

Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://www.michaelanthonyboothauthorpage.co.uk/

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Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members.

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