The Dementia Collective #40 is Live!

This episode can be found HERE

What happens when the people holding the care system together start to break?

In this episode, Andrew Karesa sits down with Stephanie Muskat, an award-winning registered clinical social worker, psychotherapist, caregiver advocate, and founder of Compassion in Caregiving, to explore the emotional, practical, and systemic realities of caregiving.

Stephanie shares her story of becoming a caregiver at 19, when her mother began showing signs of what was later diagnosed as frontotemporal dementia. As an only child, she was suddenly navigating doctors, specialists, hospitals, discharge planning, and family dynamics while trying to build her own life.

Together, Andrew and Stephanie discuss what caregivers carry that often goes unseen: guilt, anger, burnout, resentment, grief, and the pain of family members who do not show up. They also explore why caregivers are often treated as a “given” in the healthcare system, despite holding so much of it together.

Stephanie challenges the label of the “difficult caregiver” and explains why advocacy is often misunderstood when families are trying to protect someone they know best. She also reflects on young caregiving, children and dementia, cultural expectations, caregiver mental health, and why dementia should not be hidden from family life.

This is a conversation about caregiving, family, burnout, advocacy, guilt, grief, and the urgent need to stop treating caregivers as invisible background support.

In this episode:

• Becoming a caregiver at 19

• Why frontotemporal dementia can be hard to recognize

• When family members do not show up

• The harm of calling someone a “difficult caregiver”

• How unpaid caregivers hold the system together

• Why anger can be a sign of burnout

• The guilt of choosing between caregiving and your own life

• Why children should not automatically be hidden from dementia

• How culture and family expectations shape caregiving

• Why caregivers need more than awareness and good intentions

Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or loved one living with dementia, this conversation is a reminder that caregivers are people too. They are not a given. And they should not have to break before anyone notices they need help.

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Your support truly makes a difference.

Village Members receive:

• Early access to new episodes

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• Optional name listing on our website’s “Thank You Wall”

This work cannot be done alone. Every conversation, every story, and every episode helps shift how the world understands dementia. Your five dollars directly strengthens that impact.

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Don’t Forget to Sign Up for blueBell Connect

We are excited to announce that our patent-pending tool, blueBell Connect is now 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]

Click HERE to sign up