Why Dementia Is Missed Early: My Conversation on Rebellious Wellness Lifestyle
- 3 days ago
- 4 min read
My Conversation on the Rebellious Wellness Lifestyle Podcast
I was so honored to join the Rebellious Wellness Lifestyle podcast for a wide-ranging conversation about something most of us quietly fear and few of us really understand: dementia, and what it asks of the people who love someone walking that journey.
If you, or someone you love, is caring for a person with dementia, I hope you'll take a listen. We covered a lot of ground — from why our medical system so often misses what's really happening, to the practical, compassionate framework I teach caregivers to help them feel less lost.
Listen to the episode on Spotify here: The Dementia Journey No One Prepared Your For with Amy Shaw, PA-C
From Wedding Photographer to Dementia Expert
One of the first questions the host asked me was how I got here. The short version: I studied primate cognition in college, spent about a decade as a wedding photographer, and eventually found my way into palliative medicine. It sounds like a winding road, but it came full circle. Weddings, births, and the end of life are all milestone moments — full family affairs marked by stress, love, logistics, and high expectations. My job behind a camera was to shelter couples from the chaos and help them hold onto what mattered. That's not so different from the work I do now with families facing dementia.
Why Dementia Is Missed Early
In palliative medicine, I saw it again and again: our healthcare system is built around a patient who can reliably remember, report, and advocate for themselves. Dementia, from day one, disrupts exactly that capability. People with dementia can sit in a clinician's office and answer questions in a way that makes everything look fine — while at home, their family is quietly drowning in confusion.
This is exactly why dementia is missed early—because the medical system depends on patients to report symptoms that the disease itself is already disrupting.
Families are left to make sense of memory lapses and daily task breakdowns on their own. And because our brains are wired to make sense of things, caregivers do — often in ways that make their loved one the bad guy. I can't tell you how many people have told me, "I think they're lying to me," or "They're being manipulative." That's not cruelty. That's a caregiver's brain trying to fill in a gap no one has explained to them.
The Caregiver Backpack
I talk about the "caregiver backpack" — an invisible, heavy load full of bricks like grief, anger, resentment, loss, and guilt. Imagine caring for a spouse of sixty years while also believing they're deceiving you. That is an unbearable weight, and so much of it is unnecessary.
When caregivers learn what is actually breaking in the brain, why things fluctuate from day to day, and how to adapt their communication, a lot of those bricks can be set down. The journey is still hard. But it doesn't have to be marked by confusion on top of grief.
Dementia Follows a Pattern
One of the most reassuring things I can tell caregivers is that dementia is not random. It follows a pattern. I've simplified the staging into four recognizable phases so that families can look at what they're seeing at home and say, "Oh — that's where we are." From there, we can align our communication and support with the reality in front of us, instead of beating our heads against the wall of the disease.
A Message to Caregivers
Near the end of the conversation, I was asked what I'd want to leave listeners with. It's this: if you are caring for someone through a dementia journey, you are doing an amazing job. Your loved one is fortunate to have you. This is not an intuitive road. It changes minute to minute, hour to hour, year to year. There is no expectation of perfection — only compassion, including for yourself.
Dementia may rob your loved one of their skills and abilities, but it will never take away their humanity. And with the right framework, you can keep showing up for them — and for yourself — in a way that feels like love, not loss.
Keep Going with Me
If this conversation resonates with you, I'd love to stay in touch. I send out a regular newsletter with practical guidance, encouragement, and resources for caregivers — you can sign up here. And if you haven't already, please give the episode a listen and share it with someone who needs to hear it.
Thank you to the Rebellious Wellness Lifestyle team for such a thoughtful conversation — and thank you, as always, for being here.
If You Want Help Navigating the Dementia Journey
If you are caring for someone with dementia, you have likely realized how quickly this journey becomes overwhelming.
Most caregivers are trying to figure it out as they go—without a clear understanding of what is happening, or what comes next.
This is the work I do.
I help caregivers understand the what, when, and why of dementia so they can navigate the how with clarity and confidence.
If you want personalized guidance and support as you move through this journey, you can learn more about working with me here:
If you want personalized guidance:
If you prefer a self-paced approach:
Amy Shaw, PA-C, is a dementia care clinician, educator, author, and founder of Better Dementia™, a national education platform for caregivers. She is the author of The Arc of Conversation: A How-to Guide for Goals of Care Conversations (Springer, 2025) and provides self-paced dementia education and one-to-one family support. She helps families understand the what, when, and why of dementia so they can master the how of caregiving.