Season 2 Episode 54: The Dementia Deck: Why You Need to Talk About Dementia Care Now (While You Still Can)

advance directives alzheimer's caregiving compassion & choices dementia dementia directive dementia planning end-of-life conversations memory care decisions the death deck the dementia deck the eol deck Nov 03, 2025

Santiago holding The Dementia Deck with episode title

Here's a number that should make you pause: according to Compassion and Choices, one in three older adults will die with some form of dementia. By 2050, that's 14 million Americans age 65 and older.

And here's the kicker. Over the last 20 years, deaths from heart disease have dropped by 9%. But deaths from Alzheimer's? They've skyrocketed by 145%.

We're getting better at keeping people alive. Which means more of us will face dementia. Which means we need to have conversations about dementia care now, while we're still clear-minded enough to make our own decisions.

The Conversation You Probably Haven't Had

You've probably done the basics. Maybe you've filled out your advance directive. Maybe you've told your spouse you don't want to be on life support. Maybe you've even designated a power of attorney.

But have you specifically talked about dementia care?

Because dementia planning isn't just about dying. It's about years of living with declining cognitive ability. It's about dozens of decisions that don't show up on standard advance directive forms.

Questions like:

If I can't safely swallow anymore, do I want a feeding tube?
When I reach late-stage dementia, do I want comfort care only or all available treatments?
What worries me most about being a caregiver or needing care?
What activities bring me joy that I'd want to continue as long as possible?

These aren't hypothetical questions. These are real decisions families face every single day.

Why Standard Advance Directives Aren't Enough

Standard advance directives cover the big stuff: DNR orders, life support, organ donation. But dementia care involves hundreds of smaller decisions about quality of life, dignity, routines, and comfort.

It's the difference between "no life support" and "I want to keep listening to jazz music even if I can't remember why I love it."

It's the difference between "comfort care only" and "please keep offering me my favorite foods even if I refuse them."

Back in Episode 33, we covered psychiatric and dementia directives and the legal side of dementia planning. But this episode is different. Today we're introducing The Dementia Deck, a conversation tool that helps you think through the specific care preferences you'd want if you were living with dementia.

The Younger Onset Reality

"But I'm too young to worry about this."

Here's something most people don't know: younger onset dementia can begin as early as your 30s or 40s. While it's less common than late-onset dementia, it happens. And it makes early planning even more critical.

You don't wait until your house is on fire to buy insurance. You don't wait until you're hospitalized to fill out advance directives. And you shouldn't wait until you're showing symptoms to talk about dementia care preferences.

What is The Dementia Deck?

The Dementia Deck is a set of 41 cards designed specifically to help you express your dementia care preferences while you're still clear of mind. It has multiple-choice questions and open-ended questions that guide conversations about what matters most to you.

The creators recommend starting with comfort questions. What music brings you joy? What hobbies would you want to continue? What routines give you peace? These easier questions help you ease into the conversation before moving into heavier care decisions.

This deck isn't meant to be used after cognitive decline has already begun. It's designed for when you're healthy and can think clearly about your future.

Our Conversation (And It Got Real)

Santiago and I sat down with The Dementia Deck and worked through several cards together. Here's what came up:

Card 1: What worries you most about being a caregiver? We both immediately said "all of the above" because the options were keeping them safe, managing physical demands, and the emotional toll of watching decline. But if we had to rank them? Keeping each other safe came first.

I added something important here: if you're a caregiver, accept help. I know from experience. You might think it has to be done exactly your way, but getting support so you can take care of yourself is critical. Reach out to an end-of-life doula, a friend, a family member. Don't try to do this alone.

Card 2: If I'm unable to safely swallow, what do I want? The options were: give me a feeding tube (I want to live as long as possible), that's my body's way of letting go (listen to it), or it depends on how I'm doing otherwise.

Santiago chose "it depends" because he's had a feeding tube before during cancer treatment and knows it wasn't terrible. But with dementia, you might not understand what's there and could pull it out, causing infections and more problems.

I chose "that's my body's way of letting go." In our doula class, we learned about the complications feeding tubes can cause for dementia patients. I think I'd want to let my body go naturally at that point.

Card 3: When I approach late-stage dementia, what do I want? Santiago was clear: no surgeries, no tubes, no cancer treatment. But also focus on comfort and things that bring joy. No life-saving measures. Just let him live the life he has left doing things that make him happy.

I agreed completely. At that stage, I don't want hospitals or interventions. Just comfort and whatever brings me peace.

The open-ended question: What do you worry about most? Santiago's answer: being a burden. Mental, physical, or financial. He doesn't want to be a burden on our family. If he forgets who we are, he'd rather go quickly than put us through years of difficult care.

My answer: forgetting everyone I love. Not knowing the people around me anymore. That terrifies me.

But then Santiago said something that shifted my perspective: "Even if you couldn't remember who I was, I'd still be there for you."

And I realized something. Caring for someone you love isn't a burden. It's an act of love. Where I think I'm being a burden, the person caring for me wouldn't feel burdened because they love me.

We've actually been on both sides of this during Santiago's cancer treatment. It wasn't easy for either of us. But we showed up for each other.

Why These Conversations Matter (Even Though They're Hard)

Nobody wants to imagine themselves or their loved ones going through cognitive decline. These conversations are uncomfortable. They're emotional. They force you to confront a future you'd rather not think about.

But if it happens, wouldn't you rather have expressed your preferences when you could?

Wouldn't you rather your family knew what matters to you instead of guessing or arguing about what you'd want?

The questions in The Dementia Deck help you think through scenarios you might not have considered on your own. They create structure for difficult conversations. They give you language for wishes you might not know how to express.

But Remember: Conversation ≠ Legal Documentation

Here's something critical: The Dementia Deck is a conversation starter. It is NOT a replacement for legal documentation.

After you have these conversations, you need to follow through with actual legal documents.

Currently, Nevada is the only state that specifically addresses dementia in their advance directive forms. For everyone else, you can use the form at dementia-directive.org and ask your estate planning attorney about adding it as an addendum to your existing advance care documents.

The conversation tool opens the door. But you have to walk through it and document your wishes legally so they're actually enforceable.

Who Should Have This Conversation?

Anyone who's clear of mind and open to the conversation. Period.

If your family has a history of dementia or Alzheimer's, this conversation becomes even more important. If your parent or grandparent had it, you might be at higher risk.

For adult children thinking about aging parents, this deck provides a way to have the conversation without making it feel like an interrogation. "Hey, I got this interesting conversation deck, want to try it?" feels a lot less threatening than "We need to talk about what happens if you get dementia."

How to Actually Use This Deck

A few practical tips:

Start with comfort questions first. The deck recommends beginning with questions about music, hobbies, and sources of comfort. Let people talk about what brings them joy before diving into heavy care decisions.
Include the right people. Maybe it's just you and your spouse. Maybe you want your adult children there too. Or if you're using it with an aging parent, include siblings so everyone hears the same answers.
Have the conversation more than once. Preferences can change. Some answers might spark additional questions you want to revisit.
Document the answers. Record the conversation if you can, or at least take detailed notes. Then share your wishes with the people who would be making care decisions: your power of attorney, your adult children, your doctor.

Where to Get The Dementia Deck

You can find The Dementia Deck at thedeathdeck.com. They also have The Death Deck (for general end-of-life conversations when everyone's healthy) and The EOL Deck (for when someone is actually facing end-of-life).

Have the conversation while everyone is healthy and clear of mind. Don't wait until there's a diagnosis. Don't wait until symptoms appear. By then, it might be too late to capture someone's true preferences.

The Gift of Clarity

If you're reading this right now, you have something precious: clarity of mind to make these decisions for yourself.

You can think clearly about what matters to you. You can express your preferences. You can guide your family so they don't have to guess.

Don't wait until that choice is taken away from you.

The greatest gift you can give your family isn't just your preferences. It's your presence of mind while making them.

Ready to start the conversation? Get The Dementia Deck at thedeathdeck.com and download the dementia directive form at dementia-directive.org. Then schedule a meeting with your estate planning attorney to make it official.

Listen to the full episode where Santiago and I work through The Dementia Deck together and share our actual answers to these difficult questions.

Resources mentioned in this episode:

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