“When your loved one is diagnosed with dementia, you’re also handed a diagnosis—as a caregiver—and the most important thing you can do is care for yourself just as fiercely as you care for them.”
– Nancy Y Treaster
Caring for a loved one with dementia is a journey filled with heartache, resilience, and profound love. For many family caregivers, it’s a path they never expected to walk—one that demands strength, patience, and a wealth of knowledge. Nancy Y Treaster, co-founder of The Caregiver’s Journey, understands this path intimately. Having been a dementia caregiver three times herself, Nancy has transformed her personal experience into a mission to empower others. Through her nonprofit platform, she provides compassionate, practical support for caregivers navigating the overwhelming and often isolating world of dementia care.
In this heartfelt and informative interview, Nancy sits down with Stacey Chillemi to share powerful insights, expert strategies, and emotional truths that every caregiver should know. From communication tips and managing delusions to navigating the emotional toll of caregiving and finding support resources, Nancy offers guidance that is both deeply personal and universally applicable. Her message is clear: caregivers are not alone, and with the right tools and mindset, they can find peace, confidence, and connection even in the most challenging moments.
Thank you so much for joining us, Nancy! Our readers would love to get to know you a bit better. Can you tell us a bit about your backstory?
Thank you so much, Stacey. I truly appreciate you helping us spread the word. I’ve been a dementia caregiver three times, each experience very different. One journey was due to Parkinson’s, another Alzheimer’s, and the third was related to frontotemporal dementia. And although they all looked different at first, the heartbreaking truth is that they all end in similar ways.
The first time I was a caregiver, I felt completely in the dark—guessing my way through the challenges and learning everything the hard way. By the second time, I found myself guiding the family and providing direction based on my prior experience. That growth inspired me to partner with my dear friend Sue Ryan, who also had multiple caregiving journeys, to create The Caregiver’s Journey. It’s our mission to provide practical resources for family caregivers navigating the world of dementia. Our platform includes a podcast, blog, learning tools, and other essential resources to support people each step of the way.
What inspired you to start The Caregiver’s Journey?
Honestly, it came from a place of deep frustration and compassion. So many caregivers are forced to figure things out through trial and error, which can be overwhelming and lonely. I knew there had to be a better way. That’s why our podcast episodes are under 30 minutes—they’re practical, story-driven, and solution-oriented. We talk through real scenarios like bathing, dressing, and handling delusions, offering step-by-step tips. And we do it with humor, empathy, and structure. We want caregivers to feel less alone and more confident, one episode at a time.
What are the most important communication tips when interacting with someone who has dementia?
Great question. Communication is key—and it’s more than just the words you say. You have to become very aware of your body language and facial expressions. People with dementia are incredibly sensitive to nonverbal cues. If you look worried or tense, they’ll mirror that energy. It’s about creating a calm presence.
Also, don’t ask them to remember things. Avoid saying things like, “Do you remember when we…?” because if they can’t recall it, you’re just causing unnecessary stress or embarrassment. Instead, talk in a way that brings them into the moment without testing them. For example, say, “I love singing Jingle Bells during the holidays,” instead of “Do you remember when we went caroling?” Let them participate if they can—but don’t make it a test. And never quiz them on their name or birthday. Preserving their dignity is everything.
What advice do you have for managing unpredictable mood swings in people with dementia?
The biggest thing to understand is that those mood swings are usually rooted in fear. They may not understand what’s happening around them or within their own minds—and that creates a deep sense of panic. As caregivers, we must remember that fear often shows up as anger or frustration.
When someone with dementia becomes agitated or angry, don’t try to correct or argue with them. You can’t win an argument with dementia. It’s not about facts; it’s about emotion. If delusions begin, which often happens in the middle stages, you have to be ready. That’s why we did a full episode—our only one over 30 minutes—on managing delusions. It’s a must-listen for caregivers to be prepared, not blindsided.
Is it better to walk away when they’re upset or stay and calm them down?
Always begin with calm. Your energy sets the tone. Don’t correct them if they’re confused about who you are. Arguing only intensifies their fear and confusion. Instead, step into their reality. If they say, “I need to go home,” respond with, “Yes, you’re going home tomorrow,” even if “home” isn’t a physical place. You’re acknowledging their reality.
Once they start to relax, that’s the moment to gently redirect. Suggest a snack, some music, or a walk. If the first distraction doesn’t work, keep trying. Eventually, you’ll hit the right one. The process is about calming, redirecting, and preserving their emotional safety. That’s how we help them—and ourselves—through these tough moments.
What’s your advice for caregivers who feel powerless?
That feeling of powerlessness is very real and valid. But the most liberating shift comes when you stop fighting the reality of the disease and instead, step fully into the role of a pragmatic caregiver. When you accept what is instead of focusing on what used to be, everything changes.
It’s also important to let go of trying to force outcomes. For example, maybe your loved one suddenly doesn’t want to get into the shower. Instead of forcing it, find alternative ways to help them stay clean—like sponge baths. You don’t need to win every battle. Be present. Deal with the moment you’re in—not the past or what might happen next week. That presence will give you clarity and peace of mind.
How important is it for caregivers to live in the present?
It’s absolutely essential. Too many caregivers either dwell on how things used to be or get overwhelmed thinking about what might come next. But dementia doesn’t follow a linear path. Sometimes your loved one takes two steps back and one forward. That’s just how it goes.
If you can embrace the now—whatever it looks like—you’ll be calmer, more patient, and far more resilient. It doesn’t mean it won’t be difficult, but it means you won’t constantly be bracing for impact or mourning what’s already gone. You’ll be living in the only space where healing and connection can actually occur: the present moment.
What are some physical changes caregivers should expect early in the dementia journey?
There are quite a few changes that surprise people. One big one is with eating and drinking. Someone with dementia might forget how to use a fork or simply forget that they need to eat or drink. You’ll need to guide them—even hand-feed in some cases. It’s not that they’re refusing food; they’ve just lost the steps needed to complete the action.
Other changes include depth perception issues, which can make steps and showers terrifying. Incontinence is also inevitable. That’s why we created five episodes solely on managing incontinence—because it can become a deal-breaker for some caregivers. If you can’t handle certain levels of care, that’s okay. But it’s better to know that ahead of time and plan accordingly.
How can caregivers handle the overwhelming lifestyle they often face?
You have to recognize your own limits. Caregiving isn’t just a role—it’s a shift in your entire lifestyle. I cared for my husband at home while working full-time, then moved to part-time, and eventually had to retire. It was a gradual process of adjustment. I also hired part-time help. You can’t do it all alone, nor should you.
Sometimes even basic errands become impossible unless you have someone else step in. That’s why adult daycare, respite care, or part-time in-home help are so important. Know your boundaries and don’t be afraid to ask for help. Caregiving is a marathon, not a sprint.
At what point does someone with dementia need full-time care?
There are key indicators: If they can’t manage their medications, use the phone, or prepare meals, they cannot live alone. That’s when you need to consider full-time care—whether it’s in-home with support or a care facility. It’s tough, but recognizing those milestones early helps you avoid crisis situations.
What do you say to people who simply can’t afford memory care facilities?
It’s a heartbreaking reality, and you’re absolutely right—it can wipe out a lifetime of savings. My number one recommendation is to speak with an elder care attorney or a financial planner who specializes in long-term care. Every state has different benefits, and professionals in this field can guide you through programs like Medicaid or VA assistance.
We created The Caregiver’s Journey podcast because many people can’t afford institutional care. We wanted to make sure those caring for loved ones at home had practical tools and a strong support system. There’s help out there—but navigating it can be complex, which is why guidance is so important.
Is hospice only for end-of-life stages?
Not at all. That’s a common misconception. Hospice can step in well before the final days. They can help with bathing, medical support, and giving caregivers a break. A friend of mine had hospice come in every morning to get his wife ready for adult daycare. That assistance made it possible for him to continue working and maintain some balance.
What are the most important messages you want caregivers to hear?
That caregiving is a team sport. When your loved one is diagnosed with dementia, you’re also handed a diagnosis—of becoming a caregiver. And you’re not just caring for them. You have to care for yourself too.
Your well-being impacts the quality of care your loved one receives. Also, be mindful of your communication. Positive language, calm energy, and empathy will serve you both. And remember—you can’t win against dementia, so don’t fight it. Instead, meet it with knowledge, compassion, and preparation.
How do you recommend caregivers handle their own emotional struggles?
Therapy or support groups can be incredibly helpful. Sometimes just realizing you’re not alone is enough to ease the emotional burden. There are great online communities—even Facebook groups—where caregivers can vent, ask questions, and feel validated.
And if you know a caregiver, the best gift you can give them is time. Sit with their loved one for a couple of hours so they can rest, take a walk, or just have lunch with a friend. Those small breaks can make a big difference.
How can a caregiver maintain their own mental health throughout this long journey?
It begins with permission. Give yourself permission to take care of you. That might mean seeing a therapist, taking a walk, or simply asking for help. It feels counterintuitive, but the better you care for yourself, the better you’ll be at caring for your loved one.
How important is positivity in caregiving?
It’s everything. Your loved one may not remember your name, but they’ll always recognize kindness. Smile at them, and more often than not, they’ll smile back. That exchange—even in silence—is powerful. They are still in there, doing the best they can. Your energy, your attitude—it matters more than you think.
Can you share the services your organization offers?
We’re a nonprofit, and our main resources include our podcast and blog—both found at thecaregiversjourney.com. We also offer downloadable worksheets and guides to go along with podcast topics. Sue has written a wonderful book on caregiving, and we have an online course available as well. Everything we offer is focused on making dementia caregiving more manageable, accessible, and compassionate.
Where can readers find your book and continue following your work online?
You can find the book on Amazon or directly through our website by visiting the “Learn” section at www.thecaregiversjourney.com. There, you’ll also find our guides, worksheets, and online caregiving course. In addition to the book, we host a blog and podcast—The Caregiver’s Journey—which is available on all major streaming platforms. Whether you’re just beginning or deep into the caregiving journey, we’re here to support and walk alongside you every step of the way.
Thank you so much, Nancy, for sharing your knowledge and experience. I know your insights will be incredibly helpful to so many of our readers.
Thank you, Stacey. It means so much to be able to share this, and I’m truly grateful for the opportunity. Thank you for helping us get the word out and support caregivers everywhere.
