When Everything You Thought You Knew About the Diagnosis Changes

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The map you've been following just got redrawn—and you're wondering if you can still find your way.

You thought you finally understood what you were dealing with. You'd learned the vocabulary, adjusted your expectations, figured out care strategies that actually worked. You'd made peace with the diagnosis—or at least begun to.

And then the neurologist says something that changes everything.

"Actually, we're now seeing signs of vascular dementia in addition to the Alzheimer's." Or "The initial diagnosis may not have captured the full picture." Or the hardest words of all: "We're not entirely certain what we're dealing with."

Suddenly, the ground beneath your feet feels unstable again. The care approaches you've carefully developed might not fit anymore. The timeline you'd imagined shifts. The future you were preparing for looks different than it did last month.

Here's what I need you to know: a changing or evolving diagnosis doesn't mean you've been doing anything wrong. It means dementia is complex, diagnostics are imperfect, and medical understanding sometimes catches up slowly to what's actually happening in someone's brain.

You're not starting over. You're building on everything you've already learned—with new information that can actually help you provide better care. Let me show you how to navigate this unsettling transition with clarity and confidence.

Understanding Mixed Dementia Diagnoses

Mixed dementia is far more common than most people realize—some studies suggest that up to 45% of people with dementia actually have more than one type occurring simultaneously. Yet it's rarely the initial diagnosis, partly because it's difficult to identify in early stages and partly because diagnostic tools aren't always sophisticated enough to catch multiple processes happening at once.

What mixed dementia really means is that two or more disease processes are affecting the brain simultaneously. Most commonly, this involves Alzheimer's disease combined with vascular dementia (damage from reduced blood flow to the brain), but it can also include Lewy body dementia, frontotemporal dementia, or other forms occurring together.

Why you might be hearing about it now: In early stages, one type of dementia often dominates the symptom picture, masking the presence of others. As the disease progresses, additional symptoms emerge that don't quite fit the original diagnosis. Or new imaging reveals changes that weren't visible before. Sometimes it's simply that your loved one's presentation has become clearer over time, allowing doctors to see a more complete picture.

The important thing to understand is that mixed dementia isn't necessarily "worse" than a single diagnosis—it's just more accurate. And accuracy helps you understand what you're seeing and respond more effectively.

What this means for care: Mixed dementia often explains symptom patterns that seemed confusing with a single diagnosis. That person who has classic Alzheimer's memory loss but also experiences sudden changes in cognition or obvious difficulty with specific thinking tasks? The vascular component might explain those variations. Someone whose personality changed dramatically early on but is now showing more typical Alzheimer's progression? Frontotemporal features combined with Alzheimer's pathology could be at play.

Understanding the specific combination affecting your loved one helps you anticipate challenges, adjust your approach, and stop feeling like you're somehow failing when their symptoms don't match what you've read about "typical" dementia progression.

Navigating Diagnostic Uncertainty

Sometimes the challenge isn't that the diagnosis changed—it's that there isn't a clear diagnosis at all. Your loved one clearly has dementia, but the doctors use phrases like "atypical presentation" or "we need more time to see how this unfolds" or the incredibly frustrating "it could be several things."

This uncertainty feels unbearable. You want answers. You want a roadmap. You want to know what you're preparing for and how to help. Instead, you're living in diagnostic limbo, and it's exhausting.

Here's the truth about diagnostic uncertainty: Even with advanced imaging, comprehensive testing, and specialist evaluations, some dementia presentations remain genuinely difficult to classify, especially in earlier stages. Different types of dementia can look remarkably similar at certain points. Some people have uncommon variants that don't fit neatly into established categories. And dementia itself is a syndrome—a collection of symptoms—that can be caused by many different underlying conditions, some of which only become clear over time.

This doesn't mean your doctors aren't competent. It means brain science has limits, and sometimes patience is the only diagnostic tool available.

How to care well without diagnostic certainty: The good news is that many fundamental principles of dementia care work across different types. You don't need a perfect diagnostic label to:

• Create a calm, predictable environment

• Communicate with clarity and patience

• Focus on remaining abilities rather than losses

• Maintain dignity and connection

• Adjust expectations to current reality

• Implement safety measures

• Prioritize comfort and quality of life

What you might need to do differently is stay more flexible in your approach. If you don't know whether behavioral symptoms stem from Alzheimer's, Lewy body disease, or frontotemporal degeneration, you'll need to experiment more with different strategies and pay close attention to what actually helps.

Questions to ask your doctor that are more useful than "What exactly is this?":

• What symptoms should we monitor most carefully?

• Are there specific medication risks we should be aware of given the diagnostic uncertainty?

• What changes would prompt you to reconsider the diagnosis?

• What care strategies tend to work well regardless of the specific type?

• How often should we reassess?

Adjusting Care Approaches With New Information

When the diagnosis changes or becomes clearer, some of what you've been doing might need to change too. This feels overwhelming when you've finally gotten into a rhythm, but it's also an opportunity to understand your loved one's experience more accurately and respond more effectively.

Start by reviewing what's been working: Before you change everything, identify the strategies that are genuinely helping. A lot of good dementia care is universal—consistency, patience, sensory comfort, maintaining routine. Those approaches don't need to change just because the diagnostic label did.

What you're looking for are the places where your current approach isn't quite working—the strategies that seemed like they should help but don't, the symptoms that feel unpredictable, the times when your loved one's response surprises you.

Research the specific implications of the new or additional diagnosis: Each type of dementia has particular patterns worth understanding:

• Vascular dementia often involves step-wise decline rather than gradual progression, greater variability in functioning from day to day, and more preserved personality early on but potentially more dramatic changes after strokes or vascular events

• Lewy body dementia typically includes significant fluctuations in alertness and cognition, visual hallucinations, REM sleep behavior disorder, and extreme sensitivity to antipsychotic medications

• Frontotemporal dementia frequently involves personality and behavior changes before memory loss, difficulty with executive functioning and judgment, and language problems

• Mixed presentations combine features of multiple types, which explains why some symptoms fit one category while others don't

Understanding these patterns helps you anticipate challenges and adjust your caregiving approach accordingly.

Adjust expectations and timelines: Different types of dementia progress at different rates and along different trajectories. If vascular dementia is part of the picture, aggressive management of cardiovascular risk factors (blood pressure, diabetes, cholesterol) might slow progression more effectively than it would with pure Alzheimer's. If Lewy body dementia is involved, you might see more pronounced day-to-day variation than you were expecting, which means planning needs to accommodate both better and worse days.

This isn't about giving up hope—it's about matching your expectations to reality so you can prepare effectively and avoid constantly feeling blindsided.

Medication review: Some medications work better for certain types of dementia, and some medications that are safe for one type can be dangerous for another. A changing diagnosis absolutely warrants a thorough medication review with the prescribing doctor. Lewy body dementia in particular requires careful attention to medication sensitivities, especially avoiding typical antipsychotics.

Communication adjustments: Different types of dementia affect communication in different ways. Frontotemporal variants might require more direct, concrete language earlier than Alzheimer's typically would. Vascular dementia might mean working around specific language processing difficulties. Lewy body dementia might mean adapting to significant fluctuations in your loved one's ability to engage in conversation.

Pay attention to what actually works rather than what you think should work based on the old diagnosis.

The Emotional Impact of Changing Diagnoses

A changing diagnosis can feel like grief all over again. You'd adjusted to one reality, made peace with one trajectory, built your coping strategies around one set of expectations. Now everything shifts, and you're emotionally back at square one—except you're also exhausted from everything you've already been through.

You have every right to feel frustrated, scared, and overwhelmed. You might feel angry at the medical system for not getting it right the first time. You might feel betrayed by your own understanding of the situation. You might feel that hard-won sense of mastery slipping away as you realize some of what you learned might not fully apply anymore.

These feelings are completely valid. A changing diagnosis isn't just an intellectual update—it's an emotional earthquake.

The grief is real: You might need to grieve the future you'd imagined based on the original diagnosis. If the timeline changes, if new symptoms become likely, if the care trajectory looks different than you'd prepared for—you're losing something. That loss deserves acknowledgment.

Give yourself permission to feel that grief without judging yourself for it. You're not being dramatic. You're not failing at acceptance. You're human, and humans struggle when the ground keeps shifting beneath their feet.

The uncertainty is its own burden: Not knowing what to expect, how to plan, or what's coming next creates a particular kind of anxiety. You can't prepare for everything when you don't know what "everything" might include. This ambiguity is genuinely difficult to live with, and it's okay to name that difficulty.

What helps is accepting that uncertainty as a reality you're living with rather than a problem you need to solve immediately. You can't eliminate the unknowns, but you can build resilience and flexibility that allow you to adapt as things become clearer.

Connection helps: Talk about this with people who understand—whether that's a support group, a counselor who specializes in caregiver issues, or trusted friends who won't minimize what you're going through. The isolation of feeling like you're the only one struggling with diagnostic confusion makes everything harder.

You might also find it helpful to connect with other caregivers dealing with the same type or combination of dementias. Their lived experience can provide insights and reassurance that medical explanations alone can't offer.

Remember what hasn't changed: Your love for this person. Your commitment to their dignity and comfort. Your capacity to learn and adapt. Your courage in showing up every day despite the difficulty. The connection between you. These fundamental truths remain constant regardless of what diagnostic label gets applied or revised.

The diagnosis might change, but your love doesn't. Your care doesn't. Your worthiness as a caregiver doesn't. Hold onto that.

A changing or evolving diagnosis feels like starting over, but you're not actually beginning from scratch. Every insight you've gained, every adjustment you've made, every moment of connection you've created—all of that knowledge remains valuable. You're building on that foundation, not abandoning it.

The medical uncertainty is real, and the emotional impact of diagnostic changes is significant. You don't have to pretend this is easy or that you're not shaken by having to adjust your understanding yet again.

But here's what I've learned through my own journey and through walking alongside countless other caregivers: flexibility is more valuable than certainty. The caregivers who navigate this path most successfully aren't the ones who had perfect diagnoses from the beginning—they're the ones who learned to adapt, who paid attention to the person in front of them rather than clinging to diagnostic labels, who remained curious and compassionate even when confused.

You can be that caregiver. You already are.

The diagnosis might be complex, mixed, uncertain, or evolving. Your loved one's needs might not fit neatly into the descriptions you've read. The path forward might look different than you'd imagined.

But you know this person. You see them. You're learning constantly what they need. And you're showing up with love and commitment even when everything feels uncertain.

That's what matters most.

Your Action Plan

This Week

Schedule a follow-up conversation with the diagnosing doctor. Prepare specific questions about what the diagnostic change means for care, medication, and progression. Ask for written resources about the specific type or combination of dementia you're now dealing with. If the diagnosis is uncertain, ask what symptoms to monitor and when to follow up.

Identify one care strategy that hasn't been working well. Now that you have new diagnostic information, can you understand why it wasn't effective? Research alternative approaches that might work better given the updated understanding of what's happening in your loved one's brain.

Acknowledge your emotional response. Journal, talk to a trusted friend, or simply sit with your feelings about this change. You don't have to have it all figured out or feel okay about it yet. Just name what you're experiencing.

This Month

Conduct a comprehensive medication review. Schedule an appointment specifically to discuss whether current medications are still appropriate given the diagnostic change. Ask about medication sensitivities specific to the newly identified type of dementia.

Adjust your care notebook or tracking system. Update it to reflect the new diagnosis and what that means for symptom monitoring. Note any new patterns to watch for, medication sensitivities to remember, or care strategies specific to this type of dementia.

Connect with others navigating the same diagnosis. Look for support groups (online or in-person) that focus specifically on the type or combination of dementia you're now dealing with. The lived experience of other caregivers can provide practical insights that medical information alone doesn't capture.

Review and update your care plan. Look at safety measures, communication strategies, daily routines, and future planning. What needs to change given your new understanding? What can stay the same because it's working regardless of diagnosis?

Ongoing

Stay flexible in your approach. Pay more attention to what actually works than to what should work according to the diagnostic label. Your loved one is the expert on their own experience, and their response to various strategies matters more than textbook descriptions.

Keep learning, but don't let research overwhelm you. You don't need to become an expert on every aspect of this diagnosis. Focus on learning what helps you provide better care right now. Let other questions wait until they become relevant.

Document patterns you notice. Track what helps, what doesn't, and what symptoms seem connected. This information will help medical professionals refine the diagnosis over time and will help you identify effective strategies more quickly.

Practice self-compassion when things don't go as planned. A complex or uncertain diagnosis means more trial and error, more adjustments, more unknowns. You're not failing when strategies don't work perfectly the first time—you're learning and adapting, which is exactly what this situation requires.

Revisit your support network. Make sure the people helping you understand that the situation has changed and you might need different kinds of support now. Don't hesitate to ask for what you need.

Remember: diagnostic labels help us understand and communicate, but they don't define your loved one or your caregiving journey. You're caring for a whole person whose experience is unique, regardless of what name we give to what's happening in their brain. Trust yourself, stay connected, and know that you're doing better than you think you are—even on the days when it doesn't feel that way.

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