Why Dementia Doesn’t Always Follow the Stages—and How to Adjust Care

When you’re caring for someone with dementia, it’s natural to turn to “stages” for guidance. The problem? Dementia doesn’t always follow a neat, predictable path. Your loved one might skip a stage, stay in one for years, or show symptoms that don’t match the charts at all. The truth is—dementia is different for everyone, and that’s why a flexible approach to care matters.

Here’s how to recognize the limits of traditional stages and adjust your approach so your loved one gets the right support at the right time.

Recognizing the Limitations of Traditional Staging Models

Most dementia staging models were created with Alzheimer’s disease in mind, focusing mainly on memory decline and predictable phases of progression.

But if your loved one has another type of dementia—like frontotemporal, Lewy body, or vascular dementia—you might notice symptoms that don’t fit neatly into those stages. For instance:

• Frontotemporal dementia (FTD): behavior and personality changes, difficulty with speech

• Lewy body dementia: vivid hallucinations, movement issues

• Vascular dementia: slowed thinking, trouble planning or organizing

If you’re confused because your loved one doesn’t “match the stage,” you’re not doing anything wrong—the model itself just doesn’t tell the full story.

👉 Care tip: Think of stages as a general roadmap, not a strict rulebook. Use them for guidance, but stay tuned in to your loved one’s unique experience.

Identifying Diverse Symptoms of Dementia

Not all dementias start with memory loss. Some begin with mood shifts, movement challenges, or even changes in judgment and decision-making.

As a caregiver, becoming familiar with the wide range of possible symptoms can help you better anticipate your loved one’s needs. For example:

• A person with FTD may act impulsively or lose their social filter.

• Someone with Lewy body dementia may seem fine one moment, then confused or unsteady the next.

• With vascular dementia, you might notice more difficulties with problem-solving than with memory.

By recognizing what’s happening, you can avoid frustration and respond with patience and empathy.

👉 Care tip: Keep a running log of new or changing symptoms. This not only helps you understand your loved one better, but also gives doctors a clearer picture of what’s happening.

Staying Flexible in Your Caregiving Approach

Dementia doesn’t progress in a straight line. Some days may feel stable; others may bring sudden new challenges. That’s why flexibility is one of the most important skills you can develop as a caregiver.

Instead of sticking to a rigid plan, try adjusting based on how your loved one is doing that day. This might mean:

• Simplifying daily routines when they’re overwhelmed

• Redirecting instead of arguing if they’re upset

• Adjusting communication styles as speech becomes harder

Flexibility helps reduce stress for both of you and ensures your care adapts as their needs change.

👉 Care tip: Ask yourself, What does my loved one need right now? rather than What stage are they in? This shift helps you respond to the present moment instead of getting stuck on the chart.

Communicating Effectively with Healthcare Professionals

Doctors often rely on staging models to guide care. While these can be useful, they don’t always capture the full picture.

As a caregiver, you play a critical role in filling in the gaps. Share:

• New or unusual symptoms you notice

• Changes in behavior or mood

• Practical challenges at home that affect daily living

👉 Care tip: Bring a written list of observations to appointments.The more detail you provide, the better equipped healthcare providers will be to tailor treatment and support to your loved one’s unique situation.

Creating a Personalized Care Strategy

Because dementia looks different for each person, caregiving should never be one-size-fits-all. A personalized care plan makes all the difference.

This might include:

• Adjusting routines to match energy levels

• Creating a safe environment tailored to specific risks (like falls or wandering)

• Building in activities your loved one still enjoys and can succeed at

• Incorporating professional support like occupational therapy, speech therapy, or respite care

Personalized care respects your loved one’s individuality while helping you manage symptoms more effectively.

Final Thoughts

Dementia care can feel overwhelming, especially when your loved one’s symptoms don’t match the “typical” progression you’ve read about. But remember: it’s not about fitting their journey into a chart—it’s about adapting to what they need in the moment.

By recognizing the limits of traditional staging, staying alert to diverse symptoms, being flexible, communicating openly with healthcare professionals, and personalizing care, you’ll be better prepared to support your loved one with compassion and confidence.

✨ If this post resonated with you, I’d love to stay connected.

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