Can I tell you something I wish my family had understood much earlier?
All four of my grandparents lived with dementia, but dementia did not look the same in any of them. The changes were different. The pace was different. What each person needed from the people around them was different too.
Not all of them received a specific diagnosis beyond dementia, which is something many families experience. We knew things were changing, but we did not have much of a map. Most of the time, we were simply trying to keep up.
We were seeing the signals. We just did not know how to read them yet.
That experience is part of why the first step in The Signal Guide Navigation System™ is Know the Waters.
Before we decide what a behavior means or how to respond, we need some context. There are three parts to that context:
- Know the diagnosis.
- Know the person.
- Notice the moment.
We will not always have complete information in all three areas. That is okay. The goal is not to solve the person like a puzzle. It is to widen our view so we do not react to one small piece of a much bigger story.
1. Know the diagnosis
The word dementia is often used as if it tells us everything we need to know. It does not.
Dementia is a broad term. It tells us that changes in the brain are affecting thinking and everyday function, but it does not tell us which parts of the brain are changing, which abilities may be affected first, or what the path may look like over time.
Alzheimer’s disease does not usually look exactly like Lewy body dementia. Frontotemporal dementia can begin very differently from vascular dementia. Some people are living with more than one disease process at the same time, which may be called mixed dementia.
A specific diagnosis can help us make more sense of what we are seeing. It may explain changes that otherwise seem to come out of nowhere. It may also help families ask better questions, plan for likely changes, and recognize when something does not fit the person’s usual pattern.
But many families never receive that level of clarity. You may have been told only that the person has dementia. The diagnosis may have changed over time. You may still be trying to get someone to take your concerns seriously.
If that is where you are, you can still begin.
Work with the information you have. Keep asking questions. Pay attention to patterns. A diagnosis is useful context, but it is not permission you must wait for before you can support the person more thoughtfully.
2. Know the person
Even a very specific diagnosis gives us only part of the picture. It does not give us the whole person.
It cannot tell us whether someone has always hated mornings, needed quiet before they were ready to talk, or valued privacy and independence. It cannot tell us what work they were proud of, which responsibilities still feel like theirs, what makes them laugh, or what helps them feel safe.
Two people can share the same diagnosis and respond completely differently to the same approach.
One person may enjoy a busy room full of conversation. Another may have avoided crowds their whole life. One may be comfortable accepting help with dressing. Another may experience that same help as an intrusion, especially if a person they barely know enters the bedroom and begins giving directions.
The diagnosis may help explain why dressing has become harder. Knowing the person helps us understand why a particular approach may not fit.
This is where personal history, routines, relationships, culture, preferences, and past roles become important. You do not need to know every detail of someone’s life before you can help them. Sometimes one small piece of information changes the entire way we understand a situation.
3. Notice the moment
You can understand the diagnosis and know the person incredibly well, and today can still be different from yesterday.
Maybe the person did not sleep well. Maybe the room is louder than usual. Someone new may be helping them. The routine may have changed, the task may be happening at a different time, or several people may be giving directions at once.
Sometimes familiarity can lead us to explain away what we see:
“She has always been stubborn.”
“He does this every time we have an appointment.”
“That is just how she is.”
History can give us useful context, but it should not keep us from noticing what is different right now. A new response, a stronger response, or a familiar response in a new situation deserves another look.
The moment matters because the support a person needs can change from hour to hour. What worked yesterday may not work today, not because you failed, but because some part of the situation changed.
Looking beneath “I need to go home”
Let’s put all three questions around a phrase many care partners hear:
“I need to go home.”
Our first instinct is often to answer the words. We may say, “You are home,” “You live here now,” or “That house was sold years ago.” These statements may be factually correct, but facts alone may not address what the person is trying to communicate.
What does the diagnosis help us understand?
Changes in memory may mean the person does not remember moving into this home. They may recognize individual pieces of the room but be unable to put those pieces together well enough to feel certain about where they are. Their brain may also be drawing from an earlier period of life that feels more immediate to them.
That helps us understand why the words may be occurring. It still does not tell us what home means to this particular person.
What do we know about the person?
Are they picturing the house where they raised their children? Are they looking for their parents? Did they always leave work at this time to pick someone up? Does home represent a building, or are they trying to express a need to feel safe, settled, useful, or surrounded by familiar people?
We may not know the answer. Still, those questions lead us somewhere different than repeatedly correcting them.
What is happening in this moment?
Did this begin as the sun went down and the room became darker? Did visitors just leave? Is the television loud? Is the person tired, hungry, or uncomfortable? Did a shift change bring unfamiliar faces into the room? Was something familiar moved?
The same person may say “I need to go home” for a different reason tomorrow.
That is why there is no single perfect response. Sometimes acknowledging the feeling may help. Sometimes the person may settle while looking through photographs, sharing a familiar snack, moving to a quieter room, or doing something that feels purposeful. Sometimes nothing works right away.
Knowing the waters does not guarantee that we will say exactly the right thing. It gives us a better chance of responding to the need beneath the words instead of getting pulled into an argument about facts.
You do not need every answer before you can help
Sometimes you will not know the specific diagnosis. You may be a new care partner or staff member who knows very little about the person’s history. The moment may also be moving too quickly for a careful review of every possibility.
Know the Waters is not a test you have to pass. It is a reminder to use what you know, notice what you do not know, and stay curious about what the person’s response is telling you.
Start with these three questions:
- What do I know about the diagnosis?
- What do I know about this person?
- What is happening in this moment?
Together, those questions give us a place to begin.
Over the next several episodes of Navigating Dementia, we will explore common dementia diagnoses, stages, and the idea of retrogenesis. We will then spend more time on what it really means to know the person and how to notice the moment before moving into the next part of The Signal Guide Navigation System™: Drop Anchor.
Next, we are beginning with Alzheimer’s disease. We will talk about why it affects much more than memory and why two people with Alzheimer’s can still have very different experiences.
Notes
- Alzheimer’s Association. (n.d.). Dementia care practice recommendations. Retrieved September 27, 2026, from https://www.alz.org/professionals/professional-providers/dementia_care_practice_recommendations
- Alzheimer’s Society. (n.d.). Person-centred care. Retrieved September 27, 2026, from https://www.alzheimers.org.uk/get-support/help-dementia-care/person-centred-care
- Centers for Disease Control and Prevention. (2024, August 17). About dementia. https://www.cdc.gov/alzheimers-dementia/about/index.html
- National Institute on Aging. (2025, June 5). Understanding different types of dementia. https://www.nia.nih.gov/health/alzheimers-and-dementia/understanding-different-types-dementia
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ABOUT THE AUTHOR
Carlyn Lenfestey, PT, MPT, CDP, CADDCT, is a licensed physical therapist with 25 years of clinical experience and 15 years specializing in dementia care. She is the founder of A Better Way: Dementia Care Solutions, LLC, the creator of the Wheel of Function Framework™, and the host of the podcast, Navigating Dementia.
DISCLAIMER
The information provided in this blog is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.
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