By Kari Baker, CDP | High Country Senior Advisors | Flagstaff, Arizona
There is a saying that circulates in dementia care circles, usually passed from one clinician to another with a knowing nod:
If you've met one person with dementia — you've met one person with dementia.
It sounds like a riddle. It is actually one of the most important things a caregiver can understand.
Dementia is not one disease with one presentation. It is an umbrella term covering dozens of conditions — Alzheimer's disease, Lewy body dementia, vascular dementia, frontotemporal dementia, and more — each of which affects the brain differently, progresses differently, and demands a caregiving response that is entirely specific to the person in front of you. What works beautifully for one family may be completely wrong for another. What looks like stubbornness in one person may be terror in another. What appears to be a behavioral problem may actually be a communication — the only one left available to someone whose words have been taken from them.
This week reminded me of that truth twice, in two very different rooms.
A man I'll call David
I have been working with a family navigating Lewy body dementia — one of the most misunderstood and misdiagnosed forms of the disease. Lewy body presents very differently from Alzheimer's. Cognitive fluctuations can be dramatic and unpredictable. Visual hallucinations are common and feel entirely real to the person experiencing them. And in many cases, personality changes emerge that look nothing like the gentle confusion most people associate with dementia.
For this family, the presenting challenge is paranoia and impulsivity. The man I'll call David has become convinced at times that the people around him mean him harm — that familiar faces are strangers, that his home is not his home, that something is wrong in a way he cannot name but cannot shake. And when that fear takes hold, he acts on it. Not out of malice. Out of terror.
The safety implications are real and serious — for David and for those around him. And the caregiving response required is nothing like what his family expected when they first heard the word dementia. They expected confusion and forgetfulness. They were not prepared for the fear, the unpredictability, or the way it shifts hour to hour.
Lewy body dementia demands a specific kind of expertise — an understanding of why the hallucinations are happening, how to respond in ways that reduce fear rather than escalate it, and how to create an environment that feels safe enough for a brain that no longer processes safety reliably. Cookie-cutter dementia advice does not work here. Generic reassurance does not work here. What works is knowing this disease, knowing this person, and building a response that meets both.
A woman I met at a support group
The second moment came at a caregiver support group earlier this week.
A woman walked in crying. She has Parkinson's disease herself — a progressive neurological condition that affects her movement, her stamina, and her daily functioning. And she is the primary caregiver for her husband, who has Alzheimer's.
She is caring for him while managing her own illness. She is watching him change while her own body changes. She is trying to keep someone else safe while navigating the unpredictability of her own health.
Her husband's Alzheimer's has its own particular texture — the way he communicates, the things that agitate him, the rhythms of his better and harder hours. But the caregiving challenge here is inseparable from her reality as well. Because the question is not only what does he need — it is also what can she sustain? What adaptations make caregiving possible for a caregiver whose own capacity is limited and precious? How do you build a care plan for a couple, not just a patient?
My heart broke for her in the best possible way — the way that happens when you see someone carrying something enormous with extraordinary grace, and you want nothing more than to help them put some of it down.
Why this matters for your family
If you are caring for someone with dementia — or supporting a family who is — I want you to take this in:
The strategies you read about online may or may not apply to your loved one. The advice your neighbor gives you, based on their experience with their mother, may be completely wrong for your father. The approach that worked last month may stop working next month. This is not failure. This is the nature of the disease.
Dementia care is not a protocol. It is a practice — one that requires ongoing observation, flexibility, and the willingness to ask for help when what you are doing is no longer working.
What I do as a Certified Dementia Practitioner is not hand families a checklist. It is sit with them in the specific reality of their specific person, understand what that disease is doing in that particular brain, and help them build a response that actually fits. For David's family, that means understanding Lewy body and what fear looks like when it has no language. For the woman at the support group, that means building something sustainable for a caregiver who is also a patient.
Every person. Every time.
If you are in the middle of a dementia journey and what you are doing is not working — or you are not sure what to do next — that is exactly what I am here for. Remote coaching is available by phone or video, anywhere in Arizona and beyond. First conversation is always free.
Call or text: 480.789.1058
Email: kari.baker@highcountryseniors.com
Web: highcountryseniors.com
