The walking was for something

Core symptoms and BPSD. Different diseases behave differently. Kitwood’s five needs. Humanitude and Validation. Reading what the behavior is trying to say.

One of the mistakes I made early was reading “difficult behavior” as difficult. A woman in the day room refusing to sit down, walking the corridor for the third time in an hour, insisting on going home even though she was home. I saw the walking. What I didn’t yet see was what the walking was for.

The framework that eventually turned that around, for me, was person-centered care. It came from a British psychologist named Tom Kitwood, and its basic move is simple. Whatever the person is doing, ask what unmet need it is signaling. Not “how do we stop this,” but “what is this telling us.”

Core symptoms, and the rest

Dementia’s symptoms divide into two categories. The core symptoms — memory loss, disorientation, difficulty with executive function — come directly from the brain damage. The other category, called BPSD (Behavioral and Psychological Symptoms of Dementia), is what happens when those core symptoms collide with the person’s own history, personality, environment, and how their body feels that day. Anxiety, hallucinations, wandering, agitation, depression, refusal of care. BPSD is where we can actually move the needle. It responds to how we hold the room.

Different diseases behave differently

Alzheimer’s disease is dominated by memory loss. Lewy body dementia comes with visual hallucinations, parkinsonian features, and daily fluctuation that can look like two different people in the same person. Vascular dementia progresses in steps, and often shows a patchy cognitive profile — one function preserved, another gone. Frontotemporal dementia often starts with disinhibition or repetitive behaviors. Reading which disease is in front of you changes how you approach the day.

What Kitwood asked us to do

Treat the person as a person. Enter their point of view. Meet the five psychological needs he named — comfort, attachment, inclusion, occupation, and identity. These sound abstract until you watch what happens when they’re missing. A person without comfort will pace. A person without inclusion will retreat. A person without occupation will do the same repetitive thing all day.

When BPSD shows up

Before we intervene, we look in three places. Body — is there pain, constipation, dehydration, a new medication side effect. Mind — is there fear, loneliness, some unfinished feeling. Environment — is it too loud, too bright, too crowded, is a stranger in the room. Most BPSD episodes turn out to be one of these, and often the one nobody is looking at. Pain, in particular, is under-recognized in people who can’t say “my hip hurts” the way they used to.

The basic approach in the room

Approach from the front, slowly. Meet their eyes. Speak low, short sentences. Don’t argue with a version of reality that isn’t yours. Don’t rush. Offer two options rather than an open question. And use nonpharmacological approaches — reminiscence, music, gentle activity — as first-line, not as decoration around a pill.

Two techniques worth knowing by name

Humanitude — “see, speak, touch, stand” — is a French approach that’s spread widely through Japanese facilities. It reframes each of those four verbs as a deliberate expression of the person’s worth. Validation therapy, developed by Naomi Feil, asks us to acknowledge the feeling behind what the person is saying, rather than correct the facts. Both are ways of doing what Kitwood asked us to do, in concrete, teachable moves.

Families

Behavior at home is often worse than behavior in the day center, because the family has years of prior expectations woven into every interaction. The single most powerful intervention for BPSD is often family education — helping them see the behavior differently, and giving them a little more breathing room. Dementia cafés, family peer groups, and young-onset dementia coordinators exist in most Japanese municipalities. Refer.

The move I keep coming back to: BPSD does not get suppressed. It gets translated. Read the story the person is telling with the only vocabulary they have left, and much of what looked like a problem turns out to be a message you can respond to.