Types, delirium, and reading distress as communication

Amara Most dementia training I have sat through starts with the types of dementia and spends half the session there.

Nadia And that is the least useful part, though a few details genuinely matter. Let me give you the ones that change what you do.

Amara Go on.

Nadia Alzheimer's, the most common, usually starts with recent memory and progresses gradually. Vascular dementia comes from damage to blood supply, often progresses in steps rather than smoothly, and early on hits processing speed and planning more than memory.

Amara And the other two?

Nadia Lewy body: fluctuating cognition, visual hallucinations that are often detailed and not frightening to the person, parkinsonism, disturbed sleep. And frontotemporal, which typically starts younger and affects behaviour, personality and language, with memory relatively preserved.

Amara Which is presumably why it gets misread.

Nadia Constantly. Frontotemporal dementia is regularly mistaken for a mental health problem, a midlife crisis, or a marriage falling apart. Families spend years being told the person has simply changed.

Amara You said one detail matters more than the rest.

Nadia Lewy body, and I want to say this as clearly as I can. People with dementia with Lewy bodies can have severe, sometimes fatal reactions to antipsychotic medication.

Amara Fatal.

Nadia Fatal. So if Lewy body dementia is known or even suspected, that gets flagged loudly, in the notes, at handover, and to anyone considering an antipsychotic. It is probably the single most important piece of information in the whole of dementia care.

Amara Let us talk about delirium, because you have raised it before.

Nadia Because it is missed most often in exactly this group. People with dementia are at high risk of delirium, and when they suddenly get worse, everybody says the dementia has progressed.

Amara How do I tell the difference?

Nadia Onset and fluctuation. Delirium comes on over hours to days, and consciousness and attention wander through the day. Dementia progresses over months and years with clear consciousness. Any sudden deterioration is delirium until proven otherwise, and it needs review the same day.

Amara Now the part I actually want. Distressed behaviour.

Nadia Then let me give you the principle first, because it does more work than any technique. Distress is communication. It is an unmet need expressed by somebody who has lost the words for it.

Amara How do I find the need?

Nadia Work outward from the body. Always start with the body. Pain. Infection. Constipation. Urinary retention. Hunger. Thirst. Needing the toilet. Too hot, too cold. Medication side effects. Sensory loss.

Amara Then?

Nadia Then the environment. Noise. Glare. Unfamiliar faces. Too many people. Shift change. Being rushed. And then the psychological: fear, boredom, grief, loss of role, loss of control, and shame at being helped with intimate care.

Amara And how often is it the first list?

Nadia Far more often than anyone expects. I would say most of the time. Which is why the sequence matters so much. If you start at the behaviour, you end up managing a person's distress. If you start at the body, you usually end up treating a urine infection and the distress disappears.

Amara Any practical detective work?

Nadia Chart the timing. Behaviour clustered at one time of day is a clue, not a coincidence. Look for the pattern by carer, by task, by room, by hour. And read the life history for what was happening at that hour in their working life. Somebody who worked in a school gets restless at three in the afternoon for a reason.

Amara Last section. What actually works?

Nadia NICE is clear that non pharmacological approaches come first. Personalised activity, not group activity for its own sake. Music that means something to that person specifically. Reminiscence. Exercise. Daylight. Structured routine. And more than any of those, consistency of staff.

Amara Which agencies and turnover make almost impossible.

Nadia Which is exactly why I say it. Continuity is a clinical intervention. It should be discussed in those terms, in staffing meetings, not treated as a nicety.

Amara And antipsychotics?

Nadia They carry increased risk of stroke and death in dementia. They have a place in a small number of situations, for the shortest time, with regular review, after other causes have been excluded. Not as a first response to a person who is distressed.

Amara What is my part in that, though? I do not prescribe.

Nadia Two things, and they are both significant. You provide the observations that make a good prescribing decision possible. And you are the person most likely to notice that a medicine started for two weeks in March is still running in October. Say so. That single question has got more people off antipsychotics than any national programme.