Dementia care that works

Cue 1 Four dementia types compared across onset, memory, hallucinations and behaviour.

AMARA 00:00 Most dementia training I have sat through starts with the types of dementia and spends half the session there.

NADIA 00:07 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 00:17 Go on.

NADIA 00:18 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 00:33 And the other two?

Cue 2 Lewy body warning card in red: antipsychotic sensitivity.

NADIA 00:34 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 00:48 Which is presumably why it gets misread.

NADIA 00:51 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 01:03 You said one detail matters more than the rest.

NADIA 01:06 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.

Cue 3 Delirium versus dementia timeline showing hours to days against months to years.

AMARA 01:18 Fatal.

NADIA 01:18 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 01:35 Let us talk about delirium, because you have raised it before.

NADIA 01:39 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 01:52 How do I tell the difference?

Cue 4 Unmet needs pyramid: body, environment, psychological, behaviour last.

NADIA 01:54 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 02:11 Now the part I actually want. Distressed behaviour.

NADIA 02:14 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 02:28 How do I find the need?

NADIA 02:30 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.

Cue 5 Behaviour clock chart showing clustering at one hour with a life history overlay.

AMARA 02:42 Then?

NADIA 02:42 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 02:56 And how often is it the first list?

NADIA 02:59 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 03:20 Any practical detective work?

Cue 6 Antipsychotic review prompt: started March, still running October.

NADIA 03:22 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 03:46 Last section. What actually works?

NADIA 03:48 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 04:04 Which agencies and turnover make almost impossible.

NADIA 04:06 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 04:17 And antipsychotics?

NADIA 04:18 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 04:36 What is my part in that, though? I do not prescribe.

NADIA 04:40 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.

Cue 1 Three responses to a false belief: correct, lie, validate, with outcomes.

AMARA 05:02 She asks for her mother, who died forty years ago. What do I say?

NADIA 05:08 There are three options and only one is any good. Correct her, and she learns her mother is dead, freshly, every single time you do it.

AMARA 05:18 That is cruel.

NADIA 05:20 It is unintentionally cruel, which is why it is so common: people think honesty requires it. Second option, lie. Yes, she is coming, a taxi is on its way. That damages trust and it eventually gets found out.

AMARA 05:35 And the third?

Cue 2 White toilet on white wall, then with a contrasting seat.

NADIA 05:36 Respond to the feeling underneath. Tell me about your mother. And now you are having a conversation she can win instead of one she loses.

AMARA 05:46 How do I know what the feeling is?

NADIA 05:49 It is nearly always in the sentence. She has to get home because the children need her. That is: I am needed somewhere and I am anxious. And that you can actually do something about.

AMARA 06:03 Anything I should stop saying?

NADIA 06:05 Do you remember. It is a test, it produces failure, and failure produces distress. Supply the information instead. I am Amara, I helped you at breakfast.

Cue 3 Shiny floor read as wet and a dark mat read as a hole.

AMARA 06:16 Let us talk about the environment. Ours is quite nicely decorated.

NADIA 06:20 Decoration is not the question. Contrast is. What colour is your toilet?

AMARA 06:25 White. Against a white wall and floor.

NADIA 06:28 Then some of your residents genuinely cannot see it. Age related visual change reduces contrast sensitivity, and a white object on a white background disappears.

AMARA 06:38 We have people we describe as incontinent.

Cue 4 Noise sources stacking: conversations, television, call bell.

NADIA 06:40 Some of whom may have a visibility problem rather than a continence problem. A contrasting toilet seat costs about fifteen pounds and it has solved that in a lot of services.

AMARA 06:53 What else is doing damage without us noticing?

NADIA 06:56 Shiny floors, which read as wet, so people stop dead or edge round them. Dark mats, which read as holes, so people step over them and fall. And noise.

AMARA 07:08 Noise?

NADIA 07:08 Three conversations, a television nobody is watching, and a call bell. With impaired auditory processing that is genuinely disabling. Turning the television off is a clinical intervention, and nobody writes it in a care plan.

Cue 5 Walking with purpose mapped against a life history and the clock.

AMARA 07:22 What about walking? We have residents who walk constantly.

NADIA 07:26 It used to be called wandering, which was a poor word because it implies aimlessness. They are going somewhere. Find out where.

AMARA 07:34 How?

NADIA 07:35 The life history and the clock. It is usually work, children or home, at the hour that thing used to happen. And then the answer is a safe route to walk and something meaningful at that time, not a chair and a distraction.

AMARA 07:52 Late afternoon is our worst time.

Cue 6 A family given a task, and the life history improving the care plan.

NADIA 07:54 It usually is, and it is several things at once. Tiredness, falling light, staff changeover, hunger, and a lifetime of four o'clock meaning collect the children.

AMARA 08:05 So what do I change?

NADIA 08:07 Put the light on before it starts, not after. Reduce demands at that hour. And put the familiar activity there instead of the bath, because a bath at four o'clock is a fight you have chosen.

AMARA 08:21 Last thing. Families are angry with us.

NADIA 08:24 Often, and it is very rarely actually about you. They are grieving somebody who is still alive, which has no ritual and no permission attached to it, and the anger has nowhere else to go.

AMARA 08:38 What helps?

NADIA 08:39 Give them something to do. Help at mealtimes, bring the music she liked, fill in the life history. They stop being redundant visitors, and your care gets better because you now know she worked nights for thirty years. Both of those are true at once, and it costs nothing.