Don’t tell them they’re confused: the craft of dementia care, in carers’ own words

Ask an experienced dementia carer what they actually do all day and you rarely get a clinical answer. You get a set of verbal habits: never tell someone they are confused, go along with the thing that is not true, and notice the small changes nobody else in the house has spotted yet. Carers mention these to us almost as asides, as though they were obvious. They are not obvious, and they are worth writing down.

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Don’t tell them they’re confused

A live-in carer starting a new placement described her rule to our team in a single line. When her client loses the thread, forgets a name, or asks the same question for the fifth time, she never names what is happening.

Don’t tell people with dementia they are confused. I said, “No, you’re just tired. Rest a bit.”

It sounds small. It is close to the whole technique. “You’re confused” tells someone their mind is failing at the moment they are least able to hear it, and it usually starts an argument that nobody can win. “You’re tired” is kind, plausible and often at least partly true. It explains the gap without frightening the person, and it gives them something to do about it: sit down, have a cup of tea, start again in ten minutes.

Carers who are good at this are not lying. They are choosing which true thing to say out loud.

Swaps carers use every day

• Instead of “you’ve asked me that already”, try “of course, let me tell you again”.
• Instead of “you’ve lost it again”, try “let’s have a look for it together”.
• Instead of “she died years ago”, try “tell me about her”.
• Instead of correcting a date, answer the feeling underneath the question. Someone asking when their mother is coming usually wants comfort, not a diary.

This is also why language matters more than families expect. Reframing is quick, improvised, conversational work, and much harder in a second language under pressure. For some households a shared first language stops being a nice-to-have and becomes part of the care itself, as we set out in when a carer’s first language is a clinical requirement.

Go with it, and let it tire itself out

One live-in carer looked after a man who had become certain he had sold the house and needed to leave it. He said it at breakfast, said it again at lunch, and stood by the front door with his coat on. Explaining that the house was still his made him more determined, not less. So she stopped explaining.

He kept saying it, so I said okay, let’s go. He spent about two hours at the park, and then he said, can we please go home, because I’m feeling tired.

Two hours at a park is not a wasted afternoon. It is a technique. The belief did not need correcting, it needed somewhere to go, and once it had been walked out, home became the thing he wanted rather than the thing being imposed on him. It works because agitation is physical as well as mental, and it burns off.

It has limits. Going along only works when going along is safe, and a belief that frightens rather than merely misleads may need a different response. Anything new or escalating is worth mentioning to the GP rather than managing quietly at home.

Dementia is also not one thing. A son described his father, a man in his nineties, folding television storylines into his own memories, so a plot from the night before came back as something that had happened to him. Sometimes that was sweet, he told us, and sometimes frustrating. Knowing which type of dementia you are dealing with changes what you expect from a day.

The evening is a different person

Carers watch the clock the way other trades watch the weather. A carer taking on a new package told us her client was settled in the mornings and unrecognisable by early evening: resistant, agitated, unwilling to follow the routine the family had set, and awake again long before dawn.

That’s dementia, I’m afraid. You never know what you’re getting into.

Late-day agitation has a name, sundowning, and recognising it is half the battle, because it stops the family reading it as deliberate difficulty. The nights are their own subject, and we have covered them separately in what dementia at home actually looks like at 3am.

Evenings are also when people leave. Another carer described a client who walked out alone one Saturday, probably in pain and off her usual routine, and the family only found out two days later, from a neighbour.

How would we know? I didn’t know until this happened.

That gap is avoidable. Agree in advance who gets told, how quickly, and by what method if the person leaves the house alone, and write it into the care plan rather than improvising on the day.

Noticing is the core skill

The most useful thing a good carer does is often not a task at all. One live-in carer gave our team a long, careful handover about an elderly woman who had been losing weight for months with no obvious cause. The carer worked out why: the fortified drinks meant to top up her nutrition were being quietly poured away when nobody was watching, and the prescription for them had lapsed anyway. Sorting it out also turned up a painful gum problem, which explained a lot about the eating, and an anaemia investigation.

None of that is diagnosis. All of it is noticing, and then telling someone.

What carers tend to spot first

• Clothes and rings getting loose, long before the scales are mentioned.
• Food scraped into the bin, or drinks poured away, cooling untouched, or hidden.
• A change in gait, a new lean, a hand that reaches for furniture that was not needed last month.
• Sore gums, avoiding certain textures, or chewing on one side only.
• New word-finding trouble, a droop, a weak grip, a change that arrived overnight rather than gradually.
• Loss of interest in something previously loved, which often precedes everything else.

A carer who is in the house every day sees the baseline. A visiting relative sees the good hour, and a GP sees ten minutes of best behaviour. That is why a carer’s observation is often the earliest reliable signal in the house, and why it belongs in front of a GP or district nurse rather than in a text thread. Poor appetite and weight loss in particular deserve early attention, as we set out in what happens when the elderly don’t eat enough.

Say it once, then write it down

Noticing only helps if the observation survives the conversation. A carer called us recently, anxious, because she believed her client had had a minor stroke and had twice been waved away by one of the daughters.

I’m not a doctor, but something is not right.

What she wanted was not an argument. She wanted a formal record made, and she wanted to be part of the conversation before anybody rang the family.

That instinct is right, and it applies to both sides of the relationship. If you are a carer, put the concern in writing on the day, dated, factual, describing what you saw rather than what you concluded, and keep your own copy. If you are a family member, treat a carer’s concern as information rather than as criticism of your judgement. You can decline to act on it, but you cannot get the early warning back.

The same discipline applies to medicines. One carer described being told by another carer, wrongly, not to sign the medication chart, and refusing to go along with it.

I’m not here to train people, but the medication, that’s a reportable incident.

Another described separating shop-bought remedies from the prescribed dosette box, because a muddled record leads a doctor to the wrong conclusion. “I don’t want the doctor to end up prescribing something which you don’t need.” The rule is simple. Record what was given, sign for it, and raise gaps rather than tidying them away. Our guide to medication administration covers good practice at home.

All of it reaches the next carer through the handover, which is where dementia care quietly succeeds or falls apart. Write down what settles the person, what starts an argument, the words that work, the time of day everything changes, and what the GP has already been asked. There is more on why that matters in getting a parent to accept a carer, and the handover that ruins everything.

The craft costs the carer something

Reframing, redirecting and staying warm through the fifth repetition of the same question is skilled emotional labour, and it runs out. One carer told us her client cried and shouted every single time she stepped out for her break.

Don’t leave me on my own. You’re being nasty to me.

She could do it for a while, she said, but not indefinitely. Another live-in carer, on an otherwise smooth placement, asked us to raise with the family that no rest time had been built into her role at all. Families are rarely being unkind about this. They simply have not thought about it, having just handed over a job they were drowning in.

Break time is not a perk. It is what keeps the good technique available at 7pm. Build it in from the start: a defined daily break, agreed cover for it, and an honest conversation about whether the person can safely be left. If nobody can cover it, that is a real cost of the package and needs planning. There is more on this in downtime is not free time.

What to do next

1. Write the words down. Keep a short page in the care plan listing the phrases that settle the person and the ones that start an argument, so every carer, relative and visitor uses the same script.
2. Agree the escalation route now. Decide who is called, how fast, and in what order if the person leaves the house, falls, or seems suddenly different, and put it somewhere visible.
3. Treat carer observations as clinical information. Log them, date them, and take them to the GP or district nurse rather than debating them in the family group chat.
4. Build the break into the job. Before a live-in placement starts, agree the daily break, who covers it, and what happens on the days nobody can.
5. Be specific when you look for a carer. If you post a job, describe the evenings, the night waking and the repeated questions honestly, and ask applicants how they would handle each one.

PrimeCarers checks carers’ identity, right to work and DBS documents, and carers complete our onboarding, but dementia experience is something you should test for yourself in conversation and in a trial visit.

PrimeCarers is an introductory platform and does not provide, manage, supervise or clinically assess care. Clients remain responsible for checking carer documentation, interviewing carers, checking suitability for their specific needs, and agreeing the scope of care directly with the carer.

Related reading

• It’s the nights: what dementia at home actually looks like at 3am
• Downtime is not free time: what live-in care actually asks of a carer
• Managing clients with dementia
• What are the signs that dementia is getting worse?