Dementia Care at Home, in Full

Somebody with dementia in their own home has thirty years of habit holding them up: which drawer, which chair, which way the light falls at four o'clock. That is not sentiment. It is the single largest thing working in their favour.

Most of what is difficult about dementia at home is not the diagnosis. It is the gap between how somebody managed last year and how they manage now, and the fact that the gap moves. A week can be fine. The following Tuesday can be frightening for everybody in the house, and then Wednesday is fine again.

A familiar building carries a great deal of the memory that a person is losing. The route to the bathroom is in the feet before it is in the head. The kettle is where the hand expects it. Moving somebody into an unfamiliar building removes all of that at once, at the exact point in their life when they are least able to rebuild it. That is why a plan that keeps somebody at home for another eighteen months is worth a lot of effort.

On paper a dementia visit looks like the other services. The tasks are the vehicle; what the visit is actually for is underneath them.

• Prompting, not doing. What you can still do yourself, you should still be doing.
• Meals that are eaten. A plate left on the side is information, not a failure.
• Medication, within what the care plan allows, written down each time.
• Real company: a photograph album, a hymn, the football results.
• Noticing. Sudden confusion is an infection until it is proved otherwise.

What separates good dementia care from adequate dementia care is what happens when the person is somewhere other than the present. If somebody is waiting for their mother, who died in 1987, there are two available responses. One is to correct them. The other is to ask about their mother.

Correcting is the natural instinct and it is almost always the wrong move. It delivers a fresh bereavement, several times a day, to somebody who cannot retain the explanation but can retain the distress. Working with it is not lying and it is not humouring somebody: it is answering the feeling rather than the fact. Somebody who wants to go home when they are already home is usually saying that they do not feel safe, and the useful answer is to make the room feel safe.

This is trainable, and it is the part of the job we will spend the most time on with our carers. It is also the part families find hardest to do themselves, which is not a failing. It is much easier to be calm with somebody you are not frightened of losing.

Our job is to keep the day the same on the days when the family have run out of patience for keeping it the same. The shape of the day does more work than any single task in it, and it only works if the person delivering it is not tired of it.

That is why nobody is sent to anybody before they are trained for this, and why we would rather turn a piece of work down than send somebody who is not.