How to visit someone with dementia

Families often tell us that visiting has become the hardest part. Not the logistics — the visit itself. You arrive with news and photographs and leave feeling you have failed at something.

Some of that is unavoidable grief. Quite a lot of it, though, comes from visiting in a way that worked when your mother was well and does not work now.

Go at her best hour, not your convenient one

Almost everyone with dementia has better and worse times of day, and for many people the late afternoon and early evening are the worst of it. Ask the staff when your mother is at her brightest and visit then, even if it is awkward. A good twenty minutes at ten in the morning beats a difficult ninety minutes at six in the evening for both of you.

Shorter and more often beats long and rare

A visit does not have to be an event. Twenty minutes, twice a week, with no agenda, is easier to sustain and easier to endure. Long visits run out of conversation and then run into distress.

Do not test her

The reflex is to check: Do you know who I am? Do you remember what we did yesterday? Do you know what day it is? Every one of those questions is an exam with a failing grade attached, and she can feel the failure even when she cannot place the reason.

Say your name instead of asking for it. “Hello Mum, it’s Sarah” costs nothing and removes an entire category of distress from the visit.

Follow the feeling, not the facts

If she says she needs to get home to see her mother, the factual answer is cruel and it does not help. Arguing with a memory never wins; it only adds frustration to confusion.

Answer what she is feeling rather than what she said. You’re missing her. Tell me about her. Let’s sit here a minute and then we’ll see. This is not lying to her, and it is not condescension. It is answering the part of the sentence that is actually true.

Bring something to do with your hands

Conversation is hard work and it is often the first thing to go. Almost anything shared is easier: old photographs, a hand cream, folding towels, a hymn, a bowl of strawberries to top, a walk to the end of the garden and back. Music reaches people long after words stop, and songs from someone’s twenties reach furthest.

Expect to be mistaken for someone else

You may be your father. You may be a sister who died thirty years ago. You may be a nice woman who has come to help. It is a blow every time and there is no technique that removes it.

What helps a little is remembering that being loved and being identified are not the same thing. She is pleased you are there. The filing system is what is damaged, not the affection.

When a visit goes badly

Some will. She will be agitated, or she will ask you to leave, or she will cry and you will not know why. That is the illness and not a verdict on you.

Tell the staff before you go — they will want to know, and they will often be able to tell you what else was happening that day. Then let somebody who is not in the middle of it hear about your afternoon, because the people doing this work are almost always more depleted than they admit.

And go

The most common thing we hear from families a year in is that they wish they had visited more in the early stages, when conversation was still possible. Not longer. More often.