Talk to Me, Not About Me

The doctor turns to your partner. The waiter asks your daughter what you would like. It happens fast after a diagnosis, and you are allowed to stop it.

Why does this happen?

Because people get uncomfortable and take a shortcut. Once there is a diagnosis, they talk to whoever seems easier to talk to.

Most people do not decide to ignore you. They glance at your partner because they are unsure what you understand, or because they want a quick answer, or because they feel awkward about the diagnosis. Each time, it moves you a little further out of your own life.

Researchers have watched this happen. A 2012 study in Patient Education and Counseling recorded 25 real first-time diagnosis visits for Alzheimer's disease. Conversations that looked like three-way talks were mostly a series of two-way exchanges. Over the course of the visit, the focus moved from speaking with the patient to speaking about the patient, or ignoring them. By the summary at the end, the doctor was mainly talking to the companion.

Does the way people talk to me matter too?

Yes. Talking down to someone changes how they respond, and it has been measured.

"Elderspeak" is the sing-song, simplified, overly familiar way some people talk to older adults: "Are we ready for our pills, sweetie?" A 2009 study in the American Journal of Alzheimer's Disease and Other Dementias coded videotaped care in nursing homes. When staff used elderspeak, residents with dementia resisted care about 55% of the time, compared with 26% when staff used normal adult speech.

The study was in nursing homes, but the point carries over. Being talked to like a child feels bad, and people respond to it.

How do I stay part of my own doctor's appointments?

Say how you want the visit to go in the first minute, and agree on roles with the person who comes with you before you walk in.

At the start of the appointment:

• "Please talk to me directly. My wife is here to help me remember, and she'll add things if I miss them."
• "I'd like to answer first, then my son can fill in."

Before the appointment, with whoever comes with you:

• Decide their role. Taking notes, adding details you forget, asking the questions you wrote down. Not answering for you.
• Agree a signal for when you want them to step in, and one for when you want them to step back.
• Write your questions down and hold the list yourself.

If you have something to say that you would rather not say in front of your family, or that they would rather not say in front of you, ask for a few minutes alone with the doctor. That is an ordinary request.

What about restaurants, shops and family gatherings?

Answer the question yourself, even when it was not asked of you. Most people adjust immediately.

When the waiter asks your daughter what you would like, you can simply answer: "I'll have the salmon." When a relative asks your husband how you are doing, you can say: "I'm doing all right, thanks. Ask me." Said warmly, it corrects the habit without making a scene.

It also helps to tell the people close to you ahead of time: "If someone asks you a question about me, turn it back to me."

What if I cannot keep up with the conversation?

Ask for what helps: one person at a time, slower, fewer questions at once. You can still be in it.

• "One at a time, please."
• "Can you say that again more slowly?"
• "Give me a minute to find the word."
• "Can you write that down for me?"

Asking for these is not admitting defeat. It is how you stay in the conversation rather than being moved to the edge of it.