Having the conversation with a parent who has dementia — timing and capacity

This article is for informational purposes only and does not constitute medical, legal, or financial advice. Always consult with qualified professionals regarding your specific situation.

Your mother has been diagnosed with dementia. She still understands most of what you say, still knows who you are. But you know this will change. You know that the window for having meaningful conversations about her wishes, about what matters to her, about what she'd want if she got very sick—this window has a closing date. And you don't know when that date is.

The dementia conversation is different from the regular end-of-life conversation. With someone who's well, you can wait. With someone who has dementia, you can't. Every conversation might be the last one where they can truly understand what you're asking and give you a coherent answer. Every conversation might be the last chance to record their wishes, to capture who they are before the disease takes more.

This creates a kind of urgency that's different from the fear of "someday" death. This is about "the time we have now is slipping." And it requires both honesty about the disease and gentleness about the conversation.

Before Dementia Advances

The ideal time to have this conversation is early, when your parent has just been diagnosed or in the early stages. They still have capacity. They understand what's happening to them. They're not yet lost in confusion. They can think clearly about complex questions.

This is when you have the conversation that you would have anyway. "Mom, you've been diagnosed with dementia. We know things will change. I want to understand what's important to you now, while you can tell me clearly." This is direct. It names the thing that's happening. It uses the window.

Some people resist having this conversation early because it feels premature. Your parent is still themselves. They're still functioning. Why talk about the end when the beginning has just happened? But dementia doesn't follow a predictable course. Your mother might have six good years left, or two. You don't know. Waiting is the gamble, and often it's a gamble you lose.

If your parent will engage, you ask the questions. What do they want if they get very sick? What do they fear most? What do they hope for? What do they want you to remember about them? What would they want their money spent on? What matters most? Write down the answers. Record them if possible. Create a record of who they are and what they want while they can still tell you.

You can also ask about their fears. What scares them most about the dementia? What do they hope won't happen? Some people will say, "I'm terrified of losing myself" or "I don't want to be a burden" or "I don't want to end up in a facility." These statements tell you what they value. They tell you what to watch for as they decline.

Gauging Capacity

At any point in the conversation, you need to assess whether your parent actually understands what you're asking. This is not about memory. Early dementia doesn't destroy understanding; it destroys memory. Your mother might not remember having a conversation five minutes later, but in the moment, she might understand it perfectly.

What matters is: do they understand the question? Can they think about it? Can they give an answer that makes sense? If you ask, "If you had a stroke and couldn't speak, what would matter most to you?" do they engage with the question, or do they blank, or change the subject, or give an answer that doesn't make sense?

If they can engage, keep asking. If they can't, stop. You're not testing them or trying to trap them. You're just looking for the place where they can still think about complex things.

Some days are better than others. Some people with dementia have clearer periods. Your mother might be sharp in the morning and confused by evening. If you're going to have an important conversation, have it when she's clearest.

It's also okay if the conversation happens in pieces. You don't have to ask everything at once. You can ask one question and come back another day with another question. That might actually work better. It's less overwhelming, and it means each answer gets full attention.

Simple Language and Patience

When you do have the conversation, simplify your language. You don't need to talk about "palliative care" or "end-of-life wishes." You can say, "What matters most to you?" or "What don't you want to happen?" or "What would you want if you were very sick?"

Use simple sentences. Give them time to think. Don't rush them. If your mother takes a long time to answer, that's okay. Dementia slows thinking. Give her the space.

If she gets confused, gently redirect. "That's about something else. I'm asking about what you'd want if you got very sick." Don't argue. Don't try to convince her. Just gently bring her back to the question.

If she becomes upset or agitated, stop. You're not going to have the conversation if she's distressed. Come back another time, or ask again a different way, or accept that this particular conversation might not happen.

Repetition is okay. People with dementia forget conversations. So you might have the same conversation multiple times. This is frustrating, but it also gives you multiple chances to capture the same answer. If your mother tells you three times that she doesn't want to be in a nursing home, that's consistent. That's something you can rely on.

Recording and Documenting

If you can, record the conversation. Not video necessarily—audio is fine. The recording is a gift. When your mother can no longer speak or understand, you can listen to her voice. You can hear her saying what matters. It's powerful. It's a way to keep her present even when dementia has taken her.

You can also record video. A simple phone recording of your mother saying, "If I get sick and can't make decisions, this is what I want..." This is both legally useful and emotionally valuable.

Write down what she says. Use her exact words if possible. "I don't want to be in a home." "I want to stay in my house." "I want to know when I'm sick." "I want my kids to make decisions." These quotes are powerful. They're evidence of her wishes. They're also a way to hold onto her voice.

Create an advance directive or healthcare proxy form that documents her wishes. Work with a lawyer if possible, though you can also use forms from your state. Some states have "Dementia Directives" specifically designed for people with dementia. These documents can include things like: what kind of medical treatment she wants, whether she wants to be in a facility, what she wants after she dies, what her values are.

The document doesn't have to be perfect. It just has to exist. It just has to say, "This is what my mother wants, in her words, while she still understands."

As Dementia Progresses

As your mother's dementia worsens, the conversations might become harder. She might not understand what you're asking. She might be confused or frightened. She might not even recognize you. At this point, the conversation about wishes becomes less important than the conversation about comfort and presence.

But the early conversations, the ones you had when she could still think clearly, become more important. They become your guide. They're how you know what she would want now. They're how you make decisions when she can't.

And there's a different kind of conversation that becomes possible as dementia advances. You might not talk about future medical decisions. But you can talk about the present. "Mom, I love you." "I'm here with you." "You're safe." These words might not matter to the person with advanced dementia, or they might matter enormously. You don't know. But they matter to you. They're how you stay connected to the person she was and the person she is now.

Making Peace With What You Know

If you have a parent with dementia and you missed the early window, if you didn't have these conversations when you could, don't spend energy on guilt. The situation is what it is. What you can do now is: talk to their doctor about their values. Look at advance directives. Make decisions based on what you know about the person they were and the person they are now.

If you did have the conversation early, if you did capture her wishes, hold onto those documents. Use them. Trust them. When you're making decisions about her care, go back to what she said. "She wanted to stay home. Let's keep her home." "She was afraid of becoming a burden. Let's make sure she knows she's not." "She valued family. Let's make sure family is present."

Your parent gave you this gift when they could still give it. The gift of knowing. The gift of being able to honor their wishes when they can no longer speak them. That's precious. That's enough.

How To Help Your Elders is an informational resource for families working through aging and elder care. We are not medical professionals, attorneys, or financial advisors. The information provided here is for educational purposes and should not replace professional consultation. Every family's situation is unique, and rules, costs, and availability vary by location and circumstance.