Dementia Communication as the Disease Progresses

The way you talk to a person with dementia has to change as the disease does. What worked last year may frustrate them this year, and what works in the late stage would insult someone in the early stage. A person can lose words long before they lose feelings, so a good caregiver keeps adjusting. They listen to more than the words, and they keep treating the person as an adult. This guide assumes you know the basics, such as approaching from the front and using short sentences. It covers how those basics change by stage, and what to do when simple answers do not work. When a change in speech is sudden, it may be medical, so report it to the nurse right away.

What You Will Be Able to Do

• Match how you communicate to the person's stage.
• Give instructions that a person with moderate dementia can follow.
• Respond to false beliefs without arguing or making things worse.
• Read needs in a person who no longer has words.
• Avoid the talk that makes people resist care.
• Record what works, so the next caregiver can use it.

How Communication Changes

Everyone's disease is different, and people move at their own speed. Use the stage as a starting point, and let the person show you what they can do today. Abilities can also change by the hour, so a good morning may be followed by a hard evening.

Early Stage: Stay Out of the Way

A person in the early stage can usually still speak for themselves. The most common mistake is treating them as if they cannot.

• Speak to them, not about them. If a family member is there, include the person in the conversation.
• Do not finish their sentences unless they ask you to.
• Ask, "What's still easy, and what would you like help with?"
• Let them use notes, calendars and phone reminders. These are good coping tools.
• Humor is fine if they start it.

Do not assume they cannot understand because you know the diagnosis.

Middle Stage: One Step at a Time

This is the longest stage, and it is where most communication skills get used. The person can usually still talk, but they cannot keep up with a fast or complicated sentence.

1. Get ready. Turn off the TV, and move to a quiet spot. Check that they have their glasses and hearing aids.
2. Greet them each time. Approach from the front, and make eye contact before you speak. Introduce yourself by name and role every visit, even if you saw them yesterday. "Hi, Mrs. Jones. I'm Ana, your aide."
3. Say one thing. Use short, simple sentences with one idea.
4. Wait. Allow 30 to 60 seconds. This feels long, so count silently. If you jump in, you restart their thinking.
5. Repeat using the same words. A new wording makes them start over.
6. Show as you tell. Hold up the toothbrush. Point to the chair. Brush your own hair to show the motion.
7. Give fewer choices. Use yes or no questions, or two choices.

Worked example: helping Mr. Ali to the bathroom.

Instead of: "Mr. Ali, it's time to go to the bathroom before lunch, so let's get up and walk down the hall, okay?"

Try this, waiting after each line:

• "Mr. Ali." (Wait for eye contact.)
• "Let's stand up." (Pat the arm of the chair. Wait.)
• "This way." (Offer your arm and point.)
• "Here's the toilet." (Point. Wait.)

The first version has five ideas. The second has one idea at a time, and each is joined to something he can see.

Instead Of, Try

Asking "Do you remember?" is a test the person will fail, and they know it. Questions like "What did you do today?" have the same problem.

When Beliefs and Facts Do Not Match

A person may say their late husband is coming to dinner, or that they must get to work. Correcting them does not help. They cannot hold on to the fact, so they only keep the pain. A person who hears "Your husband died" may grieve as if it were new, again and again.

Use validation, which means responding to the feeling behind the words, not to the facts. Then redirect them to something they can enjoy.

1. Listen for the feeling. Is it worry, sadness or being needed?
2. Name the feeling. "You miss him."
3. Invite them to talk. "Tell me about him. How did you meet?"
4. Move gently to something else. "He sounds wonderful. Let's get some tea."

Example. Mrs. Ortiz asks over and over, "When is my daughter coming?" If you know, answer each time as if it is the first time, with the same calm words. Often the question is really about worry, so answer that too: "Your daughter loves you. She's coming on Sunday. You're safe here with me."

What about making up a story? Many teams avoid a planned lie, but they do not force painful facts either. The goal is to comfort the person, not to win or to deceive them for your convenience. Do not make promises they may hold on to, such as "He'll be here in an hour." Your care plan or employer may have guidance, so ask the nurse when you are not sure.

Talk That Makes Things Worse

Elderspeak is baby talk aimed at older adults: "honey," "sweetie," "good girl," "are we ready for our bath?" and a singsong voice. It sounds kind, but research links it to more resistance to care. People with dementia can pick up on being talked down to, even when they cannot follow the words. Use their preferred name and a normal adult voice.

Also avoid:

• Talking over the person to a coworker, or as if they are not there.
• Sounding rushed. Your tone often carries more than your words.
• Standing over a seated person. Sit or crouch if you can do it safely.
• Sudden touch from the side or from behind.
• Long talks in a noisy dining room.

Late Stage: Communicating Without Words

In the late stage, a person may say little or nothing, but they can still feel comfort, fear and pain. Hearing is thought to stay late, so keep talking to them. Tell them who you are and what you are about to do, every time.

• Touch. A hand held, or a gentle hand on the shoulder, can say more than words. Learn who likes it and who does not.
• Sound. Familiar music often reaches people when speech does not, because musical memory tends to last. A favorite hymn can settle a whole morning.
• Smell and taste. A familiar lotion or a favorite flavor, if the diet allows it.
• Your presence. Sitting nearby counts as care.

Reading the Signs

The person is still sending messages. Learn what each one means for them, and pass it on.

Other Things That Get in the Way

• Hearing and vision loss. Check that hearing aids work, and that glasses are clean and on the right person.
• Language. Some people drift back to the language they learned first. A few words in that language, or a family member's help, can open things up. Ask the family for phrases.
• Timing. Save hard conversations and complex care for the person's best time of day.
• Your own mood. People with dementia read tension fast. If you are upset, take a breath before you go in.

Writing Down What Works

Good communication gets lost at shift change unless someone writes it down. Report what works to the nurse so that it can be added to the care plan. Many teams use a short "about me" card.

Example.

• Prefers "Mr. Walker," never "Bill."
• Was a bus driver and likes to talk about routes.
• Wears a hearing aid in the left ear. Speak on that side.
• "I need to go check the bus" means he needs the toilet.
• Calms down with Johnny Cash songs.

A note like this helps a new aide succeed with him on their first day.

When to Call the Nurse

Slow loss of words is part of the disease. Report these right away:

• Sudden loss of speech, slurred speech, or words that make no sense.
• A sudden drop in alertness or attention.
• A new droop in the face, or weakness on one side. Call 911 for possible stroke.
• A new hallucination or fear.
• Any statement about wanting to die or about being hurt by someone. Do not promise to keep it secret.

Also report slow changes, such as a person who no longer uses the toilet phrase they used last month. Slow changes help the team plan ahead.

Common Mistakes

Check Your Understanding

1. A woman in the early stage is at a doctor's visit with you. The doctor asks you how she's been sleeping. What do you do?

Turn toward her and include her: "Mrs. Burns, would you like to tell the doctor how you've been sleeping?" She can usually speak for herself. Add details only if she wants you to.

2. You ask a man with moderate dementia to put on his shoes. He stares at you. After 10 seconds, what do you do?

Wait longer. He may need 30 to 60 seconds. Then repeat the same words, and hold out the shoe. Do not reword it or add steps.

3. A resident says she has to leave to pick up her kids from school. She's getting upset. What is the best way to respond?

Do not correct her. Respond to the feeling: "You love your kids. Tell me about them." Then invite her to do something else with you, such as having a snack or folding towels.

4. A man with late-stage dementia has stopped speaking, and he pulls at his brief and moves his legs a lot. What might he be telling you?

He may be wet, need the toilet, or be uncomfortable. Check and change him gently, tell him what you are doing, and report it if the restlessness continues.

5. A client who talked normally this morning now speaks in words that make no sense. What do you do?

This is a sudden change, not the slow loss that comes with dementia. Check for stroke signs, call 911 if you see any, and call the nurse right away.

Key Takeaways

• Let the person's stage guide you, and adjust from day to day.
• In the middle stage, give one idea at a time, wait 30 to 60 seconds and show as you tell.
• Introduce yourself every time, and never test memory.
• Respond to the feeling, not the facts, and redirect.
• In the late stage, use tone, touch and music, and read the face and body.
• Sudden changes in speech or alertness are medical. Call the nurse.