Communicating With Someone Who Has Dementia

Communicating with someone who has dementia

A woman with dementia asks where her mother is. Her mother died in 1987.

There are three possible answers and only one of them is any good.

The first is the truth: your mother died nearly forty years ago. This is honest and it will be forgotten within minutes, which means she will experience the shock of fresh bereavement repeatedly, sometimes several times in an afternoon.

The second is a lie: she’s fine, she’ll be here later. This works in the moment, it costs nothing, and it leaves the person waiting for somebody who is not coming.

The third is to answer the question underneath the question: “Tell me about your mum.”

That third option is the whole of this guide in one example. The woman is not asking for a biographical update. Somewhere in that question is a feeling — safety, missing someone, wanting to be looked after — and the feeling is what is actually available to be responded to.

The principle: respond to the emotion, not the content

The approach most commonly called validation means acknowledging the person’s emotional reality rather than correcting their factual one.

It is not lying, and the distinction matters because families worry about this a great deal. Lying is “your mother is fine, she’ll visit tomorrow.” Validation is “you’re missing your mum — she sounds like she was lovely. What was she like?” The first creates a false expectation. The second responds to something true.

The older approach — reality orientation, where you repeatedly correct the person back to the present — has largely been abandoned for people with established dementia, because it does not work and because it causes distress. You cannot correct somebody into a memory they cannot form. All you can do is make them feel wrong, repeatedly.

Where orientation does still help: gentle environmental cues. A large clock showing day and date. A whiteboard with today’s plan. A note saying where you have gone and when you will be back. Those provide the information without the correction.

What changes, and roughly when

Communication difficulty in dementia is not one thing, and what helps differs by stage and by cause.

Early

Word-finding difficulty. Losing the thread of longer conversations. Difficulty following a group. Reduced ability to handle abstraction, implication and sarcasm. Repetition. Trouble with written material and forms.

What helps here: slow down slightly, one topic at a time, quiet environments, written summaries after important conversations, and patience with pauses. Also — and people get this wrong — continue treating the person as a full participant in conversations about them. Early dementia is where insight is most likely to be intact, and being talked over at this stage is both insulting and formative.

Middle

Shorter sentences needed. Difficulty with sequencing and multi-step instructions. Pronoun confusion — he, she, it losing their referents. Difficulty naming people. Reliance on familiar phrases. Increasing difficulty with written material. Comprehension of tone and facial expression remains strong, and often becomes the main channel.

That last point is the important one. As words become less reliable, tone, face and touch become more reliable. A person who cannot follow a sentence can read impatience in a voice instantly, and will respond to the impatience rather than the content.

Late

Few or no words. Communication through sound, facial expression, body language, reaching, and resistance. Responsiveness to touch, music and familiar voices persists well beyond language.

What helps: presence rather than conversation. Sitting with someone. Music. Hand massage. Reading aloud. Describing what you are doing as you do it. And continuing to speak to the person rather than about them, which matters even where you cannot be sure how much is understood — partly because you often cannot be sure, and partly because of what it does to everybody else in the room.

Where language goes first

Primary progressive aphasia inverts the usual pattern: language degenerates while memory and reasoning hold up for a period. These people often retain full awareness of their communication failure, which is its own distinct distress, and they benefit enormously from early speech pathology — not to restore language, but to build communication strategies and alternatives while they can still learn them. Waiting until speech has gone wastes the window. See frontotemporal dementia.

Speech pathology sits at $193.99 per hour under the 2026–27 NDIS price limits, with the non-face-to-face item covering the work of building a communication profile and training the people around the person — which is where most of the gain actually comes from.

What to do

The practical list.

Get their attention first. Say their name, make eye contact, come into their field of vision from the front. Starting to talk from behind or across a room produces nothing.

One idea per sentence, and wait between them.

Use nouns, not pronouns. “Your daughter Sarah is coming” rather than “she’s coming.” Pronouns require you to hold a referent, which is exactly what is failing.

Ask yes/no questions when you need a specific answer, open questions when you want the person to express something. “Would you like tea?” works where “what would you like to drink?” produces nothing.

Offer two options, not five. And show them physically where you can.

Wait. Longer than feels natural. Processing and word retrieval both take longer, and most conversations with people with dementia are closed down by the other person filling the gap.

Watch your tone and your face, because they are being read more accurately than your words.

Use gesture, demonstration and pointing. Showing beats telling.

Write key things down and hand them over. A note with the time, the plan, where you have gone.

Break tasks into single steps, delivered one at a time rather than as a sequence.

Follow their lead on topic. If they want to talk about 1974, go to 1974.

Acknowledge the feeling before anything else. “That sounds frightening.” “You’re worried about getting home.”

Apologise and move on when something goes wrong, rather than explaining who was right.

Use humour, which survives a long time and does a lot of work.

What not to do

Do not say “don’t you remember?” It asks the person to do the one thing they cannot, and it lands as an accusation. Every single time.

Do not quiz. “Who am I? What’s my name? What did you have for lunch?” Testing somebody conversationally makes every interaction an examination they are failing. If they do not recognise you, say who you are warmly and carry on.

Do not argue about facts. Nobody has ever won one of these and the cost is the relationship.

Do not correct in front of other people.

Never discuss someone over their head as though they had left the room. Extremely common, deeply resented, and reported by people with dementia as the thing that upsets them most.

Do not use a different voice. Slower and clearer is helpful; loud, singsong or baby talk is not, and it is noticed.

Do not finish their sentences unless invited.

Do not rush, which produces more distress than any other single thing.

Do not give instructions from another room.

Do not ask “do you understand?” — the answer is yes regardless. Ask the person to show you, or check by watching what happens next.

Do not take the hurtful things personally. Easier said, and worth saying anyway. Accusations, insults and rejection are produced by illness and fear rather than by a changed opinion of you.

The hard conversations

Lying, and where the line is

Families agonise about this, so here is a workable position.

Do not volunteer false information, and do not make promises that cannot be kept — “we’re going home tomorrow” when you are not.

Do not insist on distressing facts that will be forgotten and re-experienced. Repeatedly delivering a bereavement is not honesty; it is cruelty with good manners.

Redirect to the feeling, which is almost always possible and is almost always better than either lying or correcting.

Where a direct question demands an answer and the truth will cause lasting distress with no benefit, most clinicians and most families land on a gentle, non-specific response rather than either a lie or a confrontation. “She’s not here right now” is true.

The test worth applying: does this information change anything the person can act on? If yes, tell them. If no, and it will hurt, consider whether it needs saying.

Telling the person their diagnosis

The person has a right to know, and this is not negotiable in principle. In practice it needs doing well: with time, with somebody present, with written information to take away, with a plan for what happens next, and with the opportunity to ask questions over several conversations rather than one.

For younger onset dementia, where insight is frequently preserved, this is particularly important and particularly badly done. See younger onset dementia.

Telling other people

The person’s own preference should drive this wherever they can express one. Being outed to a social circle by a well-meaning relative is a real injury, and people with dementia name it.

Making decisions, and who speaks

A point that belongs in a communication guide because it is so often handled as though it were a capacity question when it is actually a communication one.

Difficulty communicating a decision is not the same as being unable to make one. Capacity is presumed, it is decision-specific, and it can be supported — more time, simpler options presented one at a time, pictures, written choices, a familiar person present, asking at the person’s best time of day.

A person may be entirely unable to manage their finances and entirely able to decide what they want to eat, who they want to visit, and where they want to live. Removing all decisions because some are beyond the person is both common and wrong.

The practical habit worth building: keep asking, and keep offering real choices, long past the point where it seems to be working. People retain preferences, and the ability to express a preference, much longer than the ability to explain one.

Writing it down for everybody else

One document worth making, because it travels with the person and does more than any amount of explaining in the moment.

A one-page communication profile, in plain language, covering:

How I communicate best — speech, gesture, writing, pictures; what I understand and what I do not.

How to talk to me — short sentences, one idea at a time, wait, use my name, use nouns not pronouns, approach from the front, do not rush me.

What I like to be called. Not “love” or “darling” unless that is genuinely welcome.

Words and phrases I use that you might not understand, and what they mean. Every family has these and every new worker learns them by trial and error unless somebody writes them down.

How you’ll know I’ve understood — and how you’ll know I have not, which is the more useful half. Many people with dementia say yes to be agreeable, so the profile should say so.

How you’ll know I’m in pain, frightened or had enough — behaviours rather than words. More harm is averted by this part than by any other.

Things that upset me, and things that reliably help.

Five things about my life — my job, my children’s names, where I grew up, the music I like, the team I follow. This single section transforms what a stranger can do with somebody in the first ten minutes.

Who knows me best, and their number.

Keep it in the front of the support plan, give a copy to every new worker on their first shift, send it to hospital with the person, and update it as things change. For somebody with limited speech who ends up in an emergency department at 11pm with staff who have never met them, this piece of paper is the difference between being understood and not.

When speech is mostly gone

Late in the condition, and early in primary progressive aphasia, spoken language stops being the main channel. Communication does not stop with it.

Watch the face and the body, because that is where the information now is. Brow, jaw, shoulders, hands, whether they lean in or turn away. Most people with advanced dementia remain expressive; the expression has simply moved.

Use touch, where it is welcome. A hand on a forearm, help with a cardigan, hair brushed. For somebody with very little language left, touch is frequently the clearest message available and the one that arrives intact.

Use music. It survives when almost nothing else does, and the response to a song somebody knew at twenty is often startling — words sung that cannot be spoken, a face that changes completely. This is not sentimentality; it is one of the better-documented findings in the field.

Offer choices physically rather than verbally. Hold up two jumpers instead of asking which jumper. The question is impossible and the pointing is not.

Keep talking anyway. Comprehension outlasts expression, frequently by a long way, and the assumption that somebody who cannot answer cannot understand is both common and wrong. Narrate what you are doing. Say who you are. Say what is happening next.

Watch for pain, since it is the thing most often missed once words are gone. Guarding a limb, wincing on transfer, refusing food, a change in breathing, new agitation at a particular time of day. If somebody who cannot report pain becomes distressed, pain is the first hypothesis, not the last.

And read the refusals as communication. A clamped mouth, a turned head, a hand pushed away — these are answers. Treating them as answers rather than obstacles changes the whole interaction.