Honouring their voice: Communication and dignity through dementia

Yuki's mother Keiko was two years into her Alzheimer's diagnosis. Moderate stage. Could no longer manage complex tasks, often confused about time and place, and needed help with daily living.

One day, Yuki was helping her mother dress. Keiko was struggling with buttons. She couldn't remember the sequence, getting frustrated. Yuki, trying to help, reached over and started buttoning for her.

Keiko pushed her hands away. "I can do it myself."

But she couldn't. Not really. She tried for several minutes, getting more agitated.

Yuki felt the familiar tension: intervene and risk upsetting her mother, or stand by and watch her struggle with something she could fix in seconds?

Then Yuki's teenage daughter Elena, who'd been watching quietly, said something that changed everything.

"Grandma, those buttons are tricky. Would you like to do them together? You hold this side, I'll hold that side?"

Keiko's face softened. "Yes. Together."

They buttoned the cardigan together. Took longer. Wasn't efficient. But Keiko was engaged, helping, participating. Afterwards, she looked pleased. Satisfied. Not infantilised.

Three years later, Keiko is in late-stage dementia. She doesn't speak much anymore. Doesn't always recognise Yuki by name. But when Yuki sits beside her, holds her hand, and sings old Japanese songs Keiko sang to her as a child. Keiko smiles. Squeezes her hand. That connection is still there.

"The person my mother was is still in there," Yuki said. "She's just accessing and expressing it differently now. My job is to meet her where she is, not demand she come back to where she was."

 

People living with dementia retain fundamental aspects of themselves throughout the disease, but how they access and express these aspects changes.

What typically remains (longer than families expect):

Emotional capacity and connection
People with dementia continue to feel emotions deeply - joy, fear, love, frustration, and contentment. Even in late stages, emotional responsiveness often remains when other cognitive functions have declined.

Sense of self and identity
Core personality traits, values, and preferences often persist. The person who loved gardening still responds positively to being outside. The person who valued family still lights up around loved ones.

Desire for purpose and contribution
Research consistently shows that people with dementia want to feel useful, to contribute, to have purpose - not to be "busy work" recipients but meaningful participants.

Long-term memories
While recent memory declines, often childhood and young adult memories remain vivid much longer. These memories are part of their identity.

Response to tone, emotion, music, touch
Even when language deteriorates, people with dementia remain highly attuned to tone of voice, facial expressions, body language, music, and physical affection.

What changes:

Ability to express thoughts in words
 Word-finding difficulties, losing track of conversations, mixing up meanings - communication becomes harder, but the desire to communicate remains.

Short-term memory and time orientation
Difficulty forming new memories, confusion about what happened when, and living more in the present moment.

Processing speed and complex thinking
Taking longer to understand, difficulty with multi-step tasks, and confusion with abstract concepts.

Initiation and sequencing
Difficulty starting tasks independently, getting stuck on steps, needing prompts and support.

Awareness of deficits (anosognosia)
Often, people with dementia lose insight into their own cognitive decline - they genuinely don't realise they're struggling. This isn't denial; it's neurological.

 

Communication isn't just about exchanging information. It's about maintaining relationships, honouring personhood, and preserving dignity.

Core principles:

1. Meet them where they are, not where you wish they were

Don't correct. Don't argue. Don't test their memory. If your father thinks he's 40 years old and needs to go to work, arguing "Dad, you're 80 and retired" creates distress without benefit.

Instead: "Tell me about your work" or "What did you do at work today?" Enter their reality. Find the emotional truth underneath (maybe he's feeling purposeless, wants to contribute).

2. Validate feelings, even when facts are confused

If your mother is upset because she thinks her mother (who died 30 years ago) is coming for dinner and she hasn't cooked - don't say "Mum, your mother died in 1995."

Instead: "You love your mother very much" or "You always made her feel welcome" or "Tell me about your mother."

The feeling (love for her mother, anxiety about hosting) is real even if the situation isn't current.

3. Simplify language without infantilising

Use short sentences. One idea at a time. Simple words. But adult content and respectful tone.

Not: "It's time for din-dins! Let's get you to the table, okay sweetie?"

Instead: "Dinner's ready, Mum. Shall we sit down?"

4. Give time and space to process

People with dementia need longer to process questions and formulate responses. Count to 10 in your head before repeating. Resist the urge to rush or finish their sentences.

5. Use non-verbal communication generously

Gentle touch, eye contact at their level, warm facial expressions, calm tone—these convey care and respect when words become difficult.

Practical communication techniques:

Offer choices between two clear options (not open-ended)
Not: "What would you like for lunch?"
Instead: "Would you like soup or a sandwich?"

Use closed questions when needed
Not: "What did you do this morning?"
Instead: "Did you go for a walk this morning?"

Give one instruction at a time
Not: "Take off your shoes, wash your hands, and come to the table."
Instead: "Let's take off your shoes." [wait] "Now let's wash hands." [wait] "Time to sit down."

Use visual cues and demonstration
Show while telling. Hand them the toothbrush while saying "time to brush teeth." Point to the chair while saying "let's sit here."

Pay attention to body language and environment
If they're agitated, check: Are they in pain? Hungry? Need the toilet? Too hot or cold? Overstimulated by noise/light? 

 

People with dementia who maintain small areas of autonomy experience less agitation, better mood, and a preserved sense of identity.

The goal: Shift from "doing for" to "doing with."

Strategies:

Daily living activities

Dressing:
Not: Dressing them like a child
Instead: Lay out clothes in the order they go on. "Would you like the blue shirt or the grey one?" Let them participate in whatever steps they can manage, even if it's just pulling their arm through after you've positioned the sleeve.

Meals:
Not: Feeding them when they can still self-feed
Instead: Finger foods they can manage. Adaptive utensils. Placing food where they can see and reach it. Demonstrating how to start. Let them do as much as possible.

Bathing:
Not: Bathing them like an infant
Instead: "I'll wash your back, you wash your front?" Hand them the washcloth for parts they can manage. Talk through what you're doing before and during.

 

Around the house

Don't give them "busy work" give them real jobs adapted to their capability.

If they always loved cooking:
Ask them to stir, tear lettuce, set table. Real contributions, not fake tasks.

If they were always handy:
Ask them to sort tools, wind up hoses, fold towels. Meaningful help.

If they loved gardening:
Sit together and deadhead flowers, plant bulbs, water plants. Real gardening, adapted.

Frame as helping you, not occupying them:
"Could you help me with this?" not "Here's something to keep you busy."

 

Decision-making and autonomy

Include them in daily decisions, even small ones:

• What to wear (between two options)

• What to eat (between two options)

• Where to sit, what to watch, whether to go outside

• What music to listen to

Ask their opinion, even if executing falls to you:
 "What do you think about this?" "Which do you prefer?" "Does this look right to you?"

Leveraging long-term memory and expertise

Ask for advice in areas of lifelong knowledge:

If they were a teacher:
"I'm having trouble explaining something to [grandchild]. How would you explain it?"

If they loved cooking:
"How did you make that stew you always made? What was the secret?"

If they worked in business:
 "I'm trying to figure out [problem]. You always had good judgment about these things. What do you think?"

 

Connection through activities

Music:
People with dementia often retain musical memory long after other memories fade. Songs from their youth, hymns from their faith, lullabies they sang to children - these can unlock emotion, memory, and connection.

Looking at photo albums:
Not to test memory ("Who is this?"), but to invite stories.
"Tell me about this photo" or "This looks like fun" or simply sitting together looking.

Physical affection:
Holding hands, gentle touch, hugs (if welcome). These communicate care when words fail.

Being in nature:
Outside time, watching birds, feeling the sun, being in gardens - these experiences don't require language or memory to be meaningful.

 

As dementia progresses into moderate and late stages, verbal communication often declines significantly. But the connection remains possible.

What works in moderate-late stage:

Presence over conversation
Sitting together in comfortable silence. Not needing to fill every moment with words. Your calm, loving presence communicates care.

Sensory engagement
Hand massage with nice-smelling lotion. Playing familiar music. Showing objects with interesting textures. Gentle movement/swaying. These create a connection through the senses when words don't work.

Following their lead
If they're agitated, don't force calm. Acknowledge the feeling: "You seem worried. I'm here with you." If they're humming, hum with them. If they're looking out the window, sit and look together.

Validation and reassurance
"You're safe. I'm here. I love you." These phrases, repeated calmly, convey security even when other words are confusing.

Interpreting behaviour as communication
Pulling at clothes might mean too hot. Pacing might mean the need to move or go to the toilet. Calling out might mean lonely or in pain. 

 

These approaches are well-intentioned but undermine dignity and increase distress:

Don't quiz or test memory
"Do you remember me?" "What's my name?" "What year is it?"
These questions highlight deficits, cause distress, and don't help.

Don't correct or argue with their reality
If they insist it's 1975 and they need to pick up the kids from school, arguing creates conflict without benefit. Enter their timeline, find the emotional need underneath.

Don't speak about them as if they're not there
 Even in the late stage, people often understand more than they can express. Don't stand over them discussing their condition with doctors/nurses/family without including them or at least acknowledging their presence.

Don't use elderspeak or baby talk
 High-pitched voice, simplified vocabulary like "din-dins," terms of endearment uninvited ("sweetie," "dear"), overly loud speech - these are patronising and undignified.

Don't rush or push when they're resistant
 If they don't want to shower today, maybe hygiene wipes and fresh clothes are enough for today. Pick battles. Forcing compliance damages trust and dignity.

Don't take aggression personally
Aggressive behaviour in dementia is almost always communication of distress (pain, fear, confusion, overstimulation). It's not a personal attack, it's a symptom of brain changes + unmet need.

 

If your parent is in residential aged care, you can still support their voice and dignity through:

Educating staff about who your parent is:
Create a life story book: photos, career, hobbies, important people, preferences, personality traits. Staff who know the person (not just the patient) provide more dignified care.

Advocating for person-centred care:
Small things matter: preferred name, clothing choices, meal preferences, activity involvement, music they love. Make sure staff know these preferences.

Your visiting presence:
Regular visits maintain a connection. Bring music, photos, favourite foods (if allowed). Do activities together: looking at albums, listening to music, walking in gardens.

Monitoring for dignity and respect:
Are staff speaking respectfully? Including your parent in conversations about them? Offering choices? Respecting preferences when possible? If not, advocate.

 

Six years into caring for her mother with dementia, Yuki has this perspective.

 

Dementia Australia:

• 1800 100 500 (24/7 helpline)

• Free communication workshops for families

• Life story book templates

• Person-centred care resources

• Local support groups

Dementia Training Australia:

• Free online modules on communication strategies

• Understanding behaviour as communication

• Supporting autonomy and dignity

Alzheimer's Australia publications:

• "Communication and Dementia" guide

• "Supporting a Person with Dementia" series

• "Behaviour Changes in Dementia" resources

Local dementia-specific services:

• Day respite programs (social engagement, activities, dignity-focused care)

• In-home respite with dementia-trained carers

• Music therapy programs

• Art therapy programs

 

People with dementia remain whole people with emotional capacity, desire for purpose, and sense of self far longer than most families expect. Your job isn't to force them back to who they were. It's to honour who they still are and adapt how you relate so they can continue to express themselves, contribute, and be seen.

That's what dignity means. Being treated as a whole person, not just a collection of deficits.