Alzheimer's Changes So Much, But The Person Is Still There
It begins with something small.
Someone forgets where they put their keys. They ask the same question twice. They struggle to remember a name they have known for years. At first, everybody laughs.
“Yuh getting old!”
Then the forgotten things become harder to dismiss.
A familiar journey becomes confusing. Bills that were always paid on time are forgotten. A person who has cooked the same meal for decades suddenly cannot remember what comes next. Words become harder to find. Dates become muddled. Someone may become suspicious, frightened, withdrawn or unusually irritable.
Eventually, there may be a diagnosis: Alzheimer's disease.
Suddenly, it can feel as though everything has changed. And in many ways, it has… but one thing has not.
The person is still there.
Not hidden somewhere behind the disease. Not already gone. Not reduced to a diagnosis. The person sitting in front of you is still a person, even when the way they experience and interact with the world begins to change.
For World Alzheimer's Day, perhaps one of the most important things we can talk about is not simply what Alzheimer's takes away.
It is what the rest of us must remember to preserve.
Alzheimer's Is More Than Forgetfulness
We often associate Alzheimer's disease with memory loss, but it can affect much more than someone's ability to remember.
Alzheimer's is the most common cause of dementia. Dementia is an umbrella term for a group of symptoms caused by diseases that affect the brain. Depending on the person and how the disease progresses, there can be changes in memory, language, reasoning, orientation, judgement, behaviour and the ability to manage everyday tasks.
Everyone experiences dementia differently. Understanding that matters. Because once someone receives an Alzheimer's diagnosis, it can become very easy for the diagnosis to swallow everything else we know about them.
They become “the Alzheimer's patient”.
But before Alzheimer's, there was a whole human being. And after the diagnosis, there still is.
A Diagnosis Does Not Erase A Lifetime
She may have been the woman everybody called when they needed advice. He may have been the man who could fix anything with a screwdriver, some wire and pure determination.
She may love calypso. He may hate bodi with the passion of a thousand suns.
She may have been a teacher, seamstress, accountant, mother, auntie, neighbour, gardener or business owner. He may still want his tea made exactly the way he has drunk it for forty years.
There are preferences, habits, relationships, beliefs, humour, culture, history and personality that existed long before Alzheimer's entered the story.
Person-centred dementia care is built around precisely this principle: care should respond not simply to someone's diagnosis but to their history, personality, abilities, culture, preferences and individual needs.
Maintaining dignity, relationships, activities and involvement can support wellbeing and help the person remain connected to their sense of identity.
Sometimes caring well for someone begins with remembering who they have always been.
Please Don't Start Treating Them Like A Child
This can happen without anyone intending harm.
Someone begins having difficulty understanding complex instructions, so people simplify their language.
That's reasonable.
But somewhere along the way, simplifying communication can turn into infantilising the person. The voice changes. The tone becomes sing-song. Decisions are made in front of them without including them. People speak about them as though they aren't sitting right there.
“Well, she doesn't understand anyway.”
Maybe she understands more than you realise or maybe she cannot find the words to respond. Maybe processing what you have said takes longer. Maybe she understands your tone even when the sentence itself becomes difficult.
Dementia can affect someone's ability to communicate, but that does not mean we should assume they understand nothing. Guidance for communicating with people living with dementia specifically recommends avoiding “elderspeak” or speaking to the person as though they are a child. It also encourages including the person in conversations, giving them time to respond and remembering that they may understand considerably more than they can express.
An adult with Alzheimer's is still an adult.
Make Communication Easier, Not Smaller
As Alzheimer's progresses, communication may require adaptation.
Speak clearly.
Slow down if necessary.
Use shorter sentences when long explanations become overwhelming.
Give the person time to process what you have said.
Ask one question rather than five.
Reduce background noise when possible.
Sit where they can see you.
If they are struggling to find a word, resist the temptation to immediately finish every sentence for them.
You also want to pay attention to communication that isn't verbal. A facial expression. A gesture. Moving away from something. Reaching towards someone. A change in posture. A smile or a hand squeezing yours.
Communication does not disappear simply because speech becomes difficult. Facial expressions, body language, touch, pictures, music and familiar sounds can all remain ways of connecting.
Sometimes we are so focused on getting the person to communicate in the way we understand that we miss the ways they are already communicating with us.
You Don't Have To Win Every Argument
Imagine being absolutely certain that you need to collect your children from school.
Someone tells you that your children are grown adults.
No. That cannot be right. You know they are children. You know they need you. So you become increasingly distressed while the person in front of you repeatedly insists that what you believe is wrong.
Or perhaps you ask when your mother is coming home.
She died thirty years ago. Someone tells you. You are devastated. A little while later, you forget. You ask again. And you are told again.
For the person answering, it may feel like simply stating a fact.
For the person with dementia, it can sometimes mean experiencing painful news as though it were new.
There is no single response that is appropriate in every situation. Alzheimer's Society guidance on difficult questions and “time-shifting” recommends considering the person's individual circumstances and best interests rather than treating factual correction as the automatic response.
Sometimes the more useful question is not: How do I make them understand that they're wrong?
It is: What are they feeling, and what do they need from me right now?
Maybe “I need to pick up the children” is really expressing responsibility or worry. Maybe “I want to go home” is expressing fear, discomfort or a need for familiarity.
The facts matter. But sometimes the feeling underneath the words tells you more.
Behaviour Is Communication Too
Someone living with Alzheimer's may become agitated, suspicious, frightened, angry or withdrawn.
They may refuse to bathe. They may repeatedly try to leave. They may accuse someone of stealing something they misplaced. They may resist help. Those moments can be extraordinarily difficult for everyone involved.
But before reducing the person to being “difficult”, it can help to ask what the behaviour may be communicating.
Are they frightened?
In pain?
Hungry?
Thirsty?
Overwhelmed by noise?
Unable to recognise the person trying to undress them for a bath?
Confused about where they are?
Frustrated because everyone around them seems to understand something they cannot?
Behaviour that appears irrational from the outside may make much more sense when we try to experience the situation from the person's perspective. Person-centred dementia care encourages precisely that shift.
This does not make every behaviour easy to manage.
It simply reminds us that there is still a human being behind the behaviour, trying to navigate a world that may no longer make sense in the way it once did.
Let Them Do What They Can Still Do
Caring for someone can create an understandable instinct to take over.
It is faster. It may feel safer. And sometimes, it becomes necessary.
But there is a difference between providing support and removing someone's independence before it needs to be removed.
If they can still choose what they want to wear, let them choose.
If they can still help prepare food safely, let them participate.
If they can still fold clothes, water plants, sweep the gallery, sing in church, dance, garden, choose what they want to eat or make a cup of tea, those things matter.
They are not simply activities to keep somebody occupied. They can be pieces of identity. Person-centred approaches encourage people living with dementia to remain involved, maintain skills and continue activities they enjoy for as long as possible.
Support should expand as it is needed. Dignity should not shrink with it.
Stop Talking Around Them
There may eventually be difficult decisions about medical care, finances, driving, living arrangements and safety. Family members will need conversations with doctors, caregivers and one another.
But whenever the person with Alzheimer's can participate, include them.
Ask what they want.
Ask what they do not want.
Listen to their preferences.
Ask what they are afraid might happen as the disease progresses.
Talk about what matters most to them if there comes a time when they can no longer communicate their wishes.
Explain what is happening in a way they can understand.
Do not automatically turn towards the daughter, husband, son or caregiver and begin discussing the person as though they have disappeared.
They haven't.
These conversations can be uncomfortable but having them early gives the person an opportunity to have a voice in their future care. What would they want if they could no longer live safely at home? Who would they trust to make decisions on their behalf? Are there treatments or interventions they would or would not want? What would they want their daily life to look and feel like as their needs change? What brings them comfort? What would they consider an acceptable quality of life? What are they frightened might happen to them when they can no longer speak for themselves?
Don't wait until someone has lost their voice to wonder what they would have said. Even when their ability to make certain decisions changes, their preferences, comfort and dignity still matter.
Connection Does Not Depend Entirely On Memory
This may be one of the hardest things for families to accept.
There may come a time when someone you love no longer remembers something important. Eventually, they may struggle to recognise people who have been part of their life for decades.
That hurts. There is no clever sentence that makes it not hurt.
But recognition is not the only form of connection.
Someone may not be able to tell you your name and still relax when you enter the room.
They may not remember the afternoon you spent together yesterday and still enjoy sitting with you today.
They may struggle to follow a conversation but smile when a familiar song begins.
They may respond to your voice, your touch, your presence or the feeling of safety around you.
Even in advanced dementia, familiar sounds, gentle touch, facial expressions and simply being present can provide reassurance and connection.
We often measure relationships through memory. Do you remember me? But perhaps sometimes another question matters too. Do you feel safe with me?
The Person Is Still Here
Alzheimer's can change a great deal.
It can change memory, language, independence and relationships. Personality and behaviour can change too.
There will be losses, and pretending otherwise does nobody any favours. But we should be careful about describing someone as “gone” while they are still alive because language shapes how we treat people.
If we decide the person is already gone, it becomes easier to speak over them. Ignore their preferences. Stop including them. Talk about them rather than to them. Reduce their entire life to what they can no longer remember.
Good dementia care asks us to do something different. It asks us to look at what remains, as well as, what has changed. To meet the person where they are. To preserve choice where choice is possible. To communicate differently when necessary. To respect the adult they have always been. And to remember that dignity does not depend on memory.
On this World Alzheimer's Day, that is something all of us can carry with us.
A person can forget your name and still deserve to hear theirs spoken with respect. They can lose abilities and still have preferences. They can need help and still deserve autonomy.
Their world may be changing. But the person is still there.
Whisper To Your Heart
If someone you love is living with Alzheimer's, there may be days when you search desperately for the person you remember. Allow yourself to grieve what has changed. But try, too, to see the person who is with you now. They may communicate differently. They may experience time differently. They may need more from you than they once did. But their dignity has not disappeared. Meet them where they are. Love does not always require remembering yesterday. Sometimes it is simply creating safety, connection and tenderness today.
— Nadia Renata | Audacious Evolution
Affirmation
I choose to see the person beyond the diagnosis. I will meet change with patience, preserve dignity wherever I can and remember that a person's worth is never measured by what they are able to remember.
— Nadia Renata | Audacious Evolution
If you’d like to sit with this a little longer, you can find more affirmations like this in my YouTube playlist; a quiet space to return to whenever you need grounding.
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