Understanding care options for a family member living with dementia

When someone you love is living with dementia, families are often told what is changing clinically.

Memory.

Judgment.

Communication.

Behaviour.

Ability to complete daily activities.

What families are not always prepared for is what those changes can feel like at home.

Your mother may insist she has already eaten when she has not.

Your father may become angry when you try to help him shower.

Someone who spent decades caring for everyone else may suddenly become suspicious of the very people trying to protect them.

And sometimes the hardest part is that the person you love is still right there.

They still laugh.

They still have preferences.

They may remember an old song while forgetting what happened ten minutes ago.

They may have good days that make you question whether you are overreacting — followed by a difficult night that leaves the entire family exhausted.

Dementia care is rarely simple.

Behaviour is communication

When a person living with dementia becomes agitated, refuses care, repeatedly asks the same question, wanders, calls out or behaves in a way that seems completely unlike them, the behaviour itself is only part of the story.

Something may be driving it.

Are they in pain?

Hungry?

Constipated?

Frightened?

Overstimulated?

Tired?

Unable to understand what is being asked of them?

Have they experienced an abrupt change that could require medical assessment?

Sometimes the environment or the way care is being approached needs to change.

Instead of beginning with, “How do we stop this behaviour?” it can be more helpful to ask:

“What might this person be trying to communicate?”

That change in perspective matters.

Dementia does not make someone less deserving of dignity

A diagnosis should never become permission to stop listening to the person.

Someone may require cueing, supervision or complete assistance and still deserve privacy.

They may struggle to find words and still deserve time to communicate.

They may refuse a shower because they are frightened or confused, rather than simply being “difficult.”

They may no longer be able to tell you exactly what is wrong and still communicate through facial expressions, movement, tone and behaviour.

Good dementia care adapts to the person instead of continually demanding that the person adapt to us.

There is no single correct place to receive dementia care

Some people living with dementia remain at home for many years.

Others eventually require a retirement residence, assisted living environment, memory care setting or long-term care.

The right option depends on much more than the diagnosis.

Families should consider the person's current abilities, safety risks, behaviours, medical needs, mobility, overnight needs, available supervision, financial circumstances, home environment and the capacity of their caregivers.

A person may be physically independent but require significant supervision because of impaired judgment.

Another person may have relatively preserved memory but substantial physical care needs.

That is why two people with the same diagnosis can require completely different care plans.

Caregiver exhaustion is part of the care picture

Families can love someone deeply and still become exhausted.

Those things can exist at the same time.

Dementia care can mean disrupted sleep, repeated questions, appointments, medication management, personal care, financial responsibilities and constant vigilance.

For some families, it also means watching a relationship change.

A husband becomes a caregiver to his wife.

A daughter begins making decisions for the mother who once made every decision for her.

A family member may experience grief while their loved one is still physically present.

These experiences deserve to be acknowledged.

When we assess whether a care plan is working, we cannot look only at whether the person with dementia is physically safe.

We also need to ask whether the people providing the care can realistically continue providing it.

When something feels wrong, keep asking questions

Families know their loved ones.

You know what is normal for your mother.

You know how your husband usually behaves.

You know when your father seems different.

That knowledge matters.

A sudden or significant change in confusion or behaviour should not automatically be dismissed as “just the dementia.” There can be other causes of acute changes that require assessment.

Be specific about what you are seeing.

Instead of simply saying, “Mom is confused,” explain what has changed from her usual baseline and when the change began.

Your observations can provide important information to the healthcare team.

The person comes before the diagnosis

At Valentine Care Collective, dementia support begins with a simple principle:

Know the person.

Who were they before the diagnosis?

What comforts them?

What frightens them?

What routines have followed them for decades?

What music do they love?

What foods feel familiar?

What name do they prefer?

Who are the people they trust?

What parts of their independence can still be protected?

Because dementia may change how someone experiences the world, but it does not erase their history, culture, relationships or humanity.

Families deserve guidance that sees all of those things.

And the person living with dementia deserves care that sees them — not simply their diagnosis.