When Someone Else Speaks for You, Whose Voice Do They Use?

When Someone Else Speaks for You, Whose Voice Do They Use?

Memory may change. The right to have a voice should not.

There is a moment, often subtle and almost imperceptible, when the people surrounding someone experiencing cognitive changes begin to speak for them.

It may begin with kindness.

A daughter answers a question before her mother has a chance. A spouse makes a decision because it seems easier. A well-meaning professional directs a conversation toward the caregiver rather than the person sitting right in front of them.

Nobody necessarily intends to take anything away.

But something important may be disappearing.

The person's own voice.

The Difference Between Knowing Someone and Speaking for Them

We often hear the reassuring words, “I know what they would want.”

Sometimes that's true. Years of shared experiences, intimate conversations, and mutual understanding can provide invaluable guidance.

But knowing someone's history is not necessarily the same as knowing what they want today.

People change their minds. Priorities shift. Circumstances alter what matters.

And a diagnosis involving memory or cognition does not automatically eliminate someone's ability to express preferences, make choices, or participate meaningfully in decisions about their own life.

Yet the temptation to substitute another person's judgment can be powerful.

Particularly when decisions are difficult.

Particularly when someone is frightened.

And particularly when everybody believes they are acting out of love.

What Research Tells Us About Surrogate Decisions

Research published in medical journals, including JAMA, has examined how accurately family members and other surrogate decision-makers can predict a patient's preferences.

The findings challenge an assumption many of us make: that someone who loves us will necessarily know what we would choose.

Surrogate decision-making can be imperfect, even in close relationships.

That doesn't mean families are uncaring or incapable. It means that affection, familiarity, and good intentions cannot always substitute for a person's own expressed wishes.

This is one reason advance care planning matters.

But there is another, equally important consideration.

What about the decisions that happen long before a medical crisis?

What to do today.

Where to go.

Whom to see.

What to wear.

Whether to accept an invitation.

How to spend an afternoon.

These ordinary choices form the fabric of identity and independence. Gradually removing them can diminish a person's sense of agency long before more significant decisions become necessary.

Support Is Not the Same as Substitution

At Memory in Motion, or MiM, we believe this distinction deserves far more attention.

Supporting someone through early-stage Alzheimer's or other cognitive changes should not automatically mean taking over.

Sometimes support means allowing extra time for an answer.

Sometimes it means offering a reminder rather than issuing an instruction.

Sometimes it means presenting choices more clearly.

And sometimes it simply means asking the person directly.

“What would you like to do?”

Not asking their spouse.

Not asking their adult child.

Not assuming the answer.

Asking them.

That small act of respect can carry enormous meaning.

Of course, cognitive conditions vary, abilities may change, and there are situations where another person must act to protect someone's safety or make decisions they can no longer make independently.

But needing assistance with some decisions does not mean a person should be excluded from all decisions.

Capacity is not always an all-or-nothing proposition. Participation and support can be adapted to the individual and to the decision being made.

Why MiM Uses the Words Traveler and Supporter

Language matters.

At MiM, we use the term Traveler for the individual experiencing cognitive changes.

And Supporter for the person helping them navigate daily life.

We chose those words deliberately.

A Traveler is still moving through life, with experiences to enjoy, relationships to maintain, preferences to express, and choices to make.

A Supporter is there to help make that journey easier—not to take ownership of it.

Neither person is defined solely by a diagnosis or by a caregiving role.

Both are people with lives, identities, and needs of their own.

This thinking is central to the MiM Traveler and MiM Connect applications currently in development.

Our ambition is to explore how thoughtful technology can make everyday life more manageable while respecting the Traveler's independence, identity, and involvement.

Technology should support human connection, not replace it.

It should help someone participate more fully in life, not quietly remove them from the conversation.

The Questions We Should Be Asking
Perhaps we need to change the questions we ask when someone begins experiencing memory difficulties.

Instead of immediately asking, “Who will make decisions for them?” we might begin with:

How can we help them continue making the decisions they are able to make?
How can we better understand and record their preferences?
What tools or reminders might make everyday choices easier?
How can family members provide support without unintentionally taking control?
How do we preserve dignity when greater assistance becomes necessary?
These are not merely medical questions.

They are human questions.

They touch families, friendships, communities, technology, public policy, and the way we understand aging itself.

The Person Is Still Here

One of the greatest dangers of a cognitive diagnosis is that other people may begin responding to the diagnosis rather than to the person.

We start talking about limitations instead of possibilities.

We focus on what may eventually be lost instead of recognizing what remains.

And sometimes, without realizing it, we begin making someone's world smaller in the name of keeping them safe.

Safety matters. So does dignity.

The challenge is to honor both.

At MiM, we believe the conversation about Alzheimer's and cognitive change must include not only the voices of researchers, clinicians, policymakers, and family members, but also the people experiencing those changes themselves.

Not merely as subjects of care.

As participants.

As decision-makers wherever possible.

As individuals whose lives continue to have meaning, purpose, pleasure, and possibility.

Because the question should never simply be who will speak for someone when they can no longer speak for themselves.

It should also be:

Are we still listening while they can?

Memory may change. The person is still here.