A Dementia Diagnosis Matters 

Years ago, someone I love took a 23andMe test. Along with ancestry information, her health report showed that she carried an APOE ε4 genetic variant associated with an increased risk for late-onset Alzheimer’s disease.

It did not mean she would develop Alzheimer’s. The result showed increased risk, not certainty.

She was thoughtful about it.

Now she knew.

Watching her process that information caused me to ask a question I had never seriously considered before.

Would I want to know?

My first reaction was …. Hmmm, I’m not so sure!

If there was little I could do about it, why would I voluntarily add another layer of worry and fear to an already full and demanding life?

Would knowing help me make wiser choices? Perhaps.

But would every forgotten name suddenly validate – now here it is? Would I take fewer chances and become overly cautious, or would I be less cautious to cram in all I could while I can? Would I begin to feel like a ticking time bomb when nothing had actually happened?

None of us knows every health challenge that may lie in our future. Why would I choose advance warning about this one?

For me, this was never a simple yes or no question.

Yet once I understood more about the choices, inclusion, support and participation that earlier knowledge can make possible, my perspective began to shift.

World Alzheimer’s Day takes place on September 21, the focal point of World Alzheimer’s Month. This year’s international theme brought my old question back to me.

“The Earlier You Know, The More You Can Do: A Dementia Diagnosis Matters.”

What Can You Actually Do?

The answer is broader than I once understood.

For years, medications have been available that may help with some Alzheimer’s symptoms. Very recently, newer disease-modifying treatments have been approved in Canada for selected people in the earliest stages of Alzheimer’s disease. These treatments can slow progression for some people by targeting an underlying feature of the disease.

That is promising progress. They are not cures, they do not reverse abilities already lost, and they are not suitable for everyone. There can also be side effects and serious risks, so possible benefits and risks need to be considered with your doctor.

Treatment is one reason an earlier diagnosis may matter.

But it is not the only one.

Could Knowing Change How I Live?

Yes. And that can cut both ways.

As mentioned, I might become too cautious and allow a possibility to cast a shadow over years that could otherwise be lived fully. (Fear)

Or I might use the information to make choices while those choices are still mine. (Opportunity)

Where would I want to live? Who would I trust to help with healthcare or financial decisions? What would I want my family to understand? What experiences would I stop postponing?

These are questions worth considering long before Alzheimer’s, or any serious health challenge for that matter.  Thinking ahead about who we trust, what matters to us and how we would want decisions made if we could no longer speak for ourselves is part of planning well at any age.

Alzheimer’s gives those questions added urgency because earlier knowledge may provide more time to answer them for ourselves. The Alzheimer Society of Canada identifies earlier diagnosis as an opportunity to participate in healthcare decisions, set priorities, make financial and legal plans and make wishes known to family and friends.

That is agency.

Then there is dignity.

Would a diagnosis cause other people to begin treating me differently? Would ordinary mistakes suddenly be interpreted as evidence that I was incapable? Would conversations about my future begin happening around me rather than with me?

A diagnosis should never become permission to erase the person standing in front of us.

Knowing can carry an emotional burden.

I still respect the hesitation I felt years ago. This is a profoundly personal question.

But knowing can also create opportunity.

Time to ask questions. Time to plan. Time to say what matters. Time to participate.

Perhaps that is what this year’s theme is inviting us to consider. Not simply what medicine may be able to do, but what a person may still be able to do for themselves.

Speak. Choose. Plan. Participate.

Protect dignity. Preserve agency.

Would I want the opportunity to have a voice in what happens next?

To that, my answer is yes.

Warmly,
Rhonda Latreille, MBA, CPCA®
Founder & CEO, Age-Friendly Business®

p.s. Since 2003, Age-Friendly Business® has trained thousands of professionals and businesses committed to learning how to elevate the quality of the client, customer, and community experience. They are called Certified Professional Consultants on Aging (CPCAs)® and Age-Friendly Businesses®. They have earned the right to ask for your business.

Body

What Knowing Does to Us

Uncertainty can be stressful. Difficult information can be stressful too.

If you are concerned about changes in memory, thinking, mood or behaviour, a medical assessment can help determine what is happening.  Some treatable conditions can cause memory or thinking changes that resemble dementia, including thyroid disease, vitamin deficiencies, sleep disorders and depression, may be treatable.

If the answer is dementia, emotional support matters. So does continuing to include the person in decisions about their own life.

Sometimes the healthiest response to difficult information is not pretending there is nothing to fear.

It is asking what remains within our control.

Spirit

A Thought for Reflection

“When we are no longer able to change a situation, we are challenged to change ourselves.”

Viktor E. Frankl