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Dementia denial: The secretive obstacle to intervention

September 11, 2012
by Pamela Tabar, Associate Editor
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“Oh, silly me; I’d lose my own head if it weren’t attached!”

“Of course I remember that—I was just joking.”

“Yes, I feel great, thanks.”

Anyone who has a family member or friend diagnosed with early-stage dementia or Alzheimer’s has heard these phrases, and many similar ones. One of the trickiest aspects of early-stage cognition impairment isn’t necessarily the disease itself—it’s the denial.

For caregivers, patient-centric denial becomes a frustrating obstacle to productive memory-care regimens and possible treatment with medications that could earn precious time, if administered early on. For families and friends, it can be absolutely devastating.

Denial is, first and foremost, a coping mechanism—rooted deep in the human psyche. It taps into our most primal survival instincts, attempting to reassure our own feelings of normalcy and belonging in the communitywide collective we call life.

Many people who live with early-stage dementia can still drive to the grocery store, have logical conversations, recite multiple phone numbers and addresses, and function rather well in daily life. To them, things seem pretty much OK, so they find it hard to see what all the fuss is about.

They naturally wonder why others are harping on them, as if they aren’t capable of remembering a simple task! They misunderstand their family’s reactions, they doubt their own diagnoses and they reject their physician’s proposed care plans. (It’s not surprising that, during the earliest phases of a diagnosis, many patients may insist on a change of physician at least once, despite all test results.)

Then, at some point, the cognitive cracks begin to show—to them. They realize they’ve somehow forgotten a crucial responsibility, overnight. They realize that they’ve eaten breakfast twice today, failing to register the first time. Tomorrow, they might realize they can recall minute details from 1983, but can’t seem to remember the current route to their hometown library. Then, a close family member suddenly reacts very strangely to something they’ve said, leaving them with the eerie, foreboding feeling that something is obviously amiss, but they’re not sure what it is.

Then the real, bone-level fear sets in.

It’s well documented that many people with early-stage dementia will do almost anything to hide their symptoms for as long as possible. They might disguise their miscues under light-hearted comedy, or deliberate projections of “silly me” absentmindedness, or outright lies. Anything to retain a grasp on what it felt like to be normal, just for a bit longer. Anything to staunch the unfortunately traditional paranoia-thought: Don’t let them know, or they’ll put me away.

But secrets like this are extremely stressful to keep. So, their own private frustrations often cascade through families, friends and all levels of relationships—partly because cognition impairment can dramatically change the way people interpret the reactions of others, and partly because stress is a sharable, reverberating and deep-seated thing.

“Denial masks emotions of grief, loss, fear and uncertainty,” writes Angela Lunde, an education outreach coordinator at the Mayo Clinic. “Anger will only make them dig their heels in deeper. And when we resist, blame or reject, we stay trapped in our own anger.”  

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pamela tabar

Editor-in-Chief

pamela tabar

@Pamela_Tabar

www.ltlmagazine.com

Pamela Tabar is editor-in-chief of Long-Term Living. She has worked as a writer and...