At The Center: The Poetry Of Dementia

If you know someone diagnosed with Alzheimer’s Disease, you've probably heard what Kelly calls the accidental poetry of dementia. Some people, like Mr. N, have word-finding trouble and make odd substitutions. Those with impaired judgment, like Mrs. T, lack an inner editor who knows what is appropriate to say aloud. Unusual linguistic patterns, which describes poetry as well as the speech of people with dementia, reveals how we rely on words to express what cannot always be explained by language.

Transcript

Hello,

And welcome to this talk on the topic of what I consider to be the poetry of dementia.

To provide some context,

I want to start by telling you what first made me curious about the brain,

Long before I learned anything about dementia.

In late 2006,

I found myself dialing 911 for my friend,

Jay.

I was asleep at his house after a long night of celebration with friends.

Sometime around 3 a.

M.

,

I woke up to a prolonged moaning noise that sounded barely human.

When I turned on the light and found Jay,

His body was stiff and his eyes were rolled back.

One hand was in a fist over his chest.

I thought he was having a heart attack.

A few minutes later when the ambulance arrived,

The seizure had stopped,

But he had begun to move about the room like an agitated animal.

I was terrified.

He was belligerent with the paramedics who asked him questions that he could not answer.

Then he had another seizure,

Bigger than the first,

And they had to apply restraints to prevent him from hurting himself.

Moments later,

I followed the flashing lights of the ambulance to the hospital a few miles away and paced very nervously in the waiting area of the emergency room.

When I was finally allowed to see him,

He was strapped down onto a movable bed.

This is what he said when he saw me.

You gotta get me out of this butter dish.

It really did look like a butter dish.

I don't remember if I laughed or not,

But it was a huge relief in that moment to know that at least his sense of humor was intact.

In a giant butter dish in the ER.

The days that followed were a blur of medical tests and more seizures.

Parts of Jay's personality were intact,

But others were unrecognizable.

His speech is what most fascinated me.

He used familiar gestures,

But his words were a mess of disorganized syllables.

He thought he was communicating normally,

But no one knew what he was saying.

Finally,

An MRI revealed a barely-there brain tumor.

The idea that brain damage could cause language problems had never occurred to me before.

There is so much we take for granted about language,

Isn't there?

How easily it is learned when we're young.

The way we can usually understand each other when we share a common code.

But it has a biological basis.

When Jay was released from the hospital,

I decided I wanted to understand more about that.

Almost 15 years later,

I'm still learning.

Language can be affected in many ways by the progressive damage of pathology in the brain.

Alzheimer's disease is believed to begin in the hippocampus and interferes with recall and the making of new memories.

For people with that diagnosis,

Words can be hard to find during everyday conversation,

And it eventually becomes difficult to remember the names of even the nearest and dearest people in their lives.

But there are many causes of dementia,

Depending on which parts of the brain are being influenced by the disease process,

And not all of them are distinguished by memory impairment.

With Frontotemporal dementia,

Also known as FTD,

For example,

There can be failures in planning,

Judgment,

Or initiating activities.

The frontal lobes are the newest structures of the brain from an evolutionary perspective,

Associated with complex planning and executive functions.

The profiles of individuals with Alzheimer's disease and frontotemporal dementia can be markedly different.

A common symptom of FTD is disinhibition,

Which can show up as socially inappropriate behavior in language.

I recall one of the clients at the center,

Mrs.

T,

A retired school teacher who was whip smart when we played trivia bingo.

She could participate in two different games happening at the same time at two different tables in the room.

That's how sharp her memory was for fat.

Her dementia revealed itself in disinhibited behavior,

And at the center,

She delighted in flirtation.

Sometimes,

After exercising our bodies with stretches,

When we were all seated in a big circle,

We would play word games to also exercise our minds.

One way to do that was to use a yellow foam ball with flat sides,

Each side displayed a single letter of the alphabet.

We took turns rolling the ball into the middle of the circle,

Where one letter would rise to the top.

The idea was to call out all the words we could think of that started with that particular letter.

For flirtatious Mrs.

T,

I vividly recall her favorite word that started with the letter K.

Kinky.

She yelled it,

And then laughed,

And repeated it in lower tones,

Almost provocatively,

Long after the rest of the group had moved on to other letters.

Intriguingly,

Bilingual and multilingual people can forget the languages they learned later in life and return to their mother tongue.

This made for a beautiful musicality among my multi-ethnic group of clients.

A 90-year-old woman who had emigrated to the U.

S.

From Italy in her mid-40s abandoned the English she had used for almost 50 years in favor of a feisty Neapolitan dialect of Italian.

Another woman,

Mrs.

K,

Had moved back to the U.

S.

From India to live with her daughter after the death of her husband.

Her husband's career had taken them all over the world,

And her command of English was good when we first met.

Three years later,

She was speaking more and more Hindi,

Although her daughter told me that it was not perfectly logical things that she said because of her impaired cognition.

Here I should point out that a return to one's mother tongue is not necessarily a sign of dementia,

And that at older ages,

Many people will have clearer memories of the things they experienced earliest in life.

If you've known someone diagnosed with Alzheimer's disease or dementia of another cause,

You might have heard some pretty imaginative phrases.

This could be a coping strategy when the right word is elusive,

When it's good enough to make do with some substitute.

Other times,

Someone might perseverate on the same word.

It can be a mistake to assume that the repeated word is especially meaningful.

One lady I knew repeated the phrase,

Ice cream,

All day long.

Another man talked about numbers as if they were objects.

In later stages of disease,

Caregivers report not understanding much of what their loved ones say,

And I have had the same experience in the daycare setting.

Sometimes unexpected language is unexpectedly amusing.

Often,

When someone in the center sneezed,

I would offer an instinctive,

Bless you.

Whenever Mrs.

B heard me say bless you,

She launched into a mashed up holiday song that began,

God bless you,

Merry gentlemen,

Humming the rest of the tune,

No matter how far away we were from the Christmas season.

On an overcast day earlier this year,

The light in the room dimmed dramatically when the sun became obscured behind dark clouds.

I was sitting next to Mr.

N,

A gentle giant of a man whose favorite activity was looking out the window,

Up into the foothills where he had spent his career as a land surveyor.

What happened to the sun?

I asked him,

Wondering what he was thinking in that moment.

He replied matter of factly,

It's behind the bear mask.

The sun wears a bear mask?

For some reason,

It sounded like poetry,

And I started to think of Mr.

N as a poet.

Another time when I spontaneously laughed at something he said,

He shrugged and said,

All these little nothingnesses keep coming back.

Poetry is not necessarily the most accessible form of language if one is after facts,

But it is capable of describing the indescribable.

The idea here is that unusual language,

Which can describe poetry as well as the speech of people living with dementia,

Doesn't have to interfere with communication.

It only asks for an adjusted acceptance of the power of words to express just one thing.

The fact is,

Even healthy people misunderstand each other,

Regularly.

Have you noticed?

There's something called the conduit metaphor that most of us believe whether we realize it or not.

We tend to think of words as little packages into which we place meaning.

When we speak or write to someone else,

We are giving them our little packages of meaning,

Fully expecting that we'll be understood.

The problem is that we all have slightly different definitions of words based on our unique sets of experiences.

When someone fails to get the meaning we think we've handed them,

It can be a frustrating experience,

Especially when what we've said seems simple.

If we can pause for a moment and realize that everyone processes language according to their experiences and memories,

It can create a kinder,

More forgiving space in which to try to understand one another.

That's for healthy people and those living with disease.

Besides the sometimes poetic qualities of the unusual language that emerges in the presence of brain damage,

Poetry and song can also be used therapeutically to reach memories that had seemed inaccessible.

This is especially true in the case of rhythmic songs and poems that are learned earliest in life.

Books like Musicophilia by the late Oliver Sacks and documentaries like Alive Inside beautifully document this phenomenon.

And there is a long tradition of music therapy in so-called memory care settings.

If you're interested in this topic and would like to learn more about poetry in the context of dementia,

I invite you to read about my friend Gary Glasner's amazing work at the Alzheimer's Poetry Project.

I thank you for listening today,

Especially if you have never before thought about the language of dementia.

It's important to remember that brain damage is not always visible and we don't know who among us might be affected by impaired cognition.

Checking on older neighbors and family members and being proactive if you notice unusual or dangerous behavior is more important than ever while we endure these months of distanced interactions.

There are many ways we can watch out for each other with small gestures of care,

Connection,

And curiosity.

In the words of Paramahansa Yogananda,

Seek to do brave and lovely things that are left undone by the majority of people.

Give gifts of love and peace to those whom others pass by.

Namaste.

Reviews

I love the verse you close your meditations with….supports loving our neighbor as ourselves♥️
My best friend of 35 years was diagnosed with PPA a couple of years ago. It’s heartbreaking to have “conversations” with her. Thank you for sharing your expertise🙏🏻

Gorgeous emotional story telling, moving from personal experience to the consciousness of competence

Point my husband has dementia and this ring true with him. Sometimes it is so clear and easy to understand and if there’s times it’s just a jumbled words. Taking it a day at a time. Thank you so much.

Great combination of insight and compassion. Thank you💚

Thank you for the beautiful explanation. It struck home and was immensely helpful in helping my understand my mother. Namaste

Compassionate informative talk. Beautifully stated. Thank you.

Every now and then I make a timely discovery on Insight Timer, over and above the regular source of guidance it always provides .Your talks on cognitive impairment falls right here. Thank you. I am presently the caregiver of a very close family member and you have provided me with great insight into the condition, plus help with equipping myself for the future. Thank you for the compassion and understanding you bring.

Thank you so much for your beautiful talk so full of wisdom. Yesterday my husband was diagnosed with vascular dementia and it broke my heart. I knew something in that regard was happening but to be confirmed was heartbreaking. I looked into Insight Timer for the word dementia and found your talk. I write poetry often and your reflection helps me opening my heart with compassion to understand my husband better in this process of cognitive decline. I send you blessings and peace. Namaste.

Thank for speaking on this. My career within social work and therapy specializes within gerontology and Neurocognition. Awareness builds support

Truly an eye opening and intriguing talk! Being blessed with a gift of communicating with life that responds in odd ways,sounds, expressions, etc. I was totally in sync with your expression about different forms communication might take and being open to them.
Would love to have all the book and authors you mentioned to read! Thank you for this heart opened meditation! Namaste! 🙏🙏🙏🙏🌈🌕🌟

Such a kind and beautiful way to encourage connection with loved ones with dementia. I’m eager to share with my coworkers in our memory support community. Namaste and peace 🙏🥰✌️

Excellent information, thank you for sharing it.

So very beautiful and poignant 🙏

Thank you for this Kelly! What a beautiful talk. I’m am a new student of speech language pathology (don’t love the word pathology) and this was so educational for me!!!! Thank you for seeing the beauty in the disorderly.

Really changed my point of view. And our perspective is a key factor of our outlook on life. Thank you kindly for posting this “talk” Kelly.

What a precious session on the poetry of dementia. I am an accredited counsellor and I love words. This was informative, tender and full of human kindness, I will listen to more, blessings in your work Kelly

You have so clearly provided a lens that softens my understanding of dementia. From the scary monster- type label I learned in my childhood , I’m opening to a curious exploration. Thank you for all the talks you have shared here on IT. 🙏

Really interesting. Thank you.

Beautiful, and so fitting as my mum is in late stage of Alzheimer's. Sometimes I dont understand her as it's mix up with mumbled speech of different words, not really making sense. Love the way you helped me understand her a little more. Thank you 🙇‍♀️🙇‍♀️🙇‍♀️

That was really beautifully said. Thank you for the stories 🙏🏽