The Tragedy (Discourse) Of Dementia

We’re going to get into the difficult material now.

I want to begin with a quote from a 2016 article in the Journal of Neurology:

“What remains is not another person, but the ruins of the former person. The loss of dignity, the knowledge that the lasting memory of their loved ones will be of a decomposed version of oneself, causes them to suffer now, and that is considered unbearable. The tragedy of the disease is its destructive nature.”

These blunt thoughts are common. What is unusual is hearing a private thought spoken in a public forum.

The authors go on to discuss euthanasia for people with dementia. They question the point of allowing nature to take its course: Why continue to slowly disintegrate? Why not bring the merciless process to an end?

Dementia is a group of diseases. A person can have more than one kind of dementia at the same time. They are progressive and terminal, but they are different, and their courses are different.

Yet our collective response to the idea of dementia is one of deep existential dread.

I have heard people with dementia described as less than human or as the living dead. I hear people say, “That’s not my mother anymore. My mother is dead.” Or, as in this article, that what remains is “decomposed ruins.”

As a community and a nation, the primary way we know how to talk about dementia is through what one group of researchers called the “tragedy discourse.”

When we imagine the experience of another person, we tend to place ourselves inside it. When we think about dementia, we imagine being trapped inside a failing mind.

That is not necessarily what dementia feels like to the person living with it.

All of us experience a continuum of ability throughout our lives.

When we talk about dementia, we usually focus on memory. What people often notice most, however, is a loss of executive function.

When I think about executive function, I consider how my own abilities have changed throughout my life. Toddlers have terrible executive function. Teenagers are forgetful and have poor impulse control. Babies cannot balance.

Throughout our lives, and particularly during times of stress, we experience different levels of executive function.

We tend to forget that the changes associated with dementia are coming for all of us in some form, whether we like it or not. They come with aging and illness. For every one of us, dying eventually means losing physical function and executive function.

When we view people with dementia as less than human, we are ultimately viewing all of us as less than human.

I want to invite you to see a whole life rather than a broken one. A life with its own particular arc.

The quotations you see are real comments from people living with dementia. Some describe revealing their diagnosis as a form of coming out, with all the fear that phrase entails.

When you disclose a dementia diagnosis, you can create a black hole into which your independence disappears. Your power is taken away, along with your ability to make choices and live as an autonomous adult. This often happens immediately.

The self is mysterious. We do not truly understand where it comes from or what creates it.

One thing we do know is that the self persists.

As much as I have changed throughout my life, my sense of “me-ness” has remained. Yet that is one of the first things we take away from people with dementia. We assume they no longer possess a sense of self. We decide that their “me” is gone.

We deny them that persistence, and we should not.

People with dementia often feel very much like the same people they have always been. They may recognize that their memory is impaired or that certain pieces are missing. They may even be able to tell you exactly what they have lost.

But they have not necessarily lost their sense of themselves.

I have reviewed much of the research on living with dementia. It did not take long because there is not much of it.

Researchers have been remarkably uninterested in the lived experience of dementia. They focus on cures, palliation, and systems of care, but they rarely ask what it is actually like to live with these illnesses.

Research on well-being and happiness among people with dementia is especially scarce.

When researchers do not study the lived experience, we are left with a limited vocabulary. We rely largely on our own assumptions about dementia and our interpretations of what we see.

A limited view produces limited language, and limited language further narrows our view.

Approaching other people this way violates a fundamental scientific principle and an essential principle of caregiving: Do not assume you know everything. Do not assume you know where the story is going. Do not assume you know how it will end.

Be willing to be surprised.

More than anything, I want to invite you to notice the possibility of happiness.

In one survey of people with moderate dementia, meaning they had lost significant function and needed help with some activities of daily living, more than two-thirds said they had a good or very good quality of life.

They attributed that quality of life to friendship and attachment, the very things that often disappear into the black hole created by a diagnosis.

I work with people who have dementia many days each week, and I see nuances that are rarely discussed.

I see intimacy.

I see moments of startling clarity when no one expects them.

I have clients who laugh and tell jokes every day. Whenever I see Laura, she always has a pun ready.

I see people who begin singing as soon as they hear music. They stand up and sing. People dance. Some people dance all day.

Because people with dementia are physically and socially vulnerable, I also see a lack of defensiveness.

Many of us spend our lives on a wheel of ambition, achievement, status, and social roles. At a certain point in dementia, a person may step off that wheel. They stop defending their status and become transparent within relationships.

From the outside, you may see only loss.

“My mother can’t tie her shoes anymore.”

“My father has forgotten the names of people in our family.”

Loss, loss, loss.

But there are riches to be seen as well.

I see brave people trying to figure out the day, just as I am. I see the vulnerability that comes from having to trust other people.

I have a client named Jenny. She is small and somewhat fragile, but like many people with dementia, she is busy. She walks throughout the day and always seems to be going somewhere.

Sometimes she carries a small houseplant with her.

I do not know what the plant means to her, but I can look at her face and see that she is calm and composed. Sometimes she holds it like a baby. She is protective and careful.

I do not know exactly what it means, but I see love in her face.

Communicating with people who have dementia can resemble communicating with someone who speaks another language. It is not bad. It is simply different, and it requires us to pay attention in a particular way.

When someone does not speak your language, you study their facial expressions and posture. You listen to their tone of voice and look for other clues.

You learn to pay attention differently.

My friend Joe has moderate dementia that is beginning to progress. He was once a software engineer and musician. He still loves his guitar, but he has forgotten the word “coat.”

The other day, when we were preparing to take a walk, he could show me that he needed his coat even though he could not find the word. I helped him locate it, and we went outside.

We walk much more slowly than we used to. That is partly because his balance is changing, but it is mostly because Joe pays close attention to everything he sees.

He studies each thing we pass and attends to the moment as though it has never happened before.

And you know what? It never has.

He may be onto something.

How many hours and how much money have you spent trying to learn how to live in the present moment?

Joe already knows how.

Here is the caveat: Dementia encompasses a devastating, difficult, and challenging group of diseases.

Part of the devastation comes from a healthcare system that is woefully inadequate at providing the care people with long-term illnesses need. That failure adds to the suffering of families.

The tragedy discourse adds to their suffering as well.

I want to push against the blanket assumption that dementia is always a disaster for the person living with it, that the outcomes are always terrible, and that tragedy is the only framework available to us.

One way people with dementia suffer is through our pity.

They suffer because we stop paying attention to them. We withdraw them from society and take away purposeful work.

One general study of happiness found that two of the things people need most are intimate relationships and meaningful work.

We often take both away immediately after a dementia diagnosis.

People with dementia suffer from our pity because pity creates distance. They suffer from our lack of attention and from the moment we stop listening.

We say they have lost their dignity.

But dignity means worth. It means worthiness.

We do not truly mean that a person with dementia, an aging person, someone living with illness, or someone who is dying has lost their worth.

I want you to notice your assumptions.

We often carry a dissonance between our beliefs and our actions. We believe all people are equal. We believe our clients and patients have worth and autonomy.

But we do not always behave that way.

We patronize them. We stop paying attention. We pity them.

None of us has any choice but to meet the circumstances of our lives. That includes people with dementia. They must face what is happening to them.

I want to live a life of grace. I struggle every day to do that.

To me, grace means more than simply meeting your circumstances. It means learning to dance with them and fully engaging with your life.

I see people with dementia doing this every day.

I want you to see it, too.

Sometimes, what I see is people literally dancing.

Thank you.