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The dementia patient isn’t giving you a hard time.

The dementia patient is having a hard time.

–Unknown

The neurologist’s office is an oasis for Mom and me. It’s an oasis in the middle of the desert of dementia’s stigma.

The office itself is small-ish and largely unmemorable. It’s located in a cookie-cutter strip mall type plaza, cased in neutral colors inside and out, with a TV perpetually airing Doctor Phil episodes. It’s complete with vases of fake flowers and magazine racks filled with months of issues of Home & Garden, Outside, and People.

Mom L-O-V-E-S Doctor Phil. Slightly embarrassing to admit but true.  I enjoy Outside magazine and the occasional perusal of People (less embarrassing than being Doctor Phil’s number 1 fan). But as sweet as those perks are, the absence of dementia’s stigma inside of its four walls is what truly makes the neurologist’s office the oasis that it is. The people in the office just seem to get it.

How?

When they see Mom, they see a person–not a clinical collection of nameless or faceless symptoms. They treat her with patience, kindness, and compassion. The staff makes and holds eye contact, and waits for Mom to sort out her answers and make her way through the conversation. She’s given time to make her points and share her thoughts. They talk with Mom instead of talking at her.

And because they’re treating a person, they know when to nudge, push, lift-up and listen. Our visits to the oasis are collaborative and constructive. Whether we’ve gotten good news, bad news, or no news at all, we leave the office feeling supported and comforted. Every time.

It’s subtle and if you don’t live with a form of dementia or care for someone who does, you likely wouldn’t notice. But it’s there and it’s splendid because it’s stress reducing (like a good caregiver).  It lifts Mom’s spirits and replenishes my caregiver resolve. A very welcome reminder that just because Mom is living with dementia doesn’t mean we should settle for its stigma.

The desert of dementia’s stigma

But the rest of the system doesn’t get it. The health care system is full of brilliant and caring people who are determined to positively impact the world. I believe that. But I also believe that the majority of those same people don’t get dementia–in a practical sense.  Outside of the neurologist’s office, our experience tells us that the healthcare system doesn’t understand what it’s like to live with dementia or care for someone who is. At all. 

Logic and math tell us that the odds are that lots of the people we interact with across the healthcare system know and love someone battling dementia in their own personal life. But we can’t tell from our day-to-day experience with them. That experience shows us that they seem to forget when they’re at work. Or they compartmentalize to retain their clinical focus and churn and burn to the next patient.

I’m puzzled by how this happens. The system is full of good people who must have a baseline understanding for a) the prevalence of dementias and b) common thread symptoms, presentations, and needs of dementia patients.

Yet, dementia’s stigma persists in the healthcare system.  Because instead of providing (even temporary) relief from the emotional toll the disease takes on the patient and those who care for them–more often than not, they add to it.  

Is he always like this?

Like when I take Mom to her primary care office and we spend twenty minutes being talked at and lectured to. It feels more like we’re an obstacle between them and the next patient instead of being cared for. There seems to be little attention paid to tone or body language in these interactions.

It’s the opposite of collaborative and certainly not constructive. I don’t believe it’s intentional (how could it be?) but the result is Mom walks out of those appointments feeling less-than. And I do too. Dementia’s stigma is palpable there, in a place that should be a refuge from it.

It was a similar feeling  recently when Lindsay unexpectedly wound up in the ER with Steve. As they were going through triage, the sadly familiar question came.

“Is he always like this?”

Slightly stung and more than slightly annoyed, Lindsay explained (again) that her dad has Lewy Body Dementia–to give the triage nurse some important context that would help make the interaction easier (and more efficient) for everyone.  Yet the question came again a few minutes later. Then again. And again.

In an ER setting, with loads of patients and lots happening fast, I can see asking the question once. I suppose. It would’ve been unnecessary if the question-asker listened to the people in front of them and reconciling what they were hearing with what they were seeing, but I give them a pass for asking the question one time. But four? Nope.

Out of all that happened at the ER that day, that (repeated) question–how it made Lindsay feel, and worse, how it must have made Steve feel–is what we remember. We remember it now and we’ll surely remember it the next time we’re there. Just one more thing to think about.

So why doesn’t the rest of the healthcare system get it like the neurologist’s office does?  

Perspective

We’re not talking about a rare family of diseases here. These numbers from the Alzheimer’s Association put things in perspective.

1 in 3 seniors in the U.S. dies with Alzheimer’s or another dementia

It kills more than Breast Cancer and Prostate Cancer combined

5.7 million Americans are living with Alzheimer’s

By 2050, that number will rise to close to 14 million

16.1 million Americans provide unpaid care for people living with Alzheimer’s or other dementias

That’s a lot of people walking in the desert of dementia’s stigma. Today. And in the next thirty years, it will be nearly three times as many people. If as a society we’re going to end the stigma, it needs to start with the healthcare system.

I don’t accept that neurologists get it only because it’s their speciality. That’s not what makes their office an oasis. Yes, their knowledge helps but it’s their understanding combined with their fundamental human kindness and compassion that does the work of stamping out dementia’s stigma. That’s what makes the office an oasis for Mom and me.  

Maybe I’m too idealistic, but it seems to me that some systemic education and reminders of The Golden Rule could go a long way in turning the healthcare system from part of the desert into one giant oasis.

Can you relate?