Patients in Dementialand

Let’s talk about patients.

You probably think that’s a typo. I know that it’s not rare to see a typo in my blog. You probably think I meant patience–but I didn’t.

I want to talk about dementia “patients.”

First, an analogy…

My husband, Bill, has had terrible acid reflux since adolescence. He takes medication everyday. He’s visited multiple specialists. He has been to Mayo Clinic to talk about a potential surgical option and had frequent endoscopies. Since I’ve known him, I’ve seen him make many decisions due to acid reflux–what he eats and drinks, when he eats and drinks, when he exercises, how he positions his body when he sleeps.

People do not refer to Bill regularly as an acid reflux patient. I’ve never heard anyone say “I’m going to lunch with my buddy Bill, the acid reflux patient.”

I have allergies. I have dry eye syndrome. I have an immune issue called neutropenia. I’m not regularly called an allergy patient, a dry eye syndrome patient, or a neutropenia patient as I walk around as a human being on this earth.

I’m not defined by my diagnoses.

Yet, whether it is in the context of receiving medical care or not (and it’s generally not), people with dementia are regularly called dementia patients.

A patient is, by definition, a person receiving medical care. We all receive medical care at some point. We are all patients sometimes.

When people with dementia are at SuperTarget or Starbucks, they aren’t patients any more than I am when I visit such establishments.

When I see someone living with dementia out for dinner, they are not a dementia patient. They are just a human being enjoying an oversized plate of food and possibly a cold beer–and they happen to be living with dementia.

Recently I spoke with a woman who works as a waitress at a local BBQ joint. She told me that they serve a lot of dementia patients. I pictured the hospital bringing them over on a bus attached to IV poles.

I recently saw a headline that read: “Dementia Patient Runs 5k.”

Unless that person was running along with a doctor beside them discussing their recent symptoms, they were no more a patient than I would be when I ran my last 5k in October. They’re a person living with dementia.

We are patients when we are in the hospital. We are patients when we must visit urgent care. We are patients when we show up for a yearly Pap smear or when we turn our heads and cough.

What’s with referring to people with dementia as patients all the time?

I often hear the term “nursing home patient,” which also frustrates me. We are working to promote a more home-like environment in nursing homes. We want to promote a culture where people are comfortable in their surroundings—because, well, they live there. You are not continuously a patient in your home. Let’s work on using the term “nursing home resident.”

By defining individuals as patients, we define them as sick. We reference them by their relationship to the medical industry and their diagnosis rather than as a human being. The term patient implies a helplessness and passivity that is often not present in the people living with dementia that I know. When someone is referred to as a patient rather than a person, a different image comes to mind.

Let’s focus on the person.


13 thoughts on “Patients in Dementialand

  1. As a chaplain at nursing homes for 25 plus years I know that no one refers to the people there as patients. The folks are the residents. It is a tough neighborhood to live in no matter how nice the facility because the neighbors have names like depression, isolation and loneliness. I love your post and wondered if you have heard of the new approach called something like memory care village. In these they construct an entire mini-village complete with stores a public square and barbershop. Having spent countless hours visiting in locked memory care units, which however nice are pretty claustrophobic I am intrigued and wondered what you thought. Blessings and thanks for sharing.


  2. Amen. Good article. My wife has FTD, but most of the time you wouldn’t know it. If we focus on it too much it takes the joy out of our lives. So the majority of the time we just live our lives. We


  3. Spot on! The medical model of care that is still so pervasive in our society perpetuates this. It is time for the world to get on board with the new culture and recognize the personhood of those living with dementia. See the person, not the diagnosis.


  4. I don’t much like the term living with dementia either !! Do we undermine the suffering people with dementia go through daily ? You don’t use the term living with cancer or living with epilepsy etc ….


  5. Another excellent post!! Thank you for continuing to raise awareness in so many areas.

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