Breaking stigma: stop saying they are “suffering”!

Yes, let’s stop referring to individuals by their diagnosis or handicaps, let’s stop saying people with dementias (and many other conditions) are “sufferers” or “suffering with the disease.” Let’s stop calling them patients, when they are individuals carrying out their daily lives.

Let’s break stigma associated with Alzheimer’s disease and other dementias by choosing our words more carefully and increasing our understanding of one another. Let’s grow compassion and acceptance through our thoughtful choice of words.

At the end of this article, the author states:

To be truthful, I have used many of the words and the terms that I am rallying against here, especially when I started writing. For example, I keep finding (and changing) “Alzheimer’s patient” in my earlier articles and posts. Some terminology, especially “caregiver”, is hard to drop completely, but I am trying. Please, if you come across “Alzheimer’s patient” or “suffering from dementia” or any other terms mentioned in this post, let me know. Please let me know! I’ll change it immediately. You can use our Contact form, but better if you leave us a comment at the bottom of the page so all can see. It is still my contention that all of us is smarter than one of us, and all of us can certainly be more helpful than just me.

The same goes for me. Please contact me and let me know if you find examples where I could change my language to empower and not reinforce stigma.

Stop Calling them Alzheimer’s Patient!

Let’s Stop Calling Them Alzheimer’s Patients and Saying That They are Suffering

The words we use do, to a great extent, influence the way we think, and the way we think, in turn, affects our actions.

Bernice as Alzheimer's patient.  Getting her cast removed.

Bernice is a patient. She is being treated for a broken arm. That doesn’t necessarily make her an “Alzheimer’s patient.”

I often hear or read the term ‘Alzheimer’s patient’ used to describe a person who has Alzheimer’s disease; the term ‘dementia patient’ to describe a person who has dementia. I read this on blogs, written by people who are intimately involved with the care of someone who has dementia of one sort or another. I hear this on news programs from high-profile news reporters and anchors and hosts, as well as from the “experts” they are interviewing. I read it in books authored by medical and care authorities, and in everyday conversations with people who are personally connected with the world of dementia.

I, for one, would like to see this convention stop. When I hear ‘Alzheimer’s patient,’ I think of a person who has dementia of the Alzheimer’s type who is visiting his or her doctor for a consultation or for treatment for that disease. Otherwise, I think of a person who has Alzheimer’s as ‘a person who has Alzheimer’s’; a person who has dementia as ‘a person with dementia.’ Outside of a medical context,“Alzheimer’s patient” is a label, and labels are, by their nature, limiting.

More and more one hears people who have cancer proclaim, “Cancer does not define me!” Tracy Seeley articulates the emotion and the reasoning behind that proclamation:

I used to think that mentioning my breast cancer at a social gathering was a bit like having spinach on my teeth. I might have brilliant things to say about a movie I’d seen, or a funny story to tell about my garden. But I feared that people would see only that shred of dangling spinach. They couldn’t hear beyond the “cancer, cancer, cancer” ringing in their ears. They couldn’t see me. (from “Avoiding the “Spinach Effect”: Not Letting Cancer Define Me” by Tracy Seeley.)

It’s the same with dementia, or it should be. Virginia Bell and David Troxel, authors of The Best Friends Approach to Alzheimer’s Care contend that, “When you’ve met one person with Alzheimer’s disease, you’ve met one person with Alzheimer’s disease.” I may not have the quote exactly right, since it has been re-quoted and misquoted and used over and over by many others making the point I am making here: Everyone is different and dementia doesn’t change that. Dementia will eventually rob one of memories and even aspects of personality, but every one of us has own unique experiences and interests that have defined us throughout our lives. Even though dementia progressively makes memories and other traits less accessible, at the core we are all individuals. Labeling anyone as an ‘Alzheimer’s patient’ does not change who he or she is at their core, but it does change how others perceive them. And that changes how they are treated.

The National Disability Authority differentiate between terms that are now acceptable and those that should no longer be used. Their reasoning is that, “…it is important to put the person first. Catch-all phrases such as ‘the blind’, ‘the deaf’ or ‘the disabled, do not reflect the individuality, equality or dignity of people with disabilities.” For example:

Term no longer in use: the disabled
Term Now Used: people with disabilities or disabled people

Term no longer in use: wheelchair-bound
Term Now Used: person who uses a wheelchair

Term no longer in use: cripple, spastic, victim
Term Now Used: disabled person, person with a disability

Term no longer in use: the handicapped
Term Now Used: disabled person, person with a disability

Term no longer in use: mentally handicapped
Term Now Used: intellectually disabled

Term no longer in use: suffers from (e.g. asthma)
Term Now Used: has (e.g. asthma)

This point might seem to be a matter of semantics, and to a degree it is. But consider the last above example. People suffer from disease. I know that when I have the flu or a really bad cold, I suffer. A severe injury causes me to suffer. I read almost every day about people who are “suffering from Alzheimer’s disease,” or about “dementia sufferers.” (Just reading that causes me to suffer a little.) When I am suffering because I am sick or injured it can feel good to have some extra consideration. It is satisfying that people around me know I am suffering and can act accordingly (like bringing me things to make me feel better). ‘Alzheimer’s sufferer’ or ‘person suffering from dementia’ are phrases used to identify an individual who has Alzheimer’s, or to make note of the fact that the person in question has dementia. The implication is that everyone who has dementia is in a constant state of suffering. That is simply not the case. A person with Alzheimer’s disease has suffered and will suffer again; he or she is not necessarily suffering now. Thinking that someone is suffering just because he or she has this or that dementia will radically change how you react to that person. How you treat that person. If you think your care partner is suffering, it will affect how you care. False expectations and beliefs create a stigma. There is a big stigma associated with Alzheimer’s disease and all types of dementia, but that’s a topic for another post—coming soon, The New Face of Alzheimer’s.

One more note on suffering: Often the suffering associated with dementia comes when we try to pull someone out of their universe and into ours, into reality as we know it. A person with dementia has lost much of the ability to exist in our universe, and as the disease progresses the ability will diminish further. Asking him what happened yesterday is almost like asking what happened tomorrow. It has no meaning in the context of his universe. Telling her to take the laundry out of the dryer, move the load of laundry from the washing machine to the dryer (and turn it on to the right heat and time settings), put the whites into the washing machine (and add detergent and maybe bleach and set the wash temperature to hot and the rinse temperature to cold and the cycle to normal), then fold the clean laundry and put it all away… You get the picture. The ensuing confusion really can cause suffering.

A note of caution: it is not enough just to replace an older, disagreeable term with a new term. To replace ‘dementia patient’ with ‘a person with dementia’ is good. To replace ‘Alzheimer’s sufferers’ with ‘the deeply forgetful’? Not so much. ‘The deeply forgetful’ is a euphemism that I see quite often lately. Deeply forgetful might apply to the character played by Drew Barrymore in the movie Fifty First Dates*, but it is only partly descriptive of the majority of cases of dementia. Memory loss is, of course, one manifestation of dementia, but there are others, depending on the cause. Alzheimer’s disease, for example, affects logic, judgment, and reasoning. Delusional thinking is often a symptom, and the disease will eventually bring physical changes including incontinence and dysphagia (problems swallowing). A common symptom of Lewy body dementia is visual hallucination. Hallucinating can be, but is not necessarily problematic; but if you are not aware of the possibility you will be confused by the conversation your care partner is having with the little boy sitting at the kitchen table. The little boy you can’t see. The idea that one with dementia is merely ‘deeply forgetful’ does not prepare you for all the eventualities that you will encounter as a care partner for one who has dementia.

Stop using labels like Alzheimer's patient and caregiver.

One more (for now); the term ‘caregiver’ is undergoing some scrutiny, whether it is applied to a person caring for someone with dementia or for someone recovering from a broken hip. More semantics? Perhaps, but our words can make a big difference in how we perceive things, and our perception of our world is, in a very real sense, our reality. To see yourself as one who is providing care to another establishes a hierarchy within that relationship; a hierarchy with you on top. Your partner will feel that and react to it. If, on the other hand, you perceive your partner and yourself to be in a care relationship, your partnership becomes something else entirely. Everything else being equal, a “care-partner” will be happier and more effective than a “caregiver” or care-receiver”. I know it is often not easy, but if you act toward your care partner as though he or she is a partner and not someone for whom you are providing care, that person will be more likely to re-act toward you as a partner, not as someone telling him or her what to do all the time.

To be truthful, I have used many of the words and the terms that I am rallying against here, especially when I started writing. For example, I keep finding (and changing) “Alzheimer’s patient” in my earlier articles and posts. Some terminology, especially “caregiver”, is hard to drop completely, but I am trying. Please, if you come across “Alzheimer’s patient” or “suffering from dementia” or any other terms mentioned in this post, let me know. Please let me know! I’ll change it immediately. You can use our Contact form, but better if you leave us a comment at the bottom of the page so all can see. It is still my contention that all of us is smarter than one of us, and all of us can certainly be more helpful than just me.

In fact, if you read anything on this website that you feel falls under the purvey or the spirit of this post, tell me about it. Do you have a pet peeve involving language or attitude concerning people who have dementia? Maybe you would like to suggest a better alternative to something, an alternative that takes our thinking a little further out of the realm of labeling.


* Summary of Fifty First Dates: Marine biologist Henry Roth finds the perfect woman, Lucy Whitmore, and falls head over heels for her. But when he sees her the following day, she hasn’t a clue as to who is he due to a rare (somewhat fictitious) brain disorder that wipes her memory clean every night. (From http://www.metacritic.com) Oh, the movie? Kind of fun and a little stupid.

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One thought on “Breaking stigma: stop saying they are “suffering”!

  1. Pingback: ‘Stigma’ associated with dementia number one concern for people living with the disease | Doctor Dementia and the Dementia Adventure

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