Monday, May 3, 2010

"Demented Patients": A terminology rant

I would love the input of GeriPal readers on an issue. The commonly used phrases, "demented patient," or "demented person," or "the demented" have long made me feel uneasy. I am much more comfortable with phrasing such as "patient with dementia." My question: Am I allowing myself to be consumed by semantics? Or am I onto something here?

I can not fully articulate why "demented patient" bothers me---in part because the reaction may be more emotional, and perhaps because I am not facile enough with language to understand how subtle changes in wording impact the emotional response to how we speak. But here is my best effort:

Perhaps it is because when "demented" is used as an adjective or noun, there is a suggestion that dementia has become a fundamental part of someone's personhood or identity. Also, "demented" as a term may carry historic baggage. Historically, "demented" has had a broader and more pejorative meaning than being afflicted with an illness affecting cognitive function.

Of note, most dictionary definitions of "demented" list descriptions such "mad or insane", "deranged", "lunatic" , "irrational", or "crazy, unbalanced or unhinged." as the first defintion. "Afflicted with dementia" only appears as a secondary definition (see Miriam-Webster, dictionary.com, encarta, wordreference). Seeing these definitions, it strikes me that in the past, the word "demented" must have had highly negative connotations---ie, someone with highly undesirable behavioral characteristics, rather than someone afflicted with an illness, deserving of care and compassion.

On the other hand, when this term is used nowadays, the historic negative connotations are rarely intended. For example I have heard health professionals who are exceptionally committed to their patients use this term. They just intend to convey the concept of a patient afflicted with dementia, and would abhor any negative connotation. Maybe the problem is not the language itself, but the negative societal views of dementia---and maybe it would be better to be concerned with countering these negative views rather than worrying about semantics.

Still, if I had my way, I would ask that we abandon the use of language such as "demented patient" and instead say "person with dementia". But I'd love to know what others think.

9 comments:

Alex Smith said...

Perhaps more important for dementia, given the pejorative connotations you mention, but true nonetheless for all forms of illness. In medical school, John Swartzberg taught us the dangers of "labeling" people by diseases they have: "heart failure patient," "cancer patient," "vasculopath." It's better to recognize that people live with illness, but should not be defined by them. Although it's less efficient, we were instructed to say "woman with heart failure," "patient with cancer," or "patient with vascular disease." I used to be better at paying attention to this than I am now. Good to be reminded.

Ab Brody, RN, PhD, GNP-BC said...

I am with you on this one Ken. When I hear 98 year old demented patient with CHF, I have a visceral reaction. Seems like the demented patient is the focus and not the CHF or the [insert illness here]. It sings to me that this patient is going to be a pain, difficult to deal with and we want to get them out of our hospital and/or clinic asap/I don't want to deal with this issue. This mainly is related to the lack of training our clinicians receive in how to work with patients with dementia, and with the lack of or conflicting evidence based practice on how to manage patients with dementia in all settings.

Carla Perissinotto, MD said...

I agree Ken. In my anthropology classes we also talked about how we label people because the descriptive term ultimately ends up as an integral part of the identify--disabled person or demented person. Given the lack of understanding of the degrees of dementia, when this label is used, I think in someway, for some, that translates into--> demented, therefore doesnt understand, therefore we shouldnt communicate with them or value their life. I think the shift in language is appropriate.

Ori Tzvieli said...

Well said. Another thing that makes "demented" unskillful is it's lack of specificity. Dementia is so broad in it's spectrum, that just saying "demented" creates uncomfortable ambiguity. I hear residents presenting new admits almost every day. When I hear "demented" from residents the thoughts in the back of my mind is "are they verbal or nonverbal?", "is the patient paranoid?", "are they living independently?", "can they feed themselves?", "does the patient have decision making capacity?", "Are you telling me that because you want to be less aggressive in their management?", "are you telling me that because you are not sure what component dementia plays in the patients' mental status changes?" etc.

I sort of think of demented like I think of the term CHF...clinically useless without further modifyers. And I am much much more likely to get those modifyers when someone says "patient with [isert adjective here] dementia" than when I hear "demented patient".

Janice said...

I agree with all the comments yet my most promient feeling is one of disgust with whoever is labeling the patient. It is incrediably judgemental and sometimes even a form of bigotry. It is right up there with the patient failed treatment or chemotherapy.

Patrice Villars said...

A rant on terminology. I am so in. I remember as a student observing an NP interaction with a young women with breast cancer. "You're a diabetic, aren't you?", the NP asked. "I am a person with diabetes," the woman replied indignantly. Yes, we are people first, some of us living with many different diagnosable illnesses. The one that really irks me is "She's a schizophrenic." As if living with these illnesses isn't hard enough, now we merge the person and illness as one. (Can we talk about the word "terminal" yet? I hate that word.)

Jeanne Lahaie said...

Thank you for your "rant" about this. You are not alone in finding it bothersome. What's worse is that those who cannot differentiate delirium, dementia, and depression may designate any patient who is confused as having dementia. Grrr. Or rather, grrreat opportunity for a teaching point. Nurses and other health care professionals in my Care of the Geriatric Patient and Behavioral Management class said they thought the class should be mandatory training because they could then understand the problems of misidentification and sometimes the inappropriate treatments/interventions that resulted. I think what bothers me about the term "demented patient" is that it ignores the progression and type of dementia as well as many other factors and stereotypes the patient. A person with dementia may not be able to converse about his pain, for example, but he may tell you with his hands pushing you away that what you're doing is unpleasant and possibly aggravating vs. relieving the pain. If you assume that a person with dementia cannot articulate his pain at least in the way that you may recognize, you would completely miss what the patient is trying to communicate. A person with dementia trying to push away a caregiver who is focused on the task only has the same needs as a patient who can report 10/10 pain. The caregiver who is focused on the task instead of the person with dementia may deem the behavior "agitation" and reach for the Ativan instead of the morphine, for example.

I think it's important to pay attention to subtle differences in language for these reasons. Thank you for making this excellent point.

Sangeeta said...

Echoing everyone else here - using a diagnosis as an adjective is an automatic and usually superfluous descriptor of a person. It also calls into question the generalizability of the understanding of the diagnosis. Moreover, as providers and researchers, I think it is our responsibility (using the powers granted to us by our patients or our audiences) to help shape a more sensible and sensitive understanding by "lay persons" of different medical conditions. So, I think it is particularly relevant for us to pay close attention to how our use of language reflects our own biases and contributes to others' understanding, and correct ourselves accordingly.

Anonymous said...

Thank you for this post as I too find it bothersome. I am a Gerontologist and work with professionals who often refer to people with a dementia diagnosis as "demented." I feel it is an inaccurate description and cringe every time I hear other professionals in the field use it.