Dementia “Suffering” Terminology -Part 2

819 blog 20151203 Suff2a 3in125ppi

Quick summary of this blog entry:

Regarding restriction of term “suffer” in connection with the dementia experience, continued from earlier blog this week (link bottom of page).

  •  I agree with the goals for this language guideline;  to prevent stigma of profiling the dementia diagnosis as instantly totally debilitating and characterized by life-style of trauma
  •  I question productivity of attempt to change definition for term “suffer” in meeting this goal, which has become the red flag of conflict.
  •  It seems current attempts at language guidelines are in a no-win WAR with un-productive polarization of views within community of Persons With Dementia (PWD)  … and also within support, care-partners and journalistic sector, … and rampant antagonism due to mis-understandings in both communities.  But I don’t think dropping this project will rectify the antagonism that has now developed.
  •  So in order for the “suffer” vocabulary change to succeed, I think we need to come up with some method of communicating what people are seeing now as only the “small print” — the details which are sometimes un-written.

PERSONALLY,  this is currently how I see these details that need communicated (in Dec 2015 but subject to change as have not discussed with anyone else, and hope to avoid this subject again for a long time):
A. We recognize this is a change to the dictionary definition of verb “suffer”, but feel the results may be worth the effort, in order to prevent stigma of profiling the dementia diagnosis as instantly totally debilitating and characterized by life-style of trauma.
B.  Gather support from medical community to exclude ALL medical conditions in definition of “suffering”, as merely from having the condition.
C. We are asking the rest of the world to eliminate their use of term “suffer” from “dementia” vocabulary, but persons with dementia symptoms still have the freedom to describe their own symptoms in any way they see applicable to self.
D. We are not denying existence of various types of pain and unpleasant events (financial, social, emotional, etc) in the dementia experience, merely stating that each experience of pain or unpleasant event is different for each person, and each person is different in how they react or respond to the various types of pain and unpleasant events.

819 blog 20160202 sufferer3b 3in100ppiUPDATE:
Finished part 3 of this subject in 2016
at https://truthfulkindness.com/2016/02/02/sufferer-part-3-the-linguisticcommunication-issues/

…   *  …   *   …

Full Blog Entry:

Tru here.  Hoping to clarify my blog from earlier this week, and maybe eliminate some misunderstandings.  The two blog entries this week are the first time I have addressed subject of “suffering” terminology since 9 months ago in February, with https://truthfulkindness.com/2015/02/24/dementia-change-priority-pathways/ , where I included one paragraph on the subject, beginning with the following statements:  Don’t get me wrong; yes, I “suffer” from my dementia symptoms.  And please do not complain about me using that term; as a Person With Dementia I personally am the ONLY person who has the right to say whether I suffer from my dementia symptoms. …  ((At that time I was under the working diagnosis of “dementia” but that working diagnosis was later changed to Mild Cognitive Impairment –MCI.))

The reason I said that is because shortly after my tentative “dementia” diagnosis, I had been admonished (maybe 2013 ?) by a couple folks for using the term “suffer” in connection with my own symptoms, along with correcting me for inappropriate use of the term “patient”. So I researched origin of these restrictions. It was all very confusing and I am still not able to remember all the new “rules”. The primary result of these admonishments was that I was more reluctant to speak in public, for fear of forgetting or mis-application of the new politically-correct terms.

It is easy to understand why others would feel need to admonish – they generalized (mis-understood?) this instruction as saying:
1. Collectively, the majority of Persons With Dementia (PWD) are offended by term “suffer”. (Personally I think this is a misunderstanding of guidelines, since I don’t think any current PWD gathering has the ability to represent “majority of PWD”; that would be a gigantic undertaking, as I explain at bottom of this blog entry.  Mostly these guidelines represent opinion of small groups of Persons With Dementia, and there is far from universal agreement on them.)
2. Collectively, majority of Persons With Dementia (PWD) believe that they do not experience “suffering” events of any type from their dementia symptoms; physical, mental, emotional, social, financial; no “suffering” occurs. (Personally I think this is a misunderstanding of guidelines  … but often unclear.)
3. The term suffering should not be associated with the dementia experience, either in written or verbal form, by anyone.  (Again, personally I think this is a misunderstanding of guidelines, because I believe PWD speaking of their own lived experience was meant to be an exception.)

Among PWD, just as the rest of public population of the globe, there are many different perceptions of the verb “to suffer”.  While growing up, my father had a hobby for dictionary and encyclopedia, so we frequently addressed them as resources.  Expectation was that vocabulary usage would comply with dictionary definitions.  I opened blog entry from earlier this week with dictionary definition, so will not belabor the point.  https://truthfulkindness.com/2015/12/01/drt-yield-communication-priorities-pwd-suffering-terminology/
Lately I have discovered several PWD perceptions of term “suffer”:
A. Limited to experiencing physical pain (not including mental, emotional pain, etc).
B. Limited to the (voluntary or involuntary) reaction or response to those unpleasant or painful events of life (not the events themselves).
C. Physical, mental or emotional events that are unpleasant or painful (but not medical condition).
D. Unpleasant/painful events in any type of categories (physical, mental, emotional, social, financial, etc) OR a medical condition — whether involving unpleasantness or not.
This last perception most clearly matches dictionary definition for “suffer”, and thus for the noun use of “one who experiences suffering” = “sufferer”.  All persons have a different perception of words, with large variation in location and culture, thus the need for dictionaries.  And so goes the changing nature of language when language usage changes — especially when we are talking about a large landscape like the full globe.

Early in my dementia experience, I was part of a PWD conversation for subject of terminology to find out what the CURRENT thoughts were in this particular group of Persons With Dementia (PWD).  After listening to others, when opinions were asked for I really wanted to speak.  But I had not prepared a statement for my thoughts on the subject (so it would have ended up unproductively scrambled and no one would understand what I was talking about) and PWD emotions were so strong in the meeting that I was unwilling to create conflict – so I kept my mouth shut and went with the flow. I guess they call that “peer pressure” and wonder how many others were thinking the same thoughts. I understand goals and rationale of the language guidelines. It’s just that personally I am not in the least offended by dictionary meaning for term “suffering”.  I think it an appropriate term and am concerned that this action might create a no-win result. I AM offended by several other terms, but recognize that as my own problem with my own perception of language.  https://truthfulkindness.com/2015/07/07/feeling-left-out-with-dementia-symptoms/.  I know there is large disparity in local or cultural usage of terms, and question the productivity of attempt to change vocabulary on a global level. Despite that fact, I was one of the contributors toward USA DAA document http://daanow.org/wp-content/uploads/2015/09/Living_Fully_with_Dementia-Words_Matter__9.9.2015.pdf in July 2015.

Currently, I think the language efforts to eliminate use of term “sufferer” are counter-productive, but in large extent due to mis-understandings of those guidelines.  I think this attempt might be more successful if it was bluntly recognized as an attempt to change the definition of term, and support was gathered first from medical community to exclude ALL medical conditions as “suffering” merely from having the condition (category number 2 in definition for each of the three dictionaries I checked online).  The term “suffer” now seems to be creating a red flag of un-productive polarization and rampant antagonism, I think mostly from mis-understandings.  The perception is that the guidelines are implying that experience of dementia, and experience of discomfort or any type of pain are mutually exclusive, which is inaccurate  — but nevertheless that is what folks think is being said.  Some folks then are offended at trivialization for pain of their own dementia symptoms or their loved-ones’ experience — and other folks accept that misunderstood trivialization as fact, assuming that the dementia experience is merely a minor irritant.  Either way it creates huge problems and a no-win scenario, but, again, as mis-understanding of guidelines.

The original goals of these projects are very valid concerns.  The projects are creating a big stir, but I think something different is needed in order to clarify the huge misunderstandings currently created.

We cannot reverse time and undo this effort (despite my own misgivings on whether success on this effort will meet the need in any meaningful way for preventing stigma of profiling the dementia diagnosis as instantly totally debilitating and characterized by life-style of trauma).  So in order for the “suffer” vocabulary change project to succeed, I think we need to come up with some method of communicating what people are seeing now as only the “small print” — the details which are sometimes un-written.
PERSONALLY,  this is currently how I see these details that need to be effectively communicated (in Dec 2015 but subject to change):
A. We recognize this is a change to the dictionary definition of verb “suffer”, but feel the results may be worth the effort.
B.  Gather support from medical community to exclude ALL medical conditions as “suffering” merely from having the condition.
C. We are asking the rest of the world to eliminate their use of term “suffer” from “dementia” vocabulary, but persons with dementia symptoms still have the freedom to describe their own symptoms in any way they see applicable to self.
D. We are not denying existence of various types of pain and unpleasant events (financial, social, emotional, etc) in the dementia experience, merely stating that each experience of pain or unpleasant event is different for each person, and each person is different in how they react or respond to the various types of pain and unpleasant events.

Hopefully this entry clarifies my thoughts on this subject for a while, and I can put this subject way back on back burner.  I see my mission as: to reflect Truthful Loving Kindness while collecting and analyzing data about myself and my own dementia symptoms, writing about them weekly in this blog.  I collect projects by other PWD (Persons With Dementia) and make various pieces of that collection available to others, both by creating pages on my blog for others, https://truthfulkindness.com/index-persons-with-dementia-pwd/  and on a monthly basis thru the online collection of links called the dementia “Symptom Perspectives” https://paper.li/f-1408973778 creating a categorized database of material for professionals to easily find PWD lived experience and opinions.  Considering the extra time consumed by my own mistakes and complications from symptoms, this requires many hours of my week.  When able to hold a job, my work-week was frequently 60 hours plus 2hrs transit time each day, and I am sure that I have less “free time” now than I had then (spouse agrees).  Political aspects like politically-correct language are not in the top priorities for my mission, so must stay on the back burner.  That is why it has been 9 months since I addressed this issue at all.  And with this entry I hope to leave it behind me for many more months.

Links:
819 blog 20151130y 3in150ppi…  Part 1 of this subject:

https://truthfulkindness.com/2015/12/01/drt-yield-communication-priorities-pwd-suffering-terminology/ (with comments);

(( I think neither bullying nor quietly simmering resentment is productive to goals for co-workers in efforts for dementia awareness and inclusion of PWD voice.  Since I am personally very uncomfortable with conflict, I am now working on Part 3 installment for this subject; still hoping for some unifying constructive effort that could possibly be agreed upon by most PWD at least.  LOL; Not only do I dislike to participate in competitive sports, even board games feel like conflict for me … so being “in the middle” for this “debate” is very uncomfortable and actually unhealthy for my stress level.))

819 blog 20160202 sufferer3b 3in100ppi

Part 3 of subject: https://truthfulkindness.com/2016/02/02/sufferer-part-3-the-linguisticcommunication-issues/

 

Alz Society announcement Nov 26, 2015 at https://www.facebook.com/alzheimerssocietyuk/photos/a.137638944646.108007.8270524646/10153669215994647/?type=3&theater (with 74 comments);

 

819 blog 20150707a 4in150ppi… Terms I personally find offensive:

https://truthfulkindness.com/2015/07/07/feeling-left-out-with-dementia-symptoms/;

DAA in USA:  http://daanow.org/wp-content/uploads/2015/09/Living_Fully_with_Dementia-Words_Matter__9.9.2015.pdf

DAA in UK:  http://www.dementiaaction.org.uk/dementiawords;

Australia Guidelines:  https://fightdementia.org.au/sites/default/files/full-language-guidelines.pdf;

DEEP Guidelines:  http://www.youngdementiauk.org/sites/default/files/DEEP-Guide-Language.pdf;

June 23, 2014 DAI webinar: Words About Words at https://www.youtube.com/watch?v=5b1pD_WSn3w;

My most recent mention of “suffering” issue (in February) https://truthfulkindness.com/2015/02/24/dementia-change-priority-pathways/;

Another interesting link (by Nick Cohen):  http://blogs.new.spectator.co.uk/2014/06/the-cheating-language-of-equality/

Note:  For long-range projects on “collective” opinion, peer pressure is a big concern of mine, along with individually-tailored, multi-format of address to Persons With Dementia.  Yes; would love to see some kind of collective statements on language — but would need gigantically huge outlay of time and energy to come anywhere even close to that goal, because each individual’s symptoms affect communication in a different way.  Some folks’ symptoms create more problems in group visual chat format.  Some folks no longer have the ability to communicate well in written format, and some folks need one-on-one visual format.  Other folks’ symptoms are too advanced for technological use, or they do not have access to technological tools in order to communicate easily, and then transportation issues come up.  I think any type of collective statement would need to be large scale in number of participants, locality/culture of participants, and with a wide range in symptom-severity of participants.  Otherwise it becomes a mixture of popularity contest and who speaks loudest with the most emotion.  Neither of these options will produce a true “collective” representation for opinions of Persons With Dementia.

 

819BMPB 1989Feb Damn 3x4in130ppi10hrs on text, & 2hrs trying to recycle background graphic

from my piece titled “Damn, It Hurts !”

link at  https://truthfulkindness.com/bnp/part-2/2e/1989-feb-damn-it-hurts/

;

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10 thoughts on “Dementia “Suffering” Terminology -Part 2

  1. Hi Tru Wow you put a lot of thought and work into this post and the prior one. I appreciate all of your efforts. I agree to change language is not easy. I see like using the word Caregiver or Care Partner or Care Companion or how people were calling all dementias Alzheimer’s (through there is a definite difference) It’s all about having the conversations using the “people’s” current terms and then discussing use of and perception of the words we use. I’ve found it amazing how open people are to change once the conversation is had. I see huge changes happening, in small ways with little time and money invested. Thank you for having an open format for the terms. Keep up the great work!

    Liked by 1 person

  2. No one is asking to change the dictionary definition. Indeed the dictionary definition for “retarded” still stands. And no one is asking doctors to change anything. How did you jump from a “media guideline” to these conclusions? You sure did do a lot of work, and you are such a beautiful and wonderful person, that I hate that I disagree with you so much on this…but I do disagree. You, and everyone, are free to suffer all you like. You, and everyone, is free to call THEMSELF a “sufferer,” but what you and others are NOT free to do, not without offending many, is refer to others as sufferers. Not sure why you are fighting for the right to call me a sufferer, when you clearly (by now) know it offends me…just not sure what your motivations are in all this. But it all makes me a bit sad and perplexed.

    Like

    • HI Faith I did not get that at all when I read this. In fact, I think you and Tru are very aligned in many ways. this might be a great discussion for Dementia chats this Thursday! What do you think ladies? Or would it br too exhausting? Just let me know.

      Like

  3. I think the biggest issue I have with this is that MCI (mild cognitive impairment) is NOT dementia in all cases.Truthful never addresses this or acknowledges that she understands MCI is not a diagnosis of dementia. MCI is an umbrella for many other physical illnesses of which a form of dementia can be one, but rarely. Saying that you have MCI and maybe someday will develop Lewy Body disease, does not give you the right to speak on behalf of those people with dementia.

    As an RN, I find her writings a disservice to the people (those diagnosed and those who are caregivers) who are currently struggling with various forms of dementia and worrying about terminology should be a non-issue.

    Like

    • Nikki. You have the right to your opinions and I will approve this ONCE more, however this will be the last time. In past you have given medical suggestions but you are NOT on my medical team. Suggest you simply discontinue reading my blog.

      Like

  4. Pingback: DRT: Yield to communication priorities; PWD “suffering” terminology | Truthful Loving Kindness

  5. Tru, I have only responded to two of your blog entries. The first one you didn’t post because you said you couldn’t find it in your ‘in box’. Uh-huh. As I suspected from the get go when I started reading your blog a year or so ago, you only post those comments that tell you how wonderful you are, how accomplished, how brave you are. You don’t post (or you remove) comments from individuals who call you out on your nonsense or ask you direct questions about your diagnosis. From what I’ve gathered in your prior blog entries and on FB, you don’t have a ‘medical team’….you are ‘shopping’ for a diagnosis of dementia and not getting it…..because either you don’t have any form of dementia, or your MCI symptoms are related to something else….probably psychiatric in origin, not organic. I’d further hazard a guess that given all the other physical issues you claim to have, you’ve been riding the ‘gravy train’ of disability income since your alleged ‘Lyme’ diagnosis and you’ve chosen dementia as your next target for disability benefits. It’s harder to diagnose and being the little actress you are, you read the symptoms and experiences of others and incorporate them into your little repertoire for each physician you visit. Problem with that is, your ego won’t let you not want to show off how bright you think you are. You want to impress everyone with your activities but I can assure you, if you truly have had a form of dementia for as long as you’ve been saying you’ve had symptoms, you wouldn’t be able to do what you are currently doing with your writings and newsletters.

    Stop reading your blog? Not a chance. I refuse to let you deceive those who DO have a bonafide dementia diagnosis with your bullshit. I will comment on any other blog you are published in as well.

    Like

  6. Hi Tru,

    I am sorry you are being attacked for your thoughts and as well as your diagnosis. I believe it’s important to allow others to voice their opinion as long as it is in a respectful fashion. To me personal attacks are not helpful. I understand your blog, your opinion and know that it is not a medical journal. Everyone has their right to their opinion and free speech, including you and many agree with and respect your insights. If others want to express their opinions I would recommend they do so in a respectful manner or maybe they should start their own blogs vs attacking others.

    Liked by 1 person

  7. Pingback: Sufferer Part 3; The Linguistic/Communication Issues | Truthful Loving Kindness

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