PWD Communication in Early stages

Tru here.  Please remember, each person’s experience with dementia can be widely different.  Not only are there many different kinds of dementia (with Alzheimer’s in the lead), but some doctors say that most people with dementia have a mixture of several types of dementia, each in different amounts.  Additionally, individual personality, motivations and life experiences create unique dementia characteristics in each individual.  So I can only give you hints for communicating with me as an early dementia patient.

VERBAL conversation with me as PWD (Person With Dementia) in beginning stages:  Must preface with fact that like many PWD I have a gigantic problem with understanding audio-only speaker (like radio or telephone).

a) My personal verbal short-term memory is severely impaired so don’t expect me to remember ANYTHING that you tell me (even for five minutes)!
b) Use shorter sentences than usual; with less extra phrases I am more likely to remember the subject, object, and verb in order to connect the sentence.  I am NOT stupid; I understand each word individually, but have difficulty connecting them as concepts.
c) Minimize descriptive monologues or conditional clauses.  (I may get the “if” part, but by the time you get to the “then” part I have lost the “if” entirely.)
d) Please wait short pause after each sentence for me to “compute” your words, then you can resume speaking for the next sentence.  The time necessary between sentences may change from day to day or even moment-to-moment (especially true with Lewy Body Dementia).
e) As an introvert (INTP analyst), try to give me a bit of silence in order to compose a response, because I cannot listen, or think, or speak at the same time.  Every function takes more time than it used to — especially thought functions.  I have list of possible responses beside phone because otherwise cannot think of words; “He is not in the house … I will ask him to call … take us off the call list”.
f) Show patience with my difficulty in getting words out; much brain energy is consumed in trying to find any vocabulary to match the foggy concepts floating around in this brain, so each word is a small success.  Nouns are especially difficult.  Do not be surprised at my “work-arounds” of giving you a description instead of the noun belonging to it.  In fact, you may congratulate me on my creativity in finding a way to communicate the concept despite blockages.
g) Really I am not purposely developing dementia in order to grow your “patience quotient” — it is just a side-benefit for all concerned.  ((big smile)) …  And the coup-de-gras; please allow me to interrupt if I raise my hand, because otherwise the thought will be forever lost.

WRITTEN communication with me as PWD (Person With Dementia) in beginning stages:

a) Much of the above information is applicable to written information as well as verbal.
b) My personal short-term visual memory is much much better than my verbal memory, so if I ask you the same question multiple times write the answer where it is easily and continually seen.
c) Info-graphics (conveying information with pictures or other graphics) are extremely helpful in my understanding of a concept.  (I suspect comic-magazine type material will be next on my reading list.)
d) My reading comprehension is greatly helped by hearing the words at the same time as I am reading them.  So I currently read my favorite books into voice recorder, to stretch my enjoyment time as long as possible.  I think this is also related to why many of us as PWD enjoy video chat even tho we have great difficulty with telephone conversations.
e) Lists are fine but when reading lists I often forget the premise or what list is about, so short lists are much better.
f) Cut written work into bite-sized thoughts — like you would for a child.
g) Double-space between sentences and Double-lines between paragraphs (instead of just indented).  It is much easier to follow a sentence if it is not just a large crossword puzzle covering the page.

If I ask you the same question multiple times there is a good chance that for some reason the answer did not “register”.  This may be because your answer did not address whatever concern caused the question, so look for something that maybe you did NOT answer earlier.  An example might be if the question is a matter of calendaring then maybe my concern is another event I think may conflict with this, and it might be helpful to visually compare the events on calendar.

If I asked a question and your answer was “I don’t know”, then I can almost guarantee I will not remember your answer so I suggest you just write it down now, BEFORE I ask you five times.  LOL to my husband!  How could you (the awesome answer man) NOT know the answer??  Of course that does not compute!!

Much thanks to husband; after I finished this article I was unable to understand what I had written so he did editing for me.

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6 thoughts on “PWD Communication in Early stages

  1. I really marvel at your posts! I only wish MIL was able to communicate with OH and I about her needs as well as you do! Thank you for sharing this – it is extremely helpful, even if ever one is different, that’s at least “something” to go on as opposed to the “nothing” feedback we get from MIL…

    Liked by 1 person

  2. Great! My specialist was trying to give me phrases that I could use when in conversation to get a responce that I could hook onto and know what the conversation is about. I understand what he is trying to get me to do, but it is not me as in me before I was diagnosed. I’ve got to think about it a lot more.

    Thankyou againi for posting this as now I’ve found so many articles.



    Liked by 1 person

    • Glad to meet you Bill!! Are you part of Dementia Mentors dot com or Dementia Alliance International dot org? … or FB site of “PWD Perspective” for making public the perspective of Persons With Dementia


  3. Thank you so much for sharing what you are going through. It is so useful and helpful. I was very inspired by your post to help others! Thank you again!! Barb Abramson

    Liked by 1 person

  4. Pingback: Repeat Questions | Truthful Loving Kindness

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