Importance of Communication with PWD

819 Blog 20160126b commun 3in100ppi

Tru here.  Some people may think I over-emphasize the issue of communication and relationships.
In contrast, personally I think that it is impossible to over-emphasize their importance;
Relationships are what make life worth living,
and communication is the primary building block for relationships.

According to Merriam-Webster “communication”, at its simplest, is “the act or process of using words, sounds, signs, or behaviors to express or exchange information or to express your ideas, thoughts, feelings, etc., to someone else”.  (Personally I might modify that to with “another entity” in order to include non-human communication  —  and then again …  I think information-exchange between different parts of SELF is also a form of “communication” so maybe would prefer Wiki definition instead.)  Wiki says communication “(from Latin commūnicāre, meaning “to share”[1]) is the purposeful activity of information exchange between two or more participants …”

I see verbal and non-verbal communication as the primary building block for relationship,
relationships as building blocks for “community”,
communities (of many different types) as blocks for building a nation, and eventually
… for the world.

Communication is primary pivot-point for all the major topics surrounding the “dementia” issue today (that I can think of):

  • Education: good communication, between the voice of PWD (Person With Dementia) and professionals or others, is essential for public (and especially “professional”) education on topics pertinent to today’s “dementia” issues.
  • Stigma: poor communication creates stigma — and good communication in education will be necessary in order to resolve stigma in positive way.  I believe political coercion rarely resolves stigma in a way that produces lasting positive relationships with the contrasting parties involved.  It may be possible … but I think it rarely occurs and often requires decades to resolve the damage.
  • Financial: poor communication perpetuates lack of funding or “improper” funding — and good communication is necessary in order to resolve funding issues in positive way.
  • Medical: resolving medical issues requires that our medical professions learn to communicate effectively with PWD patient – but all too often (even in early stages like mine) the medical professional has no time or does not have necessary tools to communicate effectively with PWD, so they focus their communication with care-partner.  That is a lose-lose situation because in addition to the patient losing communication and relationship with the medical professional, the professional loses opportunity to learn greater communication skills that can only be consolidated thru experience.
  • The same is true in legal, spiritual, and any other realm I can think of.

As my friend Helga said, “Give us a VOICE – listen to us : we Tell You what Dementia friendly means” – Helga Rohra 2016 Jan 22

(… but that means you must LEARN how to communicate effectively with us.)  In my advocacy efforts I have seen over and over that those who are trying most to help us do not really know how best to communicate effectively with us — or if they KNOW the information they are not able to apply (maybe due to time pressures?).  Over and over again, written (hard copy/digital), audio (my own specialist appointments and “dementia” conferences), and body language — all show either lack of knowledge or lack of time.  PLEASE take the time, show the interest and learn the skills !

“Good” communication requires both out-going and in-coming transmission for the parties involved, … but both transmissions become progressively impaired with all types of dementia at differing rates and categories.  Audio & written, verbal and non-verbal, these impairments create huge problems in communication and require numerous work-arounds by ALL parties who wish to continue communication.  This is a huge subject which I have barely begun to address.

As I have implied above, I think communication is much more than just verbal.  The arts are a major means of communication and that is why I include so many, and such variety of projects here in my blog and newsletter links.  Whether more established types of art like photography, music, woodwork, etc … or simply the creativity of re-purposing materials, or gardening, arts and crafts are a very direct and effective means of COMMUNICATION.

Learning non-verbal communication became especially crucial in training and use of service-animals.  Body language and behavior are always tools for COMMUNICATION between entities, but specialized education is needed in order to receive, understand, and respond to these non-verbal types of communication appropriately, because geography, culture, personal history and individual personality can highly impact this specialized language.

Personally, if there was only one thing I would ask my family to learn, it is the highly specialized non-verbal languages of later-stage dementia.  Learning these NOW would give relief to my concerns for huge misunderstandings and relationship “fall-outs” in my future years.  And for these things Teepa Snow is the best teacher I know of.  So I have financially invested in several of her recorded series, in hopes that my family will, in turn, invest the time and energy needed to learn these language skills.

Sometimes I hear that the PWD is “fading”.  That word always makes me angry because it is important to differentiate between abilities and personhood.  Yes the ABILITIES of PWD (Person With Dementia) are fading – including the abilities for various types of communication.  Because the PWD communication ability is fading, their PERSONHOOD appears to be fading.  This is a totally-unproven theory.  In fact, sometimes in their last days, persons who had seemed to be “vegetable” will almost-supernaturally briefly recover, and verbally communicate.  That could not happen if their personhood was gone!

Be willing to invest NOW in learning communication skills for the later stages, so that you can more easily discern the language spoken in the “fading” communications of late-stage dementia … because relationships are what make life worth living.

Links:

616 JennB 20151222speak 3in100ppi.

Excellent suggestions from PWD retired Dr Jennifer Bute for Helping PWD Speak

at https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/helpg-pwd-speak/ ;

819 Blog commun ECT 5in200ppi.

… AUDIO at https://truthfulkindness.com/2014/12/12/suggestions-understand-audio-communication-dementia-symptoms/ ;

819 Hands Anchor Me 6in.

… NON-verbal at https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/ ;

.

Richard Taylor PhD had entry “What happened to my Nouns” here >> http://www.richardtaylorphd.com/blog/entry/51-what-happened-to-my-nouns.html but it is not available today.  I will leave the link in case it is a glitch.

819 RobertBowles pic 4in.

… PWD Robert Bowles wrote about example of poor Doctor communication skills

at http://lbdlivingbeyonddiagnosis.com/my-blog/dealing-with-physicians ;

.

Susan Speech Aug2014Lo.

…  PWD Susan Suchan made video on efforts for speech work-arounds

here >> http://www.newson6.com/clip/10916032/fly-the-coop-alzheimers-patient-fights-to-keep-communication-device ;

.

616 HarryU pic4FMN20150928b 5in100ppi… PWD Harry Urban has many entries on relationships / communication

here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/ ;

819 blog 20151222 BackGrnd Noise 3in150ppi

another entry of my own on audio communication

at https://truthfulkindness.com/2015/12/22/drt-background-noise-2015-12/ ;

 

Merriam-Webster at http://www.merriam-webster.com/dictionary/communication ;

Teepa Snow website RESOURCES at http://teepasnow.com/resources/ ;

Categ: COMMUNICATION at https://truthfulkindness.com/category/important/communication-important/
.
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9 thoughts on “Importance of Communication with PWD

  1. All forms of communication are very important. I don’t think there could ever be too much emphasis on communication.
    From talking to hugs and holding hands, it’s all important.
    My mother and I communicated by holding hands and hugs.
    I was able to communicate by watching her expressions.
    It’s all so important. Thank you for posting.

    Liked by 1 person

  2. Dear Truthful Loving Kindness,
    I am so glad I somehow found your website. Many moons ago you recommended a book on the Alzheimer Association forum, which quickly became my favorite dementia book : Deeper Into The Soul. As you know, books that address the spiritual aspect of the illness are rarer than a hen’s tooth, and this book is a treasure.
    I wished you could relate to the authors my sincere appreciations and gratitude.
    You are a bright light on the dementia road, and I am looking forward to reading your blog. I hope you can still find blessings along the way. Fondly, Ruth

    Liked by 1 person

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