Ten years have passed since I first wrote these thoughts. During those years I have continued living with dementia and have learned much more about communication, both verbal and non-verbal. Rather than replacing the original article, I have chosen to preserve it because its central message still reflects what I believe today: relationships are what make life worth living, and communication remains the primary building block for those relationships. (update 2026July31).
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.
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Links:
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Teepa Snow website RESOURCES at http://teepasnow.com/resources/ ;
Categ: COMMUNICATION at https://truthfulkindness.com/category/important/communication-important/
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* Admin Notes — Invested ?? hours on this text, plus ?? hours on art for this entry. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. The subscription box is now located at the bottom of each blog entry. My full legal name is Truthful Loving Kindness. My current formal diagnosis remains at the stage of Mild Cognitive Impairment, although my Primary Care Physician and several other medical professionals consider it some form of dementia; my PCP records currently state “Dementia without behavioral disturbance, unspecified dementia type.” In recent years, my PCP, my husband/care-partner, and I have jointly decided to discontinue specialist consultations, as the distance and emotional strain of repeated evaluations are not worth the cost to my well-being. My symptoms most closely resemble Lewy Body and vascular dementia patterns; however, SPECT and PET imaging show the most significant brain changes in the temporal lobes, creating overlap with the logopenic variant of Primary Progressive Aphasia (PPA), a subtype within the frontotemporal dementia spectrum. Nothing in this blog is meant as medical, legal, or service dog advice; what I share here comes from lived experience—an attempt to design around decline and make daily life more workable—so please use your own judgment and consult professionals who understand your specific situation. Text Copyright © Truthful L. Kindness, 2016Jan26 with revision 2026July31. You can learn more about me under the “About Me” tab (note: that page is due for updating). Comments are welcome—please filter them through truthful loving kindness toward all concerned. As of 2026, I use ChatGPT as an editor, which improves readability and reduces the time I spend in the writing process. I do not mind re-posting of my work; however, if you do re-post, you must clearly indicate that the writing is not your own, prominently identify my authorship as Truthful Kindness, and include a clear link to my website so that questions and comments can be directed to me personally: at http://www.truthfulkindness.com.
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