Value for Lived Experience of PWD as Contributor to Dementia Friendly Community

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Tru here.  Been VERY busy preparing to speak at ADI 2015 Conference in Perth Australia this month. “PWD Dementia Success Stories” booklet should arrive from printer any day, and we leave in less than a week.  My suit for speaking is almost finished – just a little bit of final stitching to do. Realize most will not be able to attend this conference, so thought you might be interested in my oral presentation; current draft (along with slide presentation) is below.  ((PS:  Will be flying from late Sunday until Tuesday night, so will not post again until we return home the first week of May.))  :

 Update: Full video now available at link below.

UPDATE:  Below is actual transcript from speech given.

Okay; 15min on:

“Value of PWD Lived Experience as contributor to Dementia Friendly Community”;

Hello.  I’m Truthful Loving Kindness.

If I am a Person With Dementia, (PWD) and my brain is dying … what can I personally contribute toward Dementia Friendly Communities?

I can share my Lived Experience;

… what particular swiss cheese of dementia symptoms I have;

… what areas of life have holes instead of cheese and skills,

… and how to make the most of the skills that are left.

… in hopes that you, as Coach, Professional, or Loved One,

can apply that lived information in your relationships,

because … “Community” is made up of relationships.

So … diagnosis:  My cognitive problems first became noticeable in the year 2000,

but it took 12 years before I got even a tentative diagnosis for dementia.

…  How can you personally apply that information in YOUR relationships?

…  Often dementia is a gradual slope,

so do not assume that diagnosis means the next step is adult diapers and a care facility.

If you are a person without dementia then help the Person With Dementia (PWD); help the PWD make appropriate legal preparations, so that job is not hanging over our head,

… but acknowledge the fact that we have a lot of living before we get to end stage.

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(( Slide change = Success Stories; “I did know how to do this – there!”))

In order to emphasize that fact, my friends and I put together a booklet called “PWD Success Stories”. There are free ones over there on the table, and I see some over there too. They are free but this project is funded by my own wallet, so after you get done reading one can you pass it on to another Person With Dementia, or a Coach, or Professional.
If you are a Person With Dementia (PWD) then I’ve got great news for you! There are peer groups ready to share their Lived Experiences in order to enhance this time in your life.

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(( Slide change = Harry’s Lantern))

So, after diagnosis:  2yrs later I discovered the wonderful online peer groups and blogs. Let me introduce the blog from a friend of mine named Harry Urban, diagnosed more than 10yrs ago and he was leading the way on this trail when I arrived. He wrote:

I want to go home, where I belong.  … I don’t belong here and can’t understand why I am here.  These are the thoughts that go through your mind when you suffer from some form of dementia.

…  Your life is being forgotten.

You look around and don’t recognize anybody or where you are.  It doesn’t seem right and you just want to go home. The problem is, … I don’t remember where home is.

I may be at the point of no return.  …  “I want to go home”, but no one can reach into my mind to help me.  I am alone and wandering down this road.  …

Harry’s blog reminds me of my Daddy leading the way:  When Daddy and I were walking in the night he held the lantern out to his side.  That enabled Him to see a bit of the road ahead, and me to see a bit of the trail in between.  This Dementia Trail is full of bumps … and tangles of thistles!!   And thru our writings we can sign-post the dangers as we go, for those following behind.  Coach and on-looker can observe and assist, but we on the dementia trail itself have a unique perspective.  Someday there will be a cure, and we hope the trail will not last long enough to become a well-worn path.  In the meantime we continue to shine the light on our trails by writing, or making video, … or speaking with groups.

A few days later Harry bounced back with this:

Have you ever had the feeling that you helped someone you never met?  …  I shed tears when I am able to help someone that has no one else to turn to.  I call it my work but it is a GIFT given to me by this horrible disease I have called Alzheimer’s.  Alzheimer’s has taken me to the darkest of places and I had to learn how to crawl out or be stuck there for the rest of my life.  It is not just a social commitment or a part time endeavor; this is what I am supposed to do with my life. … Unless you walk the path, you have no idea.

Harry is a motivator for writing in my blog, & was one of the founders for “Dementia Mentors”.


(( Slide change = DM Poster ))

I made this poster for Dementia Mentors, in memory of my two grandmothers who walked the Dementia Path before I did.

“Since I learned from those who went before me & led the way, I do not dread what is to come.

This is not a NEW path, even tho it is unfamiliar to me.

Like those before me, I will travel this path with honor and integrity, lighting the path for those who follow

… until a cure is found.”

The peer group of Dementia Mentors is a primary support for me.  It is not only something I “want” … it is something I need.  After beginning the video chats on Wednesdays and Fridays, I turned to my husband and said, “You know what?  Right now I FEEL normal; really I know that I am not – but I FEEL like I am.  I have so much in common with my friends that during our chats … I AM normal!” Dementia Mentors are one of the resources listed in the PWD Success Stories booklet.

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(( Slide change = Swiss Cheese Symptoms ))

Back to my SWISS-CHEESE symptoms:  My most intact skills are in Research, Relationships, and wRiting.  In contrast, the biggest holes (where symptoms have removed my abilities) are in Reading, ‘Rithmetic, and Remembering.

… My reading comprehension has now dropped from University-level to 4th grade.
… My last job was in Accounting, but now I couldn’t tell you whether 44 was larger than 37.
… And my husband says I often repeat the same question.
I also have a hard time recognizing the way he looks, but I recognize his voice immediately.
I have smell hallucinations, usually of something burning, (which I discovered is a very common smell with my PWD friends) and once in a while I have visual hallucinations –usually bugs. (How fun, huh?)
notice that the remaining skills allow me to maximize sharing of my Lived Experiences.  

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(( Slide change = DAI ))

What else?  Another aspect of life after diagnosis is working on Dementia advocacy.  We take the portions of our cognitive functions that remain and APPLY them to Awareness and Advocacy projects.  Dementia Alliance International (abbreviated DAI) is the formal non-profit organization that I look to for that area of my life and contact information is, again, in the booklet.  It is also written here (pointing to overhead).

I have been forgetting to cross things off as I went, so I have no idea where I am. Ummm — there it is!

… completely by – and for — Persons With Dementia.  We offer video & text support groups, but also it seems like it is geared to help train us as spokespersons to the world.  I am currently in their groupings for Speaker’s Bureau and for Video, but there are several other outreach groups – again by and for the Person With Dementia.  Recently World Health Organization collaborated with DAI on what they called “The Wish Project”, and Alzheimer’s Disease International also agreed to start collaborating with DAI as an independent international group of people living with dementia.

This is an exciting development, and, as the DAI news-flash states, “DAI has worked for almost twelve months towards this, and are very hopeful it is the beginning of significant change towards ensuring the voices of people with dementia are heard. Most importantly, that we are always included in the conversations about us, on the things that impact our lives and futures.”

… Okay … that is a lot to go on – for a Person With Dementia, but what if you are a person without dementia?  What does  this have to do with you?  … or with “Dementia Friendly Community”?
For one thing, request a speaker from the DAI Speaker’s Bureau.
Regularly access the DAI Master Classes,
Webinars, and
Blogs in order to see life from the perspective of Persons With Dementia.

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(( Slide change = PWD Perspective ))

And that is why I started the monthly online newsletter of “PWD Perspectives”; to allow others to see life ‘Thru the Looking Glass’; from life perceptions of my fellow Persons With Dementia (or “PWD”). No revisions, explanations, or printing format is available with the newsletter; it is simply a collection of gathered links from what we write, or video, or artwork of Persons With Dementia; just like a search engine only it is in one place.

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(( Slide change = Art – For purpose of saving blog memory requirements, posted repeat of this picture despite also contains my art in center – actual slide used in speech does not have mine added ))

Artwork above is based on my friends’ symptoms of sensory overload from Fronto-Temporal Dementia, and hallucinations that can occur even in early stages of Lewy Body Dementia  … meanwhile here are a couple more excerpts from other persons:

I myself wrote a piece on Conversation Tips from patient perspective, which many have found helpful and I brought a few copies — over there (pointing to table).

Robert Bowles wrote: “ASAP squared” means …

A … As Soon As Possible;  S … maintain equal … (Oh!  I’m sorry — I skipped.)

A  … find Acceptance of the diagnosis, (That makes a lot more sense!)
S  … maintain equal or greater Social interaction …
A  … develop an Attitude that is positive and focuses on my two mantras, and
P  … find your Purpose in life since your diagnosis.

Robert’s two mantras are
(1) Live life like never before, Live life to the fullest, and
(2) I do not have time to die, I have too much to live for.

Tommy Dunne posted it very concisely: Dementia has taught me that I’m here to do a job.  It’s shown me that I still have a purpose & a duty to fulfill … before time runs out.

You can see significant things are being produced. I think verbal and artistic produce from Lived Experiences of Persons With Dementia ARE able to contribute toward Dementia Friendly Communities.  Despite our “Dementia” label – or maybe BECAUSE of that context, it is very important to value the product from our remaining cognitive abilities.  One of the best ways is to listen to our words – truly LISTEN, not just wait and endure while we are speaking – not just quickly scan what we write.  Instead reflect on our thoughts and art, so that you can APPLY that to your relationships.

Time is up … Thank you very much for LISTENING !


speech took 14.5 minutes

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26 thoughts on “Value for Lived Experience of PWD as Contributor to Dementia Friendly Community

  1. WOW
    It’s so honest and just tells it so vividly
    Wish I was there to hear it from you in person

    Sibs has said he will video everyone’s presentation so hopefully will see you presenting it

    Yes you are ready
    Yes you will speak from the heart
    Yes it will make a difference

    So go on the trip of a life time make memories laughter and enjoy this success

    Hugs and rainbows AGNES


    Liked by 2 people

  2. HI Truthful
    Is it possible to get a copy of your booklet you put together. It sounds wonderful?
    Thanks again for all the work you are doing to help shift our dementia care culture. Best of luck at ADI!

    [cid:image004.png@01D070AD.B79EB8B0] [cid:image003.png@01D070AD.8AA5D000]
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    Lori La Bey, CSA, COS, AOSAD
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    Alzheimer’s Speaks Memory & Alzheimer’s Cafe Mentors

    Liked by 1 person

  3. Once again, Tru, you have spoken with honesty and loving kindness! I wish I was there to hear your presentation. You have touched me in ways that are hard to describe…given me an understanding of the dementia journey and encouraged my compassion meter to elevate beyond what I had before connecting with you.

    Thank you for all your insight and your willingness to share your journey. Blessed wishes to you on the trip and your presentation! Know that you DO make a difference!!


    Liked by 1 person

  4. This sound great. Good luck and enjoy your time in Australia. Every time a person living with the condition called Dementia of what ever type speaks out, someone is educated. One person at a time, one day at a time change will come before the CURE.

    All the best and kind regards


    Liked by 1 person

  5. Brilliant speech but most of all from your own perspective…can’t get more meaningful and powerful then that 😊 I live in Perth but unfortunately can’t go to the seminars ( will see & hear it all I’m sure). Anyway, hope you have a great flight & get to see our city a little. Best wishes & keep happy. Marija

    Liked by 1 person

  6. In the UK watching and reading, your posts mean so much to me, and this presentation really is telling the truth about dementia without too much doom and gloom. I am struggling to come to terms with what is happening to me so hope I can pick up some of your positivity!

    Liked by 1 person

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