PWD Leadership in My Own Life During 2014

Tru here.

What does a leader of PWD (Persons With Dementia) look like? Collins dictionary says a “Leader” is the first person on the climbing rope. It is the first animal in the team, or the first section of blank film or tape into the projector or machine. Vocabulary dot com says it is the person in charge who convinces other people to follow. Noun of “leader” is the one or thing who is executing verb “to lead”. I think that the most effective leader will lead by example. He or she is the one I see in front, with other folks following. The leader will guide others on a specific path, instilling the leader’s vision in those others who travel on toward that same goal. “Leader” = one who leads; is first on path. Can’t lead from a different path; that is “coaching”. So leader of PWD is exclusively another PWD.

Harry Urban

In my personal path as person living well with dementia symptoms, the leaders I first followed were my maternal grandmothers; remembering their symptoms and how they handled those symptoms. Then I was introduced to Harry Urban and his participation in project of “Dementia Mentors”. As the name implies, this project is by nature a leadership project, using internet as transportation to lead other PWD (Persons With Dementia) in the path of living well with their dementia. What an inspiration Harry is! He leads by example and was a founding member for this wonderful project of teaching other PWD to also become leaders-by-example.


Effective a few months ago, Harry is no longer involved with the “Dementia Mentors” project, but the project continues (Link at bottom of page). With the assistance of a few non-patients (Gary, Michael and Delores) who provide needed continuity during the natural turnover inherent with dementia patients, multiple Persons With Dementia (PWD) have banded informally together to lead by example as Dementia Mentors.

Robert & Judy Bowles

Susan Suchan & myself

The two who most inspired me in my recent journey are retired pharmacist Robert Bowles (with Lewy Body Dementia) and retired RN, Susan Suchan (with primary progressive aphasia, which is a form of Fronto-Temporal Dementia). These are the ones I constantly rely on as fellow-leaders on the path with me. We chat in both text and visual visits thru a webcam; casual get-togethers of friends visiting friends at their homes. I talk with them from my living room while I see them talking to me from their living rooms (or sometimes Susan takes us outside on her laptop while she is talking). At times, Susan is even dressed in her bathrobe as she uplifts the lot of us with laughter in her halted, slow-tempo speech. This makes us all feel comfortable to join in, no matter what we happen to be wearing; we don’t need to be “dressed up” or have our make up on in order to join the conversation. I mostly join in on Thursday nights, but there are gatherings most every day of the week, and we can make arrangements for any time of day. Thursday nights can include other family members. Other nights are PWD-only (except for one non-patient available for technical assistance) in order to provide the security of privacy for patient discussion.

In addition to multiple Memory Café groups during the week, Dementia Mentors has weekly short and empowering recorded videos (I personally have made two of them) instructing how to rule your disease. These recorded videos are also excellent for persons other than patient, in order to understand the dementia patient’s perspective. One-on-one mentoring for newly diagnosed patient is also offered through confidential video chat.

Dementia Mentors has no formal organizational structure, which provides maximum freedom in participation. Only a few rules exist, such as “no medical advice is given”. Our methods of living well are not identical because each person is different. We all have different motivations, with differing skill sets and talents. For each of us those abilities are largely progressively declining, so we are constantly requiring new compensatory techniques and tools. I am messenger; I mostly use written words and my mission is to spread the perspective of Persons With Dementia (PWD) to teacher, dementia coach, author, researcher and doctor. I believe this PWD Perspective can be very useful in the execution of their daily tasks.

Lauren U uses art to share her experience of living life with Lewy Body Dementia. Gord Settle uses photography. We have several retired doctors including David Kramer, who shares his life from a FaceBook page called “Living Well with Alzheimers”, and Jennifer Bute who spreads the message using videos and pamphlets from her website “Glorious Opportunity” dot org. Barry was a gourmet baker, and lives in Indonesia. Ann is in Scotland. Chris is in Wales. I live in America. We are about 50 members and come from all walks of life and all parts of the world.

Those in Dementia Mentors are not the only Persons With Dementia (PWD) inspiring other PWD to live well; far from it! It is simply the only group I know of who specializes in bringing each person on the dementia path into the position of being a leader for other PWD. As such, these people are the leaders of the leaders.

Dementia Mentors is not the only internet PWD project I am involved in; Dementia Alliance International dot org (DAI) is a not-for-profit structured organization designed by, and for, Persons With Dementia (PWD). In my perception, DAI has outward focus more than as project to provide leadership for other PWD; specifically-defined PWD support groups are provided, but I see their organizational goals as much larger than that. They are not training leaders for PWD (Persons With Dementia), but inspiring PWD as spokespersons to the world. Theirs is another story. 2014-12/05 from 1am – 5am.

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5 thoughts on “PWD Leadership in My Own Life During 2014

  1. Thank you, once again, for inspiring me concerning “leaders” through the valley of dementia. It is through being of service to each other on our own personal journeys that we grow and learn. We all are leaders at one time or another by sharing our experiences. Being receptive to things that are brought into the light allows us to be our authentic self without judging ourselves or others…and isn’t that what we are all striving to get to? Thank you, Truthful, for your words of wisdom!

    Liked by 1 person

  2. Pingback: Is “Best Of” Person With Dementia (PWD) GONE ? | Truthful Loving Kindness

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