Dementia Symptom Perspectives

Dementia Symptom Perspectives is a very PUBLIC page, now on FaceBook at https://www.facebook.com/dementia.symptom.perspectives .
It is designed to share first-person perspective of those with dementia … to those with whom that perspective might be helpful.

This page is open to alternative viewpoints, but they must be respectful. Comments from both Persons With Dementia symptoms and those without symptoms are welcomed only IF shared with respect and compassion. If we cannot build each other up, at least we will NOT tear each other down.

This page was begun by Truthful Kindness, but is now cooperative effort by several persons who have dementia symptoms. It is exclusively for writing, art, hobby, and other projects by persons with dementia symptoms (including those with diagnosis of Mild Cognitive Impairment as well as standard “dementia” diagnosis like Alzheimers, Lewy Body Dementia, Fronto-Temporal Dementia, Vascular Dementia and almost 100 lesser-known types of dementia). It may occasionally have entries with where spiritual or political aspects of life interact with the dementia aspects of life, but this is not ABOUT either of those aspects. No proselytizing of any type (political, spiritual or otherwise) will be permitted.

I no longer have abilities needed to issue the Perspectives newsletter, but I continue to use this page as a set-up tool for my matrix on PWD (Persons with Dementia) projects.  Gathered 3,500 PLwD Links since 2014; art/crafts, audio, vid, and writing. Each has valuable 1st-person info.
Someday PLwD first-person thoughts/feelings will be discovered as valuable input4all in relationship w/PLwD

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CRITERIA

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CONTENT: I think almost ANY of these projects (written or otherwise) can be helpful to fellow persons with dementia symptoms, because it shows us different possibilities of projects that we ourselves might be able to enjoy attempting during the progressing stages of dementia, allowing us to document our wishes for the future (and/or begin collecting tools and supplies for various projects). At the same time, those same projects can show OTHERS (family, professionals, etc) that the person is still there. Yes they have changed … but every person changes.
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I would like to include as many persons with dementia as possible in Dementia Symptom Perspectives, because I think it can be an encouragement to continue attempting projects.  So i try to share one project every day.
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“STORY” may be video, audio, or written, but must be completely composed by the person with dementia symptoms.
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“PROJECT” can be written, video, or photo account of project with Person Living with Dementia.  One project this month is developing their Power of Attorney and another is a book finished and for sale.  Can be a compilation from several persons (such as a choral video project), interview, or arts/crafts/hobby, etc.
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First priority is to those recent entries which are helpful to fellow persons with dementia symptoms:
1) Suggestions for Person Living with Dementia;
2) Better understanding of symptoms and experiences;
3) Simple acknowledgement that we are not ALONE in experiences;
4) Variety of projects available.
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Second priority is to recent entries which are helpful to those in association/relationship with those persons, such as family, professionals, etc:
1) Suggestions for person WITHOUT dementia symptoms;
2) Better understanding of symptoms and experiences;
3) See Person Living with Dementia as still “there” – not becoming of lesser value.
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FaceBook:

Tru here.
25 Mar 2016 IMPORTANT Note for Dementia Symptom Perspectives:
… I prefer not to duplicate other pages or groups who are already very good at what they do. These are suggested OTHER Groups:
1. Page/Dementia Info: Unless containing a personal interview project with Persons With Dementia symptoms, this page will not have “news” or other items like that. For that I highly suggest Chris Roberts’ page of “Dementia Information”.
2. Support Groups/vid/PWD+: For video-chat support groups to those persons with dementia symptoms (again including MCI) I suggest ” Dementia Mentors “. I believe that at least one of Dementia Alliance International’s video-chat support groups also includes those with MCI diagnosis.
3. Support Groups/txt/PWD+: Text support groups for those persons with dementia (including MCI) are available from Dementia Mentors, and “Living Healthy with Early Onset”, along with “Early-Stage Alzheimers” by PWD John Sandblom.
4. Support Groups/vid/ mixed: For video-chat support groups including both PWD and support/assistance persons there are both Harry Urban’s Friday “Forget-Me-Not Memory Café” and “Dementia Mentors’ Thursday night Memory Café.
5. Support Groups/txt/ mixed: For support groups including both PWD and support/assistance persons there are many groups within Harry Urban’s “Forget-Me-Not” umbrella of groups (including separate groups for some of the standard dementia types like Lewy Body and Vascular and even separate hobby groups). There is also a group begun by PWD Rick Phelps called “Memory People”, Karen Francis has “Caregiver Comfy Chair” and Sheryl Whitman suggested “Ask Those Diagnosed with FTD”. Norm Mac started “Dementia Aware”.,and others.
6. Advocacy Groups: For PWD advocacy issues suggest Dementia Alliance International” (but Dx of MCI is not currently included in membership) and Dementia Action Alliance (DAA for USA is at www.daanow.org ). Generalized dementia advocacy issues suggest PWD Norm Mac’s ” The Purple Angel”.
7. Collaboration Group: Again, in USA, i suggest Dementia Action Alliance for that. Several other nations have DAA group with much the same goals.
Yes, my full legal name REALLY is Truthful Loving Kindness. My personal FaceBook page is found under the name “Truthful Kindness” and you can find more about me at www (dot) truthfulkindness (dot) com … under the “About Me” tab.

8. Art Group: Adding to Dementia FaceBook opportunities, Toby Heyworth and Kelly Wood have started a new “private” FaceBook group named “… Dementia Talent”. If someone has dementia and would like to be part of this group then let me know.
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(This “About Dementia Symptom Perspectives” will also be posted as a pinned entry on the page itself.)  https://www.facebook.com/dementia.symptom.perspectives .

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. Copyright 11 Oct 2018 by Truthful L. Kindness.  Tags are: dementia, Dementia Symptom Perspectives, Persons Living with Dementia, PLwD, PWD.

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