note that PLwD is abbreviation for Person/Persons LIVING with Dementia.
Have not tried to keep current on each blog listed in my 2015 Website Links. There are just way too many listings for my current symptoms to handle. But that Listing is still available here >> https://truthfulkindness.com/links/
At this time, decision of top recommendations is all my own opinion. So,
Truthful Kindness’ recommended Blogs and Websites by Persons Living with Dementia symptoms is below. (i add “symptoms” to the new “PLwD” abbreviation because there is some disagreement on issue of whether those with Mild Cognitive Impairment should be included in “PLwD” term.) My hope is for this adaptation to minimize claims of sharing inaccurate information.
first-person stories (or projects including interviews, artwork, etc, from first-person perspective)
providing consistent insight to (in order of priority):
+++ . A) suggested symptom strategies,
++ .. .. B) insight for symptoms, and
+ .. .. .. .. C) other concerns,
from first-person perspective of the person experiencing dementia symptoms.
Some entries primarily provide content on what it feels like to live with symptoms and diagnosis, while others may mostly provide strategies for Living beyond diagnosis. Some have both symptoms and strategies. Some are mostly other concerns (such as human rights, research, funding, etc).
Frequency of updates is not top priority … but is a strong consideration for this page of recommendations.
These recommendations include only www websites. Have not included FaceBook pages as blogs, due to spam problems. Additionally, due to conflict with newly-disclosed FaceBook procedures, a growing number of my friends will no longer visit anything related to FaceBook, so i suspect PLwD are not the only persons trending this.
- Harry Urban (updates almost daily with his own Alz thoughts). Maximally dementia-friendly – with only one-click, altho no Links for specific days & no Link to “follow” blog. Living with Alz more than 10yrs -in USA >> http://mythoughtsondementia.com/blog.html
- Silverfox (USA updates at least once weekly, w/his own LBD thoughts) >> http://parkblog-silverfox.blogspot.com/
- Peter Berry video blog (updates weekly in UK, w/Alz) >> https://www.youtube.com/channel/UCMZ2Z51ATdWO83s8VoEvMcw
- Truthful Kindness (myself – USA updates weekly w/my thoughts or other PLwD) >> https://truthfulkindness.com
- George Rook (in England, writes couple times a mo) >> https://georgerook51.wordpress.com/
- Greg O’Brien (USA journalist w/Alz, but hasn’t written in 2018) >> https://www.huffingtonpost.com/author/greg-obrien
- David Hilfiker (retired USA physician w/MCI) >> https://www.agingcare.com/Blogger/David-Hilfiker
- George Huba PhD (writes at least monthly, FTD in USA) >> https://hubaisms.com/?s=dementia
- Cindy Odell (FTD in USA, writes weekly) >> http://ftdnoflowers.blogspot.com/
- DAI (international, updates monthly) >> https://www.dementiaallianceinternational.org/blog/
- Kate Swaffer (SA Australian of the Yr 2017, writes daily) >> https://kateswaffer.com/daily-blog/
- Gill Taylor (Alz in UK, writes almost monthly) >> https://handbagwarrior.com/
- Laurie Scherrer (writes several times a yr, FTD & Alz in USA) >> https://dementiadaze.com/blogs/
- Robert Bowles (writes several times a yr, LBD in USA) >> https://www.lbdlivingbeyonddiagnosis.com/blog.html
- Tracey Lind (USA updates couple times a mo, w/FTD?) >> https://www.traceylind.com/
- Wendy Mitchell (was w/British NHS, now advocate w/Alz) >> https://whichmeamitoday.wordpress.com/blog/
- Mark Timmons (FTD in US shares photos & thoughts) >> https://havendowneast.wordpress.com/
Other top PLwD websites, personal & collective :
Jennifer Bute (retired MD w/LBD, in UK) >> www.gloriousopportunity.org
Christine Bryden (in UK) >> http://www.christinebryden.com
Dementia Mentors’ video section >> https://www.dementiamentors.org/videos.html
Dementia Mentors’ website >> https://www.dementiamentors.org/
Blogs/websites from non-PLwD who I know value PLwD input (but my focus is PLwD, so do not spend much time evaluating alternatives):
Gary LeBlanc started and funds “Dementia Mentors” >> http://www.commonsensecaregiving.com/
Lori LaBey sponsors bi-monthly “Dementia Chats” >> https://alzheimersspeaks.wordpress.com/
Brenda Avadian has monthly highlight on “Voices with Dementia” at >> http://thecaregiversvoice.com
Deborah Shouse highlights perspective of persons living with dementia at >> http://www.dementiajourney.org/blog/
Groups exclusively for PLwD (Closed groups but may request addition):
Dementia Mentors >> https://www.dementiamentors.org/ … has zoom chats almost every day and also offers individual “mentor” chats. Focus on anyone with dementia symptoms staying active and social, with or without standard clinical “dementia” diagnosis.
DAI (Dementia Alliance International) >> https://www.dementiaallianceinternational.org/ has structured “support group” zoom chats, … and group focus on changing stigma along with human rights and representation of those living with a clinical “dementia” diagnosis.
Sandra has FaceBook group “Living Healthy with Early Onset Dementia”.
Kerry has FaceBook group “Just for people with Early Onset Alzheimer’s Disease”.
… and only few members here, but i think this group was started by a physical therapist exclusively for PLwD at “The Loved Ones: a Place for People with Dementia & Alzheimer’s”
*** DAA (Dementia Action Alliance) in USA >> https://daanow.org/ and UK >> https://www.dementiaaction.org.uk/ have zoom chats exclusively for PLwD. The group itself is not exclusive to PLwD, but they have sharing first-person perspective of PLwD as high priority.
Huge selection of FaceBook Groups for PLwD mixed with Care-Partners & professionals, but these are my top choices:
Harry has Forget Me Not (umbrella for several groups for specific types of dementia)
Myrna has Dementia Middle Stages
Curry has Journey with Lewy Body Dementia
Norman McNamara has Purple Angel (umbrella for several groups)
Rick has Memory People
PS: Dementia Symptom Perspectives also has a FaceBook page; project of myself and a few other PLwD. This is a one-stop educational page, sharing projects from first-person perspective of PLwD (persons Living with Dementia) most every day (same criteria as above). >> https://www.facebook.com/dementia.symptom.perspectives . UPDATE: No longer have abilities to keep Dementia Symptom Perspectives page.
UPDATE: i WAS posting monthly calendar of events with PLwD group zoom chats, but i am losing these abilities and did not see it being used much, so discontinued after 6 months.
Explanatory page for Alzheimers-type of Dementia is here >> https://www.healthline.com/health/alzheimers-disease
Explanatory page for Lewy Body Dementia is here >> https://www.lbda.org/learn_about_lbd
Explanatory page for Vascular Dementia at >> https://www.healthline.com/health/dementia/vascular-dementia
Explanatory page for Fronto-Temporal Dementia is here >> http://www.theaftd.org/life-with-ftd/newly-diagnosed
Explanatory page for varieties of FTD (including PPA) at >> https://www.nia.nih.gov/health/types-frontotemporal-disorders
Explanatory page for PCA at >> http://www.brain.northwestern.edu/dementia/otherdementia/pca.html
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