Online Dementia Communities

PrplAngel Experts
Tru here.  AVAILABILITY of online dementia Communities:  Dementia Alliance International (DAI) sponsors several online video “support” groups, each with no more than ten members.  My group gathers on Mondays.  DAI also sponsors video group “Café Le Brain” online Memory Café, which I attended today (Tuesday).  Dementia Mentors (DM) has the video group Memory Café Wednesdays, Forget-Me-Not has one Thursdays, and Dementia Mentors (DM) has other Memory Café groups on Fridays and Mondays.  If I desire, each one of those organizations also has a text-based group that is available 24/7, in which many of us participate regularly.  All the video groups and two of the three text groups are made up of primarily Persons With Dementia in the early stages.

Many Persons With Dementia have Early-Stage groups with whom they can meet physically.  Considering that I chose to quit driving that would be a problem for me.  Also, I live 2.5 hours drive from the nearest group, which makes the option rather impractical and expensive in time, gas, and fatigue.  These online groups are free if I have a webcam (which are available as low as $10 from Amazon).

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

Dementia Alliance International (DAI) has monthly “A Meeting of the Mind” webinars on topics of interest to people with dementia (and we also say “and others facing the challenges of dementia in their own way” to be inclusive to caregivers and professionals). The next webinar will be September 23 and the topic is: Dispelling the Myths of Dementia. The panel will all be people with dementia.

During September, World Dementia Awareness Month, DAI will be holding weekly “Master Classes” as part of our new DAI University initiative.  These classes will be for people with dementia, and taught by people with dementia.  The classes are as follows:
Sept 3: I’ve just been diagnosed. What’s next?
Sept 10: My conversation with my doctor
Sept 17: Advocacy and speaking out
Sept 24: My conversation with my family

BENEFITS of online dementia Communities:  DAI text group has 76 members, not all of whom are active.  Virtual Memory Café thru Dementia Mentors has 39 members but there are seldom more than a dozen or so in the video meetings, and Forget-Me-Not (with many care-partners) has 1700, but again only about a dozen in video meetings.  Consequently, despite my dementia, I have a wide-based peer group with which to interact.  Because of this I feel much more “normal” than I have in past years, lowering my stress level and thus also lowering my care-partner’s.  Additionally, the pool of knowledge available in these groups is quite substantial, with several types of dementia and a wide variety of occupations represented.  We discuss symptoms and work-arounds easily and consistently.  The opportunities for mentoring and discussing advocacy issues is tremendous and energizing.  All in all, these groups have made a big difference in my life, and that difference is beneficial.

I encourage patient contact to Dementia Alliance International which can be found at [[www.dementiaallianceinternational.org]] and Dementia Mentors is at [[www.dementiamentors.com]].
Patients as well as care-partners are welcome at FaceBook groups Forget Me Not at [[www.facebook.com/pages/Dementia-Support-Forget-Me-Not/1487407131472045]] and Dementia Aware at [[www.facebook.com/groups/250325295027020/]] are available, along with several groups for specific types of dementia.  There is also a written forum available at [[www.alzconnected.org]].  Links for PWD blogs are at top of page, in pull-down menu under “About and Links” title

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