Alzheimer’s Society online forum aka Talking Point

I am so uncomfortable with the latest posts on the Alzheimer’s Society’s Talking Point forum that I just cannot walk away today.  Much as I would like to be able to do so.

It is almost unbelievable that the Alzheimer’s Society’s main forum continues to be beyond challenge, alongside its most vocal forum Moderator, the one who is there  24/7  influencing the mindset of people here in the UK –  even though she has not lived here for more than 30 years.

Again, and again, and yet again she stifles and strangles understanding of the situations that people are posting about.  She has not lived in the UK for over 30 years now.  She has never had any dealings with the care home system in the UK. She has never had any dealings with Social Services in the UK.   She has declared that she knows nothing about dementia services in the US, where she has lived for more than 30 years now.

And yet, and yet, and yet, the Alzheimer’s Society in the UK gives her permission to influence thinking here.  Post no. 50 or thereabouts, depending on whether she deletes it by the time this reaches you.  Or it may have been sanitised and/or moved out of public view into the Tea Room.

Her latest attempt to persuade and convince and influence thinking here is that she is now “trying to think of another long term illness like dementia and coming up empty.  The truth is, dementia is unique in its time frame and its effects.”  According to her.

Utter rubbish, and so far from what she calls “the truth”.   However, it may just indicate how ignorant she is of long-term illnesses with far more devastating consequences than dementia.

This has got to stop.

Why does the Alzheimer’s Society allow this to continue? It claims to be “Leading the fight against dementia”.  I am afraid that if the Alzheimer’s Society allows this strangling forum to continue to try to brainwash people, according to moderator  Jenniferpa, it will soon be losing the fight against dementia. And losing support along the way.

She even claims to  know more about our prison system and conditions here in the UK, than most of us do living here, in the UK.  She says that most of us here will have a relative or a neighbour or someone we know who has come to be in prison, here in the UK.  But that’s also been sanitised now, and hidden from public view in what the Alzheimer’s Society calls the “Tea Room”.  If you find your way into the Tea Room you may need more than a cup of PG Tips.

What should be more of a concern for the Alzheimer’s Society is that she does not even know the difference between “NHS Continuing Care” and “NHS Continuing Healthcare”.  A vital difference between the two, and yet the mainly vocal moderator is allowed to pontificate about it all, thereby misleading  people, confusing people, and diverting people away from vital information.

Does the Alzheimer’s Society know the difference between the two?  If not, why should we allow  the Alzheimer’s Society to allow so many people to be misled, misguided and mis-informed?

To use one of her favourite phrases “Could I just point out …” that the Alzheimer’s Society’s Talking Point online forum is not serving its members well.

Advertisements

2 Comments

Filed under Alzheimer's

2 responses to “Alzheimer’s Society online forum aka Talking Point

  1. Edna Fletcher

    I too have had serious concerns about the ‘outpourings’ of the moderator who was for a short time a ‘long distance carer’ living thousands of miles away overseas; no doubt a demanding role compared to the stressed out 24/7 hands on carers offloading on the Alzheimer’s Society Talking Point site. .

  2. lynrr

    I completely agree with you. In my opinion this particular moderator is a chameleon who uses her position as a “moderator’ to be vocal on the world wide web. I’m sure many members of the forum believe her views are the views of the Alzheimer’s Society. This is because she holds court and other moderators rarely challenge her. This is wrong. Only very occasionally does she say she is “wearing her moderator’s hat” – in the main she isn’t wearing it. So why does her avatar stay the same? She comes across as incredibly arrogant and often very unsupportive of posters who are often in a fragile or confused emotional state or they wouldn’t be needing the forum.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s