The Madness of Alzheimer’s Society

This being the season of goodwill, my goodwill message to the Alzheimer’s Society is that it should open a dictionary and learn the meaning of the words ‘support’ and ‘discussion’.  Some of us dealing with dementia in our relatives and friends wonder why nothing changes for the better where dementia is concerned; why progress is so slow; why so many people have to tread the same stony path that others have trodden.  The answer may lie in the Alzheimer’s Society’s online forum.

The AS’s  online forum Talking Point claims to be “an online support and discussion forum, for anyone affected by dementia. It’s a place to ask for advice, share information, join in discussions and feel supported.”

The AS has destroyed the true meaning of those words.   With its dictatorial monitoring, editing and censorship of posts, the AS only allows words to be used if  they match those chosen by the AS.  Anything that doesn’t conform to the AS’s desired point of view is amended, edited or deleted by the AS.  Without discussion.

The Alzheimer’s Society condones strange practices within the administration and moderation of its forum.  It allows the banning and removal of people affected by dementia who have been members of the forum for many years now.  At the start of this year, one much respected member (since March 2006) who had posted almost 5,500 times on the forum has been deleted.  She’d been a member for longer than some of the moderators who have now condoned her removal.  She had been extremely supportive of others, providing much care and help, much respected by other members too.  But zapped by the AS, suddenly.  Without warning.

The reason given?  It was deemed by the AS that she was not posting as the AS wished her to post.  No discussion; no appeal; just zapped.  The Alzheimer’s Society’s word is final.

The AS condoned the removal of words like ‘Winterbourne View’ from every single part of the forum.  The reason given?  It does not allow mention of care providers by name.  The strange AS Administrator who carried out that action failed even to take on board the fact that Winterbourne View is no longer; it is no longer a provider of anything.  It no longer exists. (It’s difficult to argue that Winterbourne View ever was a ‘care’ provider, but that’s another debate.)  The salaried AS employees spent time searching for and deleting all mention.  Same applies to Southern Cross – all mention of that has been deleted too.  Even though Southern Cross no longer exists, and is not a care provider.

Rules is rules.  Common sense has gone out of the window, as far as the Alzheimer’s Society is concerned.  Censorship rules.

The AS condones the editing of posts by its moderators and administrators, even months after they’ve been posted.  It makes one wonder how many other posts have been doctored to suit the AS, without discussion with the original poster, and without appeal to reason.

It is censorship gone mad.  What is the AS so afraid of, that it needs to do this to people who are trying to change the world of dementia care?

One forum member posted recently that they’d only just read the Terms and Conditions for the first time – something referred to constantly whenever a moderator wants to spank a naughty member.  The Terms and Conditions were described, by this member, as ‘draconian’.  They certainly are just that.  The ‘infraction’ system is also draconian and childish, in the extreme.

The membership is not allowed to voice any objection, on the forum, to their post having been edited and/or deleted – or they receive a ‘yellow card’ for doing so.  Then another.  Then a ‘red card’ ….. and so it wends its childish way along the path to destruction of anyone who questions.

The members are required to contact the mods or admins by PM to ask for explanation.  However, often no explanation is given.  The member is then zapped before they can blink.  Their account is deleted, just like their posts may have been.  There is to be no discussion.  The AS word is final.  Unexplained but final.

A member is not allowed to delete their own account.  The figures of true membership would then be very different, but it suits the AS to make it seem as if it has more support for its forum than it has.  In reality, just a handful of regular members use what has now become a chat room.

The same rules don’t apply to the AS chosen moderators though.  They are allowed to post whatever they choose.  No matter how arrogantly rude they may be.   Some are worse than others, especially those that come out after dark.  One AS chosen moderator even posted the precise location where one member lives, with a barb attached to her post, of course.  That surely should have received a ‘red card’ followed by deletion of her membership too.  But no.  She can do whatever she chooses to do, even though the AS knows that she is provoking, inciting, stirring ill-will and uncomfortable feelings all round.

The moderators are immoderate enough to allow certain unfair comments to be made against a member – but only if it suits the moderators’ position, for whatever reason.  They have their favourites who can do no wrong, in their eyes.  They have their chosen victims who can do no right, in their eyes.

If the Alzheimer’s Society wants people affected by dementia to be able to share their experience of dementia in a free society, it must allow people to speak freely.  The moderators should be moderate, and should moderate sensibly, rationally and elegantly.  And with dignity and with compassion.  The current watchwords of dementia.  They should not feel the need to read every single post as it is posted, and then to alter it just to suit themselves.  They should not feel the need to amass a fan club amongst the membership, who are required to express their thanks to the moderators for ‘keeping us safe’.

The Alzheimer’s Society is destroying support for dementia, for its forum and for the Alzheimer’s Society.

The Alzheimer’s Society is consenting to the creation of a whole new generation of Stepford Wives.

Seasonal Greetings to those affected by dementia.  A plea to the Alzheimer’s Society to support them and to allow genuine discussion of the good, the bad and the ugly.

 

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6 Comments

Filed under dementia care

6 responses to “The Madness of Alzheimer’s Society

  1. Edna Fletcher

    The tragedy is that fora like Talking Point are the lifeline often of many of those who become really distressed and desperate in their role as an isolated carer needing to know they are not alone in what is a lonely and hard life. Alzheimer’s Society thrives on the back of this, knowing full well that it can massage its ‘membership’ to still include those who have left in disgust at the draconian nonsense of judgemental moderators hand picked no doubt for their ‘policing’ ability.

    There is a need for a realistic discussion forum where honest experiences of the state system of care / help is exposed for what it is by those who are unfortunate to need its assistance in the 21st century. Moderating such a forum is a challenge to exclude legal liability that can arise when workers are named.

    It is obvious, if AZSOC was worth bothering with, that many people are having similar experiences- so there is no thing as generalisation- when the experience itself is more general than individual.

    But charities are in trouble as their coffers decline… no doubt more mergers in time- could change everything.

    • careintheuk

      I don’t think anyone would disagree with you when you say that the AS needs to protect itself against litigation. Nobody is asking to be allowed to mention the name of their social worker, or the particular care provider/care home they are dealing with.

      The madness of AS censorship and extreme moderating of posts, to remove even such words as ‘Winterbourne View’, extends to that which is already in the public domain. So if a member posts a link, say, to an article/report by the BBC, and uses only the words used in that BBC article, the moderators edit the quote from the original, even when a poster has cited the source and used the exact words.

      By editing the original, the AS is creating more copyright problems than existed in the original post. And irritating its membership in doing so.

      That’s just one example, but also a reason for many people having abandoned the forum.

  2. Edna Fletcher

    I agree entirely with your view of the nonsensical approach by Alz Soc. It is childish behaviour.

    The issue is still that there is a vast need which needs to be filled by someone other than this organisation which clearly does not meet the needs of many using it. Preferably one which has skilled staff able to assess whether a post is seriously likely to lead to litigation. Most posts are not in this category on many websites where comments are allowed, e.g. newspapers. Most often comments are removed because the organisation whose website is involved avoids comments which are offensive, might implicate support for some view by the organisation, or is critical of its the organisation in some way. But only Alz Soc seems to edit posts by contributors for perverse reasons. I am unsure of the legal right to so do without warning the individual of the right to remove the post entirely.

  3. ian cresswell

    Hi Everyone,
    I dont think that the Alz Society should be seen any more as the mouthpiece of information and support for dementia or those families affected by it. The majority of the members are fine; but the administrative side to my mind are tainted. They are not proactively supportive of those members who would oppose the present care system in force or the funding of it.
    They care too much for toeing the line;the line that is too soft with both the Government and NHS policies on dementia and funding.
    They think too much about the support they get financially from Government sources than support and care for those who suffer from dementia.
    Thats the reason why any form of criticism is cracked down right away.
    I have never been impressed with the A.Z Society to be honest. And I have never considered joining it and using its forum; for the very simple reason, with my views on the subject I wouldn’t have lasted a week.
    There is no freedom of speech and while there has to be moderation on any forum, there is a big difference between moderation and repression.
    Very kind regards,
    Ian.

  4. A_care_worker

    A.Z moderators are care home owners some of whom have been investigated for abuse in the past

    • careintheuk

      I have no knowledge of what you are claiming. I believe that one moderator has what I would describe as care home ownership connections but no evidence or even knowledge of any investigations concerning abuse. If what you say is true, it is deeply disturbing.

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