Abuse of our Alzheimer’s sufferers

[simonmonty]

If this pole achieves nothing else but to just bring awareness to people then that's an extremely good thing. Abuse can and dose happen. People may not be aware that it is happening to their loved one as i found out.

People must be on their guard were their loved one is concerned. I never thought that my mum would ever be a victim of abuse but sadly my mother was and though i fought to stop it. The abusers got away with it because no one would listen.

If they were a child or animal they would be uproar. But because you have a dementia your life your rights seems to be meaningless.

You are still a person a human being with any form of dementia and deserve the same right to be heard and protected from any form of abuse.

There are laws, legislation's and rules to protect vulnerable people but sadly they seem to be of little worth as to many people just turn their backs on the vulnerable people. It seems they are just not important enough.

My mother use to cried out for help when she was first abused. But no one would listen only me. She complained but it fell to death ears. It was just her Alzheimer's people would just say and treat her like she was stupid. That really hurt my mother badly.

I complained but my cries for help fell on death ears too. Hes just a trouble causer and knows nothing about Alzheimer's people would say.

In this world no one seems to care about abuse to people with any form of dementia. People just turn their backs or just hide it away.

 

[Tender Face]

In this world no one seems to care about abuse to people with any form of dementia. People just turn their backs or just hide it away.

Simon ..... you know that’s not true. People – like me – like you – know some things that have gone on – and why we champion these issues and work for change in whatever little way we can .....

Take heart – it’s brushed under the carpet by many because they are not brave enough to face up to reality .... those of us who are, and had it (abuse) hit us in the face, God willing, have the courage to effect change for others.

We can’t turn back the clock on what happened to our own loved ones ... that is part of our grief and acceptance .... but we CAN strive for difference in the future .....I like to think, in their memory – that some good comes out of the madness ...... but sometimes, that needs to be done quietly, with silent hope and courage, beavering away .... ‘smack people in the eyes’ they may recoil rather than support ..... it is too hard for some to deal with things they have never had to experience personally .... or don’t want to face up to, other than theoretical rhetoric.

Stay strong, Simon.

Love, Kaz, x

 

[simonmonty]

beech mount.
I find your assumptions about Martina and her supposed agenda offensive. Martina has never been patronising to anyone.

All Martina has ever done is tried to open discussion and debate amongst us and bring awareness about many things about dementia and given support to people. I have talked to Martina and she seems a well educated and intellectual person who likes to talk about many interesting topics. This forum is an escape for her while she cares for her cousin as i have heard her poor cousin in the back ground.

If you don't like what she has to say don't read them.

 

[JPG1]

Martina,

I write as someone who (foolishly!!) tried to create a poll recently too. I personally don’t see much harm can be done on TP by a simple little poll. I wouldn’t have thought anyone’s likely to take them too seriously – and they may just be seen as a way of ‘getting it off your chest’ for the person who starts the poll. No, they’re not scientific, and they may only be meaningful for the person who creates the poll. The TP software that allows polls to be created is not brilliant either. So a large pinch of salt is needed when looking at the 'results'.

Having said the above, I haven’t voted on your poll. I don’t have an Alzheimer’s sufferer – and never have had an Alzheimer’s sufferer. Vascular dementia, yes, but not Alzheimer’s. And it was when I saw the title of your poll that I began to look further.

So far, 27 people have responded, 15 with experience of abuse, plus 10 with no experience, plus 2 who are unaware one way or the other. There’s something odd, I think, about the way in which the percentages are calculated by this software which immediately throws the whole idea of TP polls into question.

Another reason why I haven’t voted is because of the types of abuse listed.

No mention of racial abuse, gender abuse, discriminatory abuse, medical abuse, sexual abuse, abuse of human rights – and abuse in the form of sub-standard care and the provision of untrained unqualified unsuitable unsupervised staff. That may be what Tender Face was meaning, when mentioning the pre-poll evaluation that has to go on with a real poll/questionnaire. (Or may not be what TF was meaning.)

Speaking again from my own personal experience only – those forms of ‘invisible’ abuse can be far more damaging than forms of visible abuse (e.g. theft of money, or causing bruising by over-zealous handling, to name but two and equally disgraceful forms of 'visible' abuse).

How about corporate abuse? Local Authority abuse? Abuse by the Regulator? All in the form of neglect of their duty of care, which goes far far further than the tangible.

 

[miss cool]

Hi i have just read all the threads on this subject, abuse is abuse , fisicle, mentle, or money, i am so shocked that some people think others are missunderstanding abuse???????? all i can say is god help us all.....miss cool.

 

[Tender Face]

I personally don’t see much harm can be done on TP by a simple little poll.

JPG1 – I think (IMHO) there is a very distinct difference between a poll (as I believed your recent one was) which canvassed ‘opinion’ and ‘information seeking’ polls (which then become data gathering and how valid is the data and its source, never mind the software that can’t add up percentages! Or how the original questions were defined etc etc blah blah) ...

The difference between ‘ What is your opinion of ...?’ and ‘What is your experience of ...?’ is very distinct to me and should be treated with due respect with clear definition ... which is why I have highlighted concerns to the moderating team.

A poll about abuse may well serve a good purpose, and I would personally be very interested in a thread on TP covering abuse and neglect issues ...... but I am still struggling to see how this particular poll is in anyway helping the OP or her friend?

Perhaps it is a ‘Raising awareness and campaigning issue’ ... and those of us who feel passionately about it and feel able to discuss issues around it could find both solace and inspiration from a thread dedicated to issues of abuse not directly pertinent to one individual?

Sorry to distract slightly from your original post, Martina – hope you have found some benefit from responses here to help your friend????

Karen, x

 

[simonmonty]

Yes miss cool abuse is abuse and it comes in many forms but that makes no difference its still abuse and whether you have or have not any form of dementia makes no difference.

People need to be more open about it and not just turn away. I feel so sad and angry that you have experienced it and absolutely furious that like my mum no one would apprehend the abusers and punish them.

Im beginning to think that people treat people of abuse like people treat people with dementia. Its easier to just walk away and ignore peoples plights.

 

[Jancis]

Sorting out the design of the TP poll software

Martina,
So far, 27 people have responded, 15 with experience of abuse, plus 10 with no experience, plus 2 who are unaware one way or the other. There’s something odd, I think, about the way in which the percentages are calculated by this software which immediately throws the whole idea of TP polls into question.

Hi JPG1,
Thank you for raising the issue about the software. I am sure I can help sort out the software in no time at all, just need to know what, exactly, you mean by odd? I have asked a business associate if he would be happy to give free advice on this issue and he has agreed - if it helps the Society.

But only if it will be of help. I am not sure whether the moderators are behind having polls. Hello Moderators what do you think?

I seriously don't think these amateur polls can do any harm - call them Straw Polls if you prefer, but who am I do judge? The small number of respondents is not meaningful to this thread but there is no reason why polls can't become Stickys in another section of the forum to build up on members views? Unless of course there is a better way of gathering views that I am missing?

 

[PostTenebrasLux]

To you all with an opinion about this Poll

The Poll facility on Talking Point offers up to a maximum of 10 response options. Based on that alone, there is a limit to how “scientific” a poll could be.

My take on this is more a traditional “show of hands”. The whole subject area of ABUSE is so complex and detailed that this TP Poll could never come close as a contender of proper research. I am personally comfortable with a broad line response and can only apologise for it being too vague – it hits the spot for my generalised view. SimonMonty recommended a poll, and as thread initiator – and in agreement with him, set it up, using his wording as part of my question.

Jancis, thank you for raising a constructive approach to this hot topic. All points raised seem to be valid but to be effective and correct, your idea of sorting out the software is likely to make a difference. But then again, not all threads are necessarily delicate or controversial subjects are they?!

Martina

 

[PostTenebrasLux]

My apologies for the delay in responding...

Karen,
My friend has found the information on this thread very helpful and also confirming of her own steps. It also helps her – and myself – get a better feel of how hard her journey is, what mere speck she is in the larger world of fighting against ABUSE.

John,
I can only apologise if you feel I insult “some of us”, presuming you include yourself. If my presence is “SO patronising”, ignore me, skip my threads.
I have no need to discuss my hands on experience with my cousin in any greater detail – what I generally express on TP is ample enough. What is wrong with “how well we are doing”? I still find it extraordinary how, in the face of great adversity, mankind is able to find the energy, commitment, devotion, time, effort (and the list is endless) to look out for those who suffer – and some fight for their beliefs. Not everybody indeed has the inclination or strength or is too proud to ask for help. That is why I value so much the fortitude of most (not all) individuals on this particular Forum. The world at large is not such a charming place!

Simon,
One of the hardest aspects I think isn’t not being heard, but being ignored or not believed. Anything/anyone that upsets the routine or invokes extra effort, time or threatens one’s comfort zone…

Thank you for understanding my expression on this thread and in general. In my case for my cousin, the hands-on caring/nursing are straightforward, if not exhausting, consuming and emotionally challenging. I have had very few questions relating to my cousin’s physical care. However, I am very interested, as you have heard, in the emotional/intellectual structure of the care, in this case of “dementia”. We’ll have to continue our conversations soon!

JPG1
As mentioned above re Poll, there is a limit to the topics/questions I could ask, but you are right about your list of abuses. I would appreciate further replies to my original question: “What do you do when Social Services “Best Interest” meetings and the like take little or no consideration of the wishes of the family?” In my friend’s case, the authorities are not really prepared to listen or compromise/share with the family – it seems that the bureaucrats rule with no or little voice of blood relatives who profoundly care and are prepared to work alongside the medical/legal/social system.

Martina

 

[Sandy]

So far, 27 people have responded, 15 with experience of abuse, plus 10 with no experience, plus 2 who are unaware one way or the other. There’s something odd, I think, about the way in which the percentages are calculated by this software which immediately throws the whole idea of TP polls into question.

Well, the maths, as a set of pure calculations, looks fine to me. That is 15/27 as a percent is 55.56%

The problem is that as poll was set up as a multiple choice poll, someone could accidentally vote Yes, No and Unaware. Since at the moment there are 28 votes in those three categories for 27 voters, it looks like one person did tick two boxes in those first three options accidentally.

Also, the way this poll is set up, someone could ignore the first three options and just tick the boxes for type of abuse, assuming that a Yes would be automatically registered.

The way this type of poll should be constructed is to make one poll with just Yes, No and Unsure as the only options and make it single choice only. Then a second poll could be created as a multiple choice poll for those people who do want to indicate abuses that they are personally aware of.

Mixing these two different questions is just a recipe for confusion.

 

[JPG1]

Well, the maths, as a set of pure calculations, looks fine to me. That is 15/27 as a percent is 55.56%

Sandy, I apologise - I must be missing something here, but aren't there now 28 voters?

28 voters: 15 yes; 11 no; 2 unaware.

15/28 = 53.57% rounded
11/28 = 39.29%
02/28 = 7.14%

53.97+39.29+7.14 = 100%

15+11+2 = 28

I must be having a bad maths day!!

 

[Sandy]

Hi JPG,

That would be true if people were forced to only vote for one option, but that's not how Martina set up the poll.

If you look at the bottom of the poll graphic, on the green bar, you will see how many members have voted, and it says 27:



Mystery solved. Answer: Don't mix polling styles.

 

[simonmonty]

OK then lets forget the pole. As Martina has said lets just see it as a show of hands. Its the issue of abuse that really maters and bringing it to the attention of everyone.

The big question really is how do we change peoples attitude to ignoring or not believing people who are abused. How do we get people to take it seriously and deal with it ??????

 

[JPG1]

Mystery solved. Answer: Don't mix polling styles.

Indeed! Mystery solved. Thanks, Sandy. I knew there had to be something I was missing.

So it is possible for someone to vote 'yes' and 'no' on purpose even on a simple poll like the one I tried to create and that DozyDoris managed to create for me, so as to destroy a poll? Would the software/poll set up just accept that?

Interesting!

 

[JPG1]

JPG1
As mentioned above re Poll, there is a limit to the topics/questions I could ask, but you are right about your list of abuses. I would appreciate further replies to my original question: “What do you do when Social Services “Best Interest” meetings and the like take little or no consideration of the wishes of the family?” In my friend’s case, the authorities are not really prepared to listen or compromise/share with the family – it seems that the bureaucrats rule with no or little voice of blood relatives who profoundly care and are prepared to work alongside the medical/legal/social system.

Martina

Martina, to return to your question. I don't know if this will be of any help to your friend, and it is based on my own experience and learning.

The SS have a duty to consult/listen to/share information with attorney(s), deputy(s) or anyone nominated by the 'service user' as being their chosen point of contact. That need not be a family member at all. If nobody has been appointed by the 'service user', the Best Interests meetings should listen to anyone invited to those meetings, and that will not necessarily be all/each/every blood relative. That wouldn't be possible or practical.

But the SS still can appoint a 'decision-maker' and that may be the SW, to make decisions in the best interests of the service user. Reason why: it's possible that there may be valid reasons why a family member may not be seen to be acting/making decisions in the best interest of the service user. But still the SS has to decide. The SS don't always get that decision right.

Distant blood relatives would only be consulted if there were no other closer family or friends able and willing - and seen by the SS as suitable - to be involved in the life of the service user. Blood relatives have no 'automatic' rights - the SS procedures are thicker than blood!

If there are absolutely no 'conceivable' (historic or recent) reasons why the SS should not share with your friend, then your friend has cause to complain further. It's very difficult to comment with more specifics, because we have no way of knowing whether your friend lives hundreds of miles away, whether s/he has ever been involved in the life of the service user, whether the service user has a partner involved. Or even whether the service user has ever said that s/he does not wish your friend to be involved in their life.

In order, I think your friend would need to put a formal complaint in writing to the SW involved; then, if no joy, (or even at the same time) to the SW's Manager and the Director of Social Services for that team/local authority. If no joy, then to the Ombudsman. But the Omb won't even open the envelope (almost) unless all other avenues have been explored. Be warned: it can take months, if not years, for the Omb to make a decision. Even then the Omb will only look to see whether the correct procedures have been followed - the Omb will not reverse a decision made by the SS if the SS have followed the correct procedures to arrive at that decision. So the service user may not be best served by the Omb route.

Does anyone have health and welfare Power of Attorney? If so, the PoA would be the one for your friend to approach, and then the PoA could/should approach (if he/she feels it appropriate) the 'chain of command'. If there's no PoA, family stand in the queue alongside/behind close non-family (e.g. partner).

I'm sure there will be many things I haven't mentioned, and even some of those I have may be seen to be utter "rubbish" by some who have had a different experience. The legal side of it all is beyond me - apart from that which I've learned and read up on as an amateur. So ignore it all if it doesn't suit/fit the situation.

 

[miss cool]

well i am speachless what Martina has started is a good thing but the clever people has made it into something else.

the ABUSE is happening to vunrible people and it must STOP .

as for someone saying about other abuse that is not the subject this is for people with dementure who are one of the most vonrible people who need security.


love miss cool.xxxxxxxx

 

[Sandy]

So it is possible for someone to vote 'yes' and 'no' on purpose even on a simple poll like the one I tried to create and that DozyDoris managed to create for me, so as to destroy a poll? Would the software/poll set up just accept that?

Ummmmm...the devil is really in the detail of how the poll is set up - either as multiple choice or one choice only.

A one choice only poll will only accept one answer for any available choice from a single TP member.

A multiple choice poll will accept answers for any/all choices from a single TP member (up to 10 "Yes's" for a 10 option poll).

The software is only as clever as the people who set up the poll. It assumes that they have thought it through carefully.

People do not usually vote multiple times to confuse things (IMHO). People often make mistakes when filling out web forms, which is why they need to be carefully constructed.

 

[LEEANN4832]

have you tried 'no secrets' thats really helpfull type it in in google let me no how you get on

 

[Sandy]

Can I just suggest that sometimes we on TP forget that we are part of that much bigger organisation - the Alzheimer's Society and they do have various aspects to their work that deal with difficult subjects like abuse:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200167&documentID=422

There is also a Campaigner's Network for people who want to actively campaign on certain issues (I have no first-hand experience of this as TP is my volunteering opportunity of choice):

http://www.alzheimers.org.uk/campaignersnetwork

There is also a 24-page booklet that the Society produces called 'Safeguarding people with dementia: recognising adult abuse' the blurb is "Outlines the potential causes and signs of abuse and advises care workers on what action to take if abuse is suspected." It is aimed primarily at people working in care professionally, but might be of interest to others. It costs £2 and can be ordered through the Publications catalogue:
http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=409

or online via:

http://www.alzheimers.org.uk/site/scripts/retail_product_browse.php?categoryID=-1&productID=102