1. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    At a recent event I was listening to two people discussing the rights and wrongs as to whether a carer should tell someone that they had Dementia or Alzheimers disease. After a while a lady (writer) spoke up a said, that she did not see any point in trying to explain to some one who had either of these illnesses what there problem was, as they spoke a different language to everyone else and they were incapable of understanding anything.

    I was left so dumb founded that I really thought that I had miss heard this lady. But after being constantly dug in the ribs from both sides by my wife and another lady, who said I should speak out, I found that I was so annoyed that I decided to find this lady later and speak to her. I know that I do not speak a different language and niether to my knowledge does anyone else who has Dementia. However before she finished speaking, she did say that she was thinking of changing her name, and now I think I know why.
    When the event finished I and some others watched for this lady but she seemed to totally disappear into the woodwork and was never seen again over the next two days. She did leave a lot of people behind who were very angry by the fact that she did not stay and explain herself properly

    Best Wishes

  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Ken,

    I can understand how hurtful that was, and how angry it made you feel. You have done so much to publicise AD, and to support people here on TP, it must have been like a slap in the face for you.

    The lady must have been very angry and frustrated about something, to have spoken like that, but she still had no right to denigrate people in that way. I bet she's regretting it now, changing her name might be a sensible option!

    I have to say, though, that in PPA, which is John's form of dementia, the language centre of the brain is destroyed first, so for many years he has had no understanding of the spoken or written word, though he functioned very well without language. But PPA is a rare form of dementia, and I know that most AD sufferers retain their language almost to the end.

  3. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I can well understand you being angry I would have felt the same.
    I hope the lady will not appear again at meetings,she obviously does not have first hand experience of Dementia.
    Rise above it Ken.
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Ken
    and I'd add, no experience of loving someone enough to want to try to understand dementia and its effects.

    It seems to me that there are three issues here:

    1. whether to tell the person they have dementia

    2. whether the person would be able to understand

    3. what would be the effect on the person of knowing

    In my opinion, all the issues are dependent on the circumstances. The first and third are, to my mind, linked closely.

    As in many things there is not necessarily a 'right' answer, it simply depends on the person or people involved and those circumstances.

    The second issue, it seems to me, is totally dependent on the stage at which the person is in their dementia at the time of diagnosis, and how long the process of diagnosis has taken.

    If the diagnostic process has taken many years, then it might seem sensible during that time not to tell someone they might have dementia, because that might not be correct, and it could affect them adversely. By the time a diagnosis is made, it may seem pointless to change what has become "investigation of memory problems" to "dementia".

    Originally I put just the first two points, but I then added the third, because I think it is important, at least to me.

    With all the points however, it seems to me essential to consider every person as an individual and to respect them. It seems that, besides a lack of knowledge, the writer has a total lack of respect, both for people with dementia, and for the responsibilities of writing and speaking about the subject.

    As Norman says
    You are bigger than the writer! :)
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Ken.

    The woman was talking through ignorance.

    She had no idea of the different dementias, different symptoms and stages. She had no idea of individual strengths and coping strategies. She had no idea of the depths of hunman relationships.

    In fact she didn`t know what she was talking about.

    The only comments that would make me angry would be from people I admire and respect. That woman would not be anywhere near that category.
  6. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    Hi Again,

    While it does not bother me now, I was offended by the fact that she implied that everyone was the same.
    She obviously hadn't a clue about the fact that there are many forms of Dementia, all with different symptoms and effects as well as the one that struck me. This was that in many cases people are now starting to be diagnosed early on which is good. This does not happen all the time and I understand that many are in the later stages by the time they are diagnosed.
    But by lumping everyone into the same heading she obviously did not have the faintest idea about Dementia, and has probably not had anyone in her family with it.

    It does prove one thing and that is anyone can write a book without any knowledge of the subject, but sadly it can have the wrong effects on the people who think it is genuine.

    Best Wishes

  7. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Dear Ken ....

    Well done, as always!!!!! Perhaps this lady would like me to introduce her to my mother? Who's language and understanding of her problems is not the same from week-to-week, day-to-day, even hour-by hour........ although I have never directly said the 'A' word to her......

    Mum veers from laughing at herself and her 'memory loss' and mistakes, despairing at her demise, wishing she had anything else but 'Alzheimers', being totally unaware there is anything 'the matter' with her, denying there is anything wrong with her, weeping when she admits to struggling with something, boasting when she has achieved something, telling people exuberantly she has a 'disease' ........

    Even the same person is not always the same!!!!!!

    For me, one of the beauties of TP is seeing trends and possibilities but celebrating, or of course sometimes commiserating, with the 'uniqueness' of all our situations and circumstances ...... and that includes the celebration of the uniqueness of every individual ......

    (Good job I wasn't there, Ken - your ribs may have had even more bruises from 'elbow-digging'!!!!!!!)

    Much love and thanks, Karen, x
  8. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hi Ken

    Oooh, this struck a chord with me! A very close friend of my mum's once said that there was no point in talking to her as she remembered nothing and didn't understand anything. Even now, I feel angry about it. Needless to say he is now no longer close, or a friend.

    Well said, Karen too. Those who suffer from dementia are unique, there are many different characteristics, even within the person (as you so eloquently described your mum ... who sounds more like mine by the day - separated at birth?! :))

    Ken, I hope your ribs are now fully recovered and have been tickled instead! Let's hope this woman doesn't reappear in your orbit too soon, otherwise she might have broken ones!! :D:D
  9. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    Ken that was why the Convention was so good hearing from the people with the condition describing in their own words what it means to them and how they deal with it. Such a difference from the well meaning and in some cases professionals giving their often misguided views!:rolleyes:

    Linda x
  10. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Dear ken,ignorance is bliss for a lot of folk out there.ignorance in my world is not being able to understand the issue,this one being dementia and A/Z.Theres them who want to know and them who don't,and it seems to be that the ones who don't live with this disease are the preachers not teachers.it's a sad sad day when a speaker at a convention for the disease makes these kind of comments,I tell dad every time i see him that he has alzheimers,so he knows that how he feels and how he acts is not his fault.blood boils doesn't it?love elainex
  11. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    Hi All

    Having spoken to a few people since this event, it seems that although the effects of Dementia are taught to social workers and nursing staff, they are not told about the facts that these days people are being diagnosed earlier, and that this raises other issuses, which include that fact that some people with Dementia can in many cases speak.
    I was told by one nurse that people are still not being trained with this in mind, and are still using the old rules.

    So it seems that there training needs to be updated to accommodate this and many other facts. One dear lady said that she was staggered to be at an event where a person with Dementia actually spoke, and she felt that the lady writer in the original post had had had no formal training in this illness.

    Best Wishes

  12. traceyh

    traceyh Registered User

    Dec 27, 2007
    dear ken, i understand what you are saying but, i care for my mum who has vascular dementia and many other medical ailments so im very anxious about anyone telling my mum she has another illness i feel im the one to take the worries when things go wrong . Please understand in life we all need to disagree to agree otherwise life would be boring! take care traceyh (new member)
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Hi tracey and welcome to Talking Point

    We often have discussions on the forum about whether to tell or not tell, and generally, we all feel that this is very much a personal decision and needs to be decided on a case by case basis.

    However Ken's point was that this "speaker" was making an assumption that simply isn't justified by the evidence. Certainly there are people who have dementia who cannot understand or communicate, but obviously there are people like Ken who have dementia but have no difficulty expressing themselves.

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