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There is a stigma around Alzheimer’s disease

Discussion in 'Researchers, students and professionals' started by Rigerta, Mar 13, 2015.

  1. Rigerta

    Rigerta Registered User

    Mar 2, 2015
    12
    #1 Rigerta, Mar 13, 2015
    Last edited: Mar 13, 2015
    Do you believe there is a lack of understanding around Alzheimer’s disease?

    Hello everyone,

    THIS POST HAS BEEN REVISED AND CHANGED, I DO APOLOGISE FOR ANY DISCOMFORT OR UPSET IT MAY HAVE CAUSED TO ANYONE.

    I am currently doing research for my university dissertation and i have based this around Alzheimer's Disease, I am aware of the fact that there are hundreds of types of dementia but i have based it on Alzheimer's disease for research purposes.

    From research into the topic there are views that there is a stigma around Alzheimer's disease, there are poll results showing that people seem to have a negative perception, claiming that you are not able to live a fulfilling life because of the diagnosis. This is untrue

    There have been numerous campaigns where the aim has been to teach the public and make them aware of dementia and the ways in which they can help to make the lives of people living with the diagnosis easier, they aim to simplify their lives. If more people understand then more people are willing to go the extra step and help.

    Do you believe there is a lack of understanding around dementia and Alzheimer's disease and how do YOU feel it can be changed?
     
  2. Pon

    Pon Registered User

    Dec 11, 2011
    61
    wales
    There is a stigma around Alzheimer's disease

    I agree, it is simply because the general public are unaware there are certain illnesses that cause dementias and are unaware that alzheimer's is often found in families. We as carers can help by talking about the diagnosis and what the stages are to all who will listen and how the diagnosis and treatments affect whole families. The more the word can be spread the more people will realise that it can happen to them or a member of their family or friends. I do feel it's not as taboo as it was but we have a long way to go
    as there are still people around who think it's a kind of madness and not a disease.I think the big charity donators and the UK/ government need to realise sooner rather than later that finding new treatments will not only help the patients but will save the country billions of pounds. When I was young TB was the killer decease. I suppose because it's human nature that we all think these things will never happen to us that it never gets the priority that it needs
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    It's bad enough without creating problems

    I'm not aware of any " stigma". Everyone hates this disease and nobody wants to have it or be a carer for someone who has it but that is what you would expect. I do not hide my husband's problem but neither do I advertise it. Why would you?

    Don't add to the already difficult illness by creating some other label from the tabloids.
     
  4. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Hi Rigerta :)

    As this is a university dissertation, I am bound to ask.....what do you mean by:

    "people are known to have a negative perception ?? Which people? How do you know? And as Alzheimer's is a disease, why would you expect people to have a positive perception of it?

    "you are not able to live with the diagnosis" ? Again, I am not sure what you mean. When a person is diagnosed, they have little choice but to live with it. The question might be better phrased as something like "How do people live well with the disease?"

    Sorry, but from your brief post it seems to me that you might be starting off on a confused and possibly inaccurate argument. Could you be a bit more specific....or has your wording already been accepted by your supervisor?

    All the best :)

    Lindy xx
     
  5. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,992
    Suffolk
    Why just Alzheimer's? It often occurs In tandem with other types of dementia. There are about 100 diseases under the dementia label. I'm absolutely sure the general public do not differentiate. I agree with other posters who ask how can it be a stigma. You cannot look at a person and say, that persons got Alzheimer's!
    As a veteran of dissertations, I feel you should be taking to your supervisor and actually know what you are talking about. Do you have permission to be on this site?
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
    Perhaps it would help if you took some time to read through some of the threads. You will find a mix of ups and downs and people living as well as they can with dementia. Not all of us have time to answer questions fir dissertations.
     
  7. Acco

    Acco Registered User

    Oct 3, 2011
    228
    Stigma?

    I am unaware of any stigma; there is a lack of understanding of its impact on the person and their carers, and reports stating it is a result of a poor lifestyle do not help achieve a proper understanding in the wider public. I have always been determined that we should go about our lives as we would do under normal circumstances and never had a problem doing whatever and whenever necessary to achieve our aims, and never found anyone who didn't just accept that my wife needed help, much the same as others with different health issues. 'Individuals not able to live with the diagnosis' - in my view a very broad statement which is wide of the mark, and the kind of silly phrase which doesn't help at all.
     
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    I agree with Marion, Lindy and Acco there's not really any stigma. Maybe people don't know how to react when they can see something is obviously wrong with someone and they're not sure what it is but "stigma" no.

    Not too sure about "people are known to have a negative perception claiming you are not able to live with the diagnosis" plenty on here live with AZ or live with someone with AZ" which world is this in? The only negative perception of AZ comes from the State who see us an expensive financial burden, but even they're polite enough not to say it out loud.
    K
     
  9. Rigerta

    Rigerta Registered User

    Mar 2, 2015
    12

    Very sorry if this post has caused any discomfort or upset, i would just like to say that this is not being created or labeled from the tabloids and it is simply a conclusion withdrawn from months and months of research. Unfortunately there is a lot of research suggesting that there is stigma and the numerous ways that it should be tackled, i apologise once again if you feel this is wrong, i am only going by what research shows, otherwise i wouldn't be in this area of the talking point. I also have a family member living with the diagnosis so i do understand

    best of luck with everything
     
  10. Rigerta

    Rigerta Registered User

    Mar 2, 2015
    12
    Maybe i have worded this in the wrong way, thank you for the feedback Lindy and i will revise this and be much more specific. I was excited to get on with the work
    x
     
  11. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    Sorry, but this does not bode well for your dissertation. What do you mean by stigma? Do people shy away from us in the street? No. People keep away if they don't want to be involved but the same would be true if he had cancer or brain surgery or any other horrible illness.

    You need to be quite clear what you mean here and not just hang your work on a cliche. Stigma, snub, agony, trauma or any other melodramatic headline quickie description is just not on here. This is a hellish disease but we need serious, clear headed thinkers open to a real study of what is going on. We're here for the long haul, mores the pity and want you and others to get to grips with what it all means.
     
  12. lexy

    lexy Registered User

    Nov 24, 2013
    563
    Hello Rigerta

    I am not sure I would use the word stigma, I think it is more a case of ignorance and lack of knowledge about dementia.

    I heard some women talking about a person they knew that obviously had dementia, they were using terms like, "gone a bit funny" "ga ga" and laughing. I found it very difficult and offensive, and wanted to give them a piece of my mind and "educate" them about this illness. Unless you have actually cared for a person with dementia 24/7 from start to finish, as I have, I don't think many people have a clue about this illness and what it can do and not only to the sufferer but to the carer aswell.

    If you can read many of the posts on here it should give you some insight into this nightmare that many people are having to face on a daily basis with very little quality help.
     
  13. Rigerta

    Rigerta Registered User

    Mar 2, 2015
    12
    #13 Rigerta, Mar 13, 2015
    Last edited: Mar 13, 2015
    My post came across very differently to what i had planned but thank you for this, it has helped me and i will revise and post this again.
     
  14. Rigerta

    Rigerta Registered User

    Mar 2, 2015
    12
    THANK YOU, this has helped a lot
     
  15. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,289
    SW London
    Yes, there is a lack of understanding, simply because most people - those who have not lived with it - don't have a clue. They are not helped by TV ads trying to portray the typical dementia sufferer as a gentle old soul gradually fading away. Some may be like this - an awful lot are not.

    I think the reason dementia is so rarely portrayed more realistically in the media is that it would just be too frightening for people to take.

    I don't think there is a stigma as such, but people are frightened of getting it, and of their loved ones getting it, and with very good reason.
     
  16. Rigerta

    Rigerta Registered User

    Mar 2, 2015
    12
    thank you
     
  17. Rigerta

    Rigerta Registered User

    Mar 2, 2015
    12
    Thank you, this is appreciated
     
  18. Rigerta

    Rigerta Registered User

    Mar 2, 2015
    12
    I really need to post this again, thank you for kindly pointing this out to me.
    I understand when it comes to the ignorance as i work in a environment of such

    I hope everything is good for you and the best of luck in everything you are currently doing
     
  19. Adcat

    Adcat Registered User

    Jun 15, 2014
    289
    London
    I think there is a stigma. Obviously I can only comment from you my own experience.
    When my mother was diagnosed with terminal lung cancer i couldn't keep the well wishers away, the phone didn't stop ringing and my siblings and family generally rallied around. The hospice movement, McMillan, Maricurie were throwing themselves at me with help.
    Dad was diagnosed 6 months ago. I'm on my own with him. The visitors and well wishers have disappeared. I have seen people cross the road to avoid dad and I. My siblings have distanced themselves, so have the extended family.
    Getting help from social services has been non-existent because dad has over £23500.
     
  20. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    I'm not sure I would categorize that as "stigma": that sound more like fear - fear of how to deal with the person, fear of saying the wrong thing, fear of being embarrassed. And that happens. A lot.

    Stigma (at least as it is defined by the dictionary) involves judgement (in the eye of the beholder) and shame on the part of the stigmatized. It's all about disgrace. And while the way some people treat people with dementia and their carers IS disgraceful, that's more to do with their shortcomings. While I've come across the whole gamut of embarrassment and the rest of it, I've never encountered the "you have this, it's your fault" that stigma implies. I'm not saying it doesn't exist, but I've not seen it.
     
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