Thread Status:
Not open for further replies.
  1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

PC terminology-Will TP entries have to comply to this terminalogy?

Discussion in 'Dementia-related news and campaigns' started by PalSal, Sep 17, 2018.

  1. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,108
    Toronto, Canada
    This is where our individuality shows up. I personally am not enthralled with some of these terms - Bullet 2, 3, 4, and 5. Honestly I'm not that keen on 1 either. But it is all through my personal point of view.

    My mother had Alzheimer's but I never thought of her as a victim or sufferer. The early years were particularly tumultuous, as older members who knew me then can remember. I didn't think of myself as a victim either. To me, using those words is a distancing mechanism.

    I do NOT like the terms senile or pre-senile at all. Demented doesn't bother me though.

    Away with the fairies or not all there is simply ignorant and glib, in my opinion.

    Burden - yes, I had some very hard times with Mum. Was she a burden? There were times when the circumstances were a burden and events were quite frankly horrible but the word 'burden' to describe Mum was not right.

    Hopeless and tragic are fair descriptions at times but I don't like them. I think these words make it easy for some to look the other way.

    So I think it's okay if a person wants to use these terms to describe their loved one. I don't and didn't want to do that. Again, it comes down to a personal point of view.
     
  2. PalSal

    PalSal Registered User

    @Whisperer
     
  3. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,781
    Salford
    I agree with the AZ society, none of the words or phrases are really acceptable, they're all a bit either dismissive or old fashioned and probably best left in the past.
    My wife has dementia but I'd never say she was demented, nor would I ever say she was a burden, hard work, challenging but never a burden, looking after a child can be hard work and challenging but has anyone ever called having a child a burden, do that and social services will take them off you.
    I don't see what the AZ society are asking for is being "PC" and al those 2 letters imply, we have to move with the times and some of the older terminology may not now be appropriate.
    If anyone on here says they don't like the "burden of looking after their demented mum, she's away with the fairies, it's tragic" then they're free to do so, the AZ society is addressing their comments to the press and media, however, using a phrase like that on here just wouldn't be acceptable to the members of the site and I'm sure they'd say so, so why is it OK for the media to use these terms?
    K
     
  4. PalSal

    PalSal Registered User

    #64 PalSal, Sep 18, 2018
    Last edited: Sep 18, 2018
    @Canadian Joanne
    I completely agree with you, the disease manifests differently in each individual. I used to get upset when people would say to me "OH, my mother has Alzheimers she is 90" or whatever. My husband was in his 40s. I struggled with the comparison at the time, but I now know that everyone suffers when a loved one is diminished by disease, this is painful no matter what their age.
    I once met a professor from Duke University at a symposium who helped me by saying that the more people refer to dementias as Alzheimers there will be more money for Alzheimers research to help my children when and if the time comes for my children. ( I hope he is right)
    My husband started recognising cognitive difficulties in his late thirties while doing an MBA at the London School of Business. A super intelligent man, we discussed the difficulties of going back to do at course in one's late thirties and dismissed his fears. Things just get more difficult...right?? He started using advance technologies early on, like light bar code readers to pay as home bills and invoices, as he could not remember series of numbers and became confused by them. But as he was the highest of tech brains (in the Silicon Valley doing early work on global corporate private networks via internet) he could mask his deficiencies with technology and his extreme intelligence. (The last seven years or so he is no longer able to use the TV remote or a telephone) But in 2002, he lost his position as an executive for a large global corporation....because he was no longer able to make strategic and executive decisons. We still did not think Alzheimers...we had no idea that people so young were afflicted with the disease, we were uninformed. It took another few years for him to be diagnosed. This gap between diagnosis and being made redundant meant that he could not claim any disability from his corporation. This was a burden for our family. Massive financial changes and lifestyle. Our youngest was 11 years old and we had three other children all studying at university at the time. I was forced to take over our finances to discover unpaid tax obligations and mismanagement on the homefront. I sold our home. My husband was not a burden, the situation created by his "living with undiagnosed" Alzheimers was the burden, which has been shouldered by me, and our beautiful children.
    Happily, because my husband was very bright, and had made some good plans, we have survived. I am solvent at the moment, but like others on TP have shared, I will work hard to keep him at home not only because it is where he wants to be here with me, but because it is necessary to postpone institutional living as long as possible from an economic perspective.
    All the children were educated, at university level (2 doctors, a successful entrepreneur, the youngest is into the ARTS.) My husband has been present for two marriages and the birth of 4 grandchildren and a 5th due in November.
    I have managed but it was a terrible shock and I was unprepared for the entire burdensome obligations I faced.
    Thank God I had excellent advice from a dear physician friend at the Memory Clinic...and the wonderful support and kindness I have received from Talking Point. My friend advised me, to stay 2 steps ahead of my requirements for my husband's care. I now have a team of four people, who help me, three paid and one volunteer. I continued to work full time until I retired completely in Dec 2017. I also discovered to have CML in 2015, which has luckily been managed, but this summer my disease was active again and only in the last two weeks going back in to controlable blood readings. So, I know what it is like to live with cancer (I have cml chronic myeloid leukemia) and it is much easier than dealing with the slow drip, drip, drip Alzheimer's and loss of my friend, husband, lover and father of my children. This disease is tragic, robs families of vital members and burdens the carers with responsibilities and great saddness and resentments against institutions, organizations and individuals who want to remain removed from the reality of the what is happening or simply cannot respond to suffering we experience.
    But in spite of this, I have chosen to live one day at a time and I try my best to find moments of joy in everyday. I am grateful to the fearless and honest physicians we encountered who were clear from the beginning and told us what we would be in store for and we have done our very best to deal with the information. There is no sense in trying to deny the truth, we all know that currently there is no cure and that the decline in the later stages is horrific. There is great suffering and ANGER... but for me that has lessoned with time. Acceptance is the only way to function at all. No mincing words please.
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    @Kevinl - I do so agree with everything you said. Thank you.
     
  6. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    673
    'PC' seems to be used as a bogey man - used by those who oppose 'modern' terminology. I don't object to being 'told what to say'. The first people who taught me what to say were my mother and my grandmother - the priest was Father, the nuns were Sister and other adults were Aunt and Uncle. I would never have been allowed to use the "wrong' words for those with Down's or black neighbours.
    This forum is used by those with a dementia diagnosis. Who would choose to upset them with words such as 'burden' or 'suffering'?
     
  7. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    You make me pale in comparison.
    An amazing and inspiring yet distressing post. I can’t put into words what your post has done to me... I wish I could explain better how you have made me feel, but I don’t know you but I’m so proud of you.
    Thank you for this post. B x
     
  8. Jancis

    Jancis Registered User

    Jun 30, 2010
    2,567
    Hampshire
    This is such an interesting debate. I have learned so much from reading.

    Returning to the original poster's concerns about language usage and whether it is correct or not, I would like to ask - does anyone have a problem with the core term dementia? It's probably too late now but I really have a huge issue with the 'D' word. From my observation it seems that it is more acceptable to say "My relative has Alzheimer's [disease]" than it is to say "My relative has Dementia". Do you agree?

    If a person does not have a clear diagnosis of the cause of their dementia then I think we should refer to their illness as a neurological disorder or cognitive disorder or other term that does not contain the word dementia. The word 'Dementia' (from Latin demens = without mind) is entrenched in the mythological past. That's just my opinion but I have expressed it here before and not many members seem to agree that we should scrap the word Dementia.

    And while I'm on my soapbox, I hate the abbreviations such as PWD = Person with Dementia and there are many others too. Goodness me, who needs those kinds of labels to define our loved ones who are suffering. Yes, of course, they suffer. Can they live well despite suffering? It may be possible for some but not all.
     
  9. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    OK guys. This morning, BBC website headline


    JELLY TREATS FOR DEMENTIA SUFFERERS

    How's that for demeaning language???? Kindred.
     
  10. SerenaS

    SerenaS Administrator
    Staff Member

    Apr 7, 2011
    13,250
    London
    Hi everyone,

    I’m Serena and I manage Talking Point. This online community is one of many services managed by Alzheimer’s Society.

    I’ve been following this discussion with interest and thought it would be helpful to share some information with you all.


    Dementia friendly media and broadcast guide

    When the discussion was started, @PalSal asked a question about how the new dementia-friendly media and broadcast guide came about. Just to clarify, this guide is aimed at media, but also arts and popular culture, including drama, documentaries, film and theatre.

    Alzheimer’s Society asked people with dementia, people who support them and their families to share experiences about how dementia is discussed in the media. This was done in discussion groups and also via a survey on this topic. We also consulted with a number of journalists, scriptwriters and broadcast outlets. This feedback was used to help produce the guide which aims to ensure that dementia is described and portrayed accurately.

    You can read more about this on this Alzheimer’s Society blog: https://blog.alzheimers.org.uk/dementia-insight/positive-language-media-guide/


    Language and dementia

    Alzheimer’s Society is working hard to combat the stigma that is associated with dementia and to encourage people to talk about dementia more openly.

    We’ve listened to a lot of people with dementia and those who care for them, and they’ve shared a lot of experiences about how dementia is discussed and how it makes them feel.

    As a response to this, we created a guide on positive language and dementia.

    A key part of the guide is to support open and honest conversations about dementia, which discuss the realities of dementia and also avoid stereotyping every person with dementia or reducing everyone with dementia to a label.

    The use of ‘sufferer’ to describe someone living with dementia is something that many people with dementia find difficult. Of course, a person with dementia may identify and describe themselves as a sufferer or suffering with the condition, and that is their right to do so. It is also important to recognise the suffering and difficulties that carers face, especially when their voices are often hidden in society.

    The issue comes when all people with dementia are labelled in the same way. As one person with dementia told us, ‘some days I am suffering but that doesn’t mean that all I am is a sufferer and nothing more’.



    How dementia is discussed on Talking Point

    In 2003, Talking Point was launched by Alzheimer’s Society in order for people with dementia, carers and families to have somewhere to talk about dementia online.

    Sometimes people can live well with dementia, and sometimes that isn’t the reality. Dementia can be challenging and difficult to live with. That is one of the reasons why Alzheimer’s Society has services like our National Dementia Helpline and Talking Point, and information covering all stages of dementia.

    Talking Point members freely discuss all aspects of dementia - good days and bad days. This includes memory concerns, getting a diagnosis, staying active, involving professionals, arranging care and support, handling challenges, sharing practical tips, coping with emotions, legal and financial issues, medical issues, stories in the media, and discussing grief and loss.

    Members are encouraged to choose an anonymous username in order to protect privacy and enable them to share their honest feelings and experiences. We also ask that members follow our rules and guidelines, which are in place to keep the community running smoothly. This includes asking members not to use language which is obscene, inflammatory (designed to provoke people) or is hateful or abusive.

    Talking Point is for people with a personal connection to dementia. This means discussions can be seen by people living with dementia. We know that most members are mindful of this and will share their honest feelings in a way which also respects the dignity of people with dementia.

    We hope that it never feels like Alzheimer’s Society is trying to censor your experiences. We certainly don’t intend to do that. Talking Point is here so that you can talk about all aspects of dementia.

    If you have questions about this, please do contact me by emailing talkingpoint@alzheimers.org.uk


    ***

    This discussion started with a question about Alzheimer’s Society, our guidance on language and how this applies to Talking Point. Hopefully this response helps to clarify things. As I’ve addressed that question, I’m going to close this particular discussion.

    You are welcome start your own discussions on how dementia is described and discussed – our Dementia News and Campaigns forum is an excellent place for those discussions. :)

    Best wishes,

    Serena
     
Thread Status:
Not open for further replies.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.