1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    I just had an idea, probably one that has already been done, so excuse me if I am unoriginal but...

    How about if people who are affected by dementias wear a pin on forget me not flower, so that people will stop and comment on it and then this opens an opportunity to speak out about dementias, will show the number of people affected, will bring more awareness, will allow us to speak out about what dementia really is and how important it is that more research is done and better care facilities provided, etc.

    I don't suggest to make this just a one day a year thing for fund raising as then everyone wears it just to show that they care but doesn't do any more than that. Instead it could be used like a symbol of mourning, not only about the toll dementias have on our loved ones and us, but mourning for the lack of a cure, the lack of awareness, understanding, action etc.

    Naturally not everyone would want to wear one because sometimes you just don't want people to ask....

    It was just a thought, does anyone know if this is already done?
     

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  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    In the UK we have an Alzheimer's Society badge - yellow - that is available. ...but I've just gone to the AS online shop and can't find it, so that's a dead end.

    What I think you are thinking is an internationally recognised symbol. Great idea.

    If only someone could arrange it!
     
  3. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    yellow elephant!

    Hi

    I wear a small yellow elephant pin badge which I got from one of the AD fun raising stands in the Four Seasons Centre, Mansfield last year. Remember elephants never forget!

    Katie
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    that's the badge I meant, but I can't find mention of it on the AS web shop.
     
  5. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi,

    I think the forget-me-not is the symbol of the Alzheimer Society of Canada:

    http://www.alzheimer.ca/english/index.php

    I have to say that I have reservations about the yellow elephant mascot - it seems very dated and could serve to reinforce certain misconceptions about AD.

    Take care,

    Sandy
     
  6. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Ta

    Thanks Sandy, do you ever get sick of people saying you are a wealth of knowledge?

    I'll look into what Canada is doing.
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I agree with Sandy, the forget-me-not is a far more powerful and more appropriate and evocative symbol.....
     
  8. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    What next

    I emailed the Australian Alzheimer's society last night asking about what kind of things they have, i.e. pins, badges, ribbons, bands etc.

    I'll see what they have to say.

    I have to admit I'm a little annoyed that on their webpage they have only pictures of 'old' people.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    It is the normal thing for such sites to show only the older people [usually 70s and 80s], and generally to show them as happy beings, just losing a few memories, and often with caring family close to them.

    Understandable since the majority of incidence of dementia is in the over 65s. It might confuse the public at large to see pictures of people under 65 - is there an image one could use that is instantly recognisable as a younger person with dementia? I guess not.

    The Australian site does have a section on Early Onset [http://www.alzheimers.org.au/content.cfm?infopageid=914] and some good references if one types in Early Onset as a search term.

    There is a good section there including reference to a book Young people with dementia: Planning,practice and development, edited by Sylvia Cox and John Keady. "This is the first book to address the subject of younger people with dementia in its own right. Although not specifically for carers, it explores the implications for younger people with dementia and their families at personal, planning and service development levels."

    This may be the best we can hope for. The challenge is, that until the fact of early onset dementia is widely recognised - even among the medical fraternity - those who have it, and their families, will be at a disadvantage.
     
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    I have surfed the net, as one does and cannot find anything about the elephant badge?
    Big elephants on displays but no elephant badge
    Norman
     
  12. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    OZ AD Org

    Hey Brucie,

    Thanks for the link,...

    I don't know how old the doc is (maybe 2003) but based on the Australian population in 2003 and the number of early onset dementia cases they listed...

    Dad is 0.03% (no not 3%) of the population! How unlucky can you be!?
     
  13. daughter

    daughter Registered User

    Mar 16, 2005
    824
  14. Cat264

    Cat264 Registered User

    Sep 28, 2005
    3
    London
    Badges & the Forget me not

    Hi

    I've been reading with interest your discussions on the badges and especially the forget-me-not.

    I manage the mail order, corporate and retail activity for the Society and I've been doing some research recently on the forget-me-not image. (For ref quite a few of the international Alzheimer's charities already use the forget-me-not).

    Without going into great detail (yawn - thank goodness), introducing different images does have an impact on the Society's brand. For example my partner thought the elephant was the Society's official logo. (Oops!)

    We have used a forget-me-not image on a range of promotional goods which are featured in the current Christmas catalogue (back page).

    As for the yellow badge with the triangle cut out. This was used as a fundraising tool a few years ago. I'm not sure if there is any stock left. You'd need to contact someone in fundraising, as the trading arm didn't sell this particular badge.

    The yellow elephant badge branches can still order but due to limited space in the catalogue it is not available for general public orders.

    The official blue pin badge is featured on page 63 of the catalogue.

    I hope I've been able to help.

    Cathy
     
  15. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Cat's catalogue

    On-line catalogue? Can they be mailed to Australia? Am in Australia....no word yet from the Australian society.
     
  16. Cat264

    Cat264 Registered User

    Sep 28, 2005
    3
    London
    On-line catalogue

    Hi

    Our on-line shop is available at:

    www.alzheimerssocietyshop.co.uk

    Unfortunately Webb Ivory, the company that runs our catalogue campaign do not post overseas. However, if you let me know what you're interested in ordering I may be able to sort something out for you.

    For ref all orders have to be paid for in advance.

    Do let me know ifyou're interested.

    Many thanks
    Cathy
     
  17. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Hazel Hawke

    Hazel,

    The Hazel Hawke you mentioned was the much loved by the public, wife of the 'a little less loved' Prime Minister, Bob Hawke of Australia for most of the 80s. They are now divorced.

    I remember watching that 60 minutes program with anticipation, glad that somebody was finally showing the public about the devestation of this disease. I thought if the public sees what this cruel disease does to Hazel then there will be uproar. Unfortunately the program disappointed me, it was full of nostalgia and warm fuzzy memories but as her family really didn't seem to realise just how bad it would get (understandable in the early phases and due tot he lack of real public info), you were left thinking poor sweet Hazel, she's just going to fade softly away, forget her friends and family, and no longer be able to play the piano.

    I think this quote by Hazel says it all with regards to how they thought the illness would progress 'but to have … it's not exactly a disability. Well, it is in some degree, of course. As nuisance, it's a jolly nuisance. But it doesn't affect my life very much.' Oh my god! Thats what the public of Australia heard.

    There was an online chat with Hazel's daughter about the program held straight after and I got online hoping that I could give them some warning and also to thank them for going public and to ask if they could continue to do so when things got worse, but I was further frustrated because it was one of those online chats where you submit your questions and then they only select a few. I spent an hour waiting for my questions to come up and they never did, but as they had a public chat area I spent the whole time answering all the questions of the people that were online with me! Nobody seemed to have a clue!

    I hope for Hazel's sake and her family that hers is a less aggressive type of Alzhiemer's than my father's because I shuddered that night to think about what they had no idea was to come.
     
  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I understand your frustration and now, at this stage, I agree.

    I probably wouldn't have agreed, when Jan was in the early to mid stages. I preferred us to live in relative ignorance [well, I did know it would get very much worse, but didn't want just how pushed right in my face].

    Jan and I were the ultimate romantic couple for 33 years living together. The progression, day by grinding day, without anticipating things that might never happen to her [and have not happened] was probably all we could handle.

    I don't regret that now.

    The issue of public understanding of just what dementia means is more an issue of

    1) their understanding [if not support] for relatives, friends, neighbours and people who have dementia

    and

    2) their supporting dementia in the same way that cancer and other causes are supported [ie £££££ $$$$$]

    and

    3) their pressuring government to provide properly for the care of people with dementia. Pictures of happy old folks, and nice positive statements ["its a nuisance"] will never do that.
     
  19. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    I'm going to have a little spit, no not at you Brucie

    Unfortunately for me I'm one of those people who prefer to know, and I find there are not many people out there who do.

    Give me the facts as hard as you can front up, no matter how bad they might be, I sooo prefer that! I don't know why I'm like that but I am, maybe I've been lied to, too much in my life and have found that for me I cope far better finding out the truth as soon as it is known because I feel comfortable with the fact that I can deal with anything that is doled out to me, just so long as I know what it is.

    Of course there is a certain amount of not being able to truly conceive of what is to come, just like you never believe it 'could happen to you', but I'm damn sure if I saw yelling men and dribbling ladies and was told this is where Dad is heading, it would have hit home.

    I know, I know the majority of you are going to say no way, you wouldn't have wanted that, but I'm different and I guess I'm very angry that someone thought I needed to be mollycoddled, it is not 'others' place to decide what you do and don't need to know. As a compromise why don't doctors and other assisting groups ask people affected, do you want the hard cold facts or the best case scenario? I damn well would have talked a heck of a lot more to Dad to find out who he was other than 'my Dad' had I known how bad things were going to get and how quickly he'd be gone.

    As for dignity, I know it is important to a lot of people, but I make this oath here right now, if I ever get dementia and they still haven't found a cure and people still don't understand it, I will insist on my whole journey to be filmed and ask that it be made into a documentary, for those who want to know. That's not making judgements on anyone who doesn't want to do that, I've already acknowledged that I'm different, not saying my way is better, its just my way.
     
  20. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Unfortunately for me I'm one of those people who prefer to know, and I find there are not many people out there who do.


    and therein lies the rub.

    The challenge is to cope with the neds of both kinds of people, and all those in between and outside, and all the time remembering that we the carers are just observers [albeit very very close] and massive empathisers, and we have to protect the interests of those who have the dementia. Those interests are in terms of helping them to cope all the way through without scaring them witless in the earlier stages.

    ...and somehow we have to get around the view that society has generally of dementia that it is just forgetfulness.

    At the recent AS annual conference where I was invited to be on a questions panel, I chose not to argue the point when one of the audience asked "what about human dignity" when I was promoting the use of photographs of more advanced stages of dementia, in place of the pictures of happy old people we get all the time. Too often these people think about their own 'dignity' in having to look at those who are in reality immensely dignified in coping with problems of gigantic proportions. But clearly there are limits of acceptability for anything.

    ...interesting topic for discussion!
     

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