Is the media only interested in Alzheimers?

Jancis

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Jun 30, 2010
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Did anyone read A.A. Gill's story in The Times today? The Times Christmas Appeal may not be reaching TP members and I must confess if it wasn't for my husband I wouldn't have read Mr Gill's story today. His account of his father "This cruel vanishing act is such a hard thing to watch" is brilliant and should be read by all on this forum. Perhaps the Society could make this article available without having to subscribe to The Times???? Please.

Just one thing I would like to add - dementia is a terrible illness but it concerns me that Alzheimers seems to be the disease that famous people write about. I have a dreadful feeling that people with other kinds of dementia are deemed not as 'interesting' as those with Alzheimers.
 

Grannie G

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Apr 3, 2006
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Hello Janis

I think people use the term Alzheimer`s instead of Dementia as it seems more acceptable. It is misleading I know, but Dhiren accepts Alzheimer`s but would be upset by dementia.
 

Jancis

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Yes, thank you Jennifer.

Hi Sylvia,
My SIL told me that her mother didn't have a diagnosis of Alzheimers and therefore she didn't think the Alzheimer's Society could help her.

How many other folk feel they cannot contact the society?

Just my own personal experience.
 

Helen33

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Jul 20, 2008
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This is as near to a quote as I can make from the consultant who diagnosed Alan.
"Your husband has a very rare form of dementia which is a semantic dementia of the frontotemperal lobe. It is not Alzheimers disease and there is no medication to help and there is no cure. No ones knows very much about this particular disease".

I left interpreting this statement as "It is rare, no ones knows much about it and there is no help". I couldn't contact the AZ Society because I was told it wasn't Alzheimers Disease. It was only a year to 18 months later that a colleague of mine asked me to contact the AZ Society and I told her there was no point because he didn't have AZ. She said that she didn't think it would matter. I wish it had been common knowledge then that the AZ Society could help people with various forms of dementia. It has always been a very misleading name. I only presume that it must be something to do with funding??
 

jenniferpa

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Jun 27, 2006
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This is very much speculation on my part, because I don't actually know, but I have always believed it was more to do with name recognition rather than anything else. People know and trust the Alzheimer's Society and the danger with renaming something like that is that people simply won't recognise who or what they are.

Having said that, I was another person who didn't consider asking the AS for help (my mother had had a stroke, not alzheimer's). I wonder how Age UK (aka age concern) have managed their name change? How much did it cost them to rebrand?
 

FifiMo

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Feb 10, 2010
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I think that the Alzheimers Society is wrong quite frankly. I think the name is misleading and that, as great a service as it provides, the name prohibits those with anything other than Alzheimers from believing that they also cover their interests. I wonder how many more members the Society would attract if it had a more appropriate name for example. I also wonder if they would find the extent of any donations increasing dramatically if it was clear that it was a Society there to cover all sorts of dementia. I, for example, would probably choose NOT to donate to a Society that was researching Alzheimers, when my loved one had had, say, Vascular Dementia. They could perhaps just change the name of the society to something like Alzheimers and Dementia Society.

Not saying anything here that i've not already told AS direct. Even pointed it out to them in their survey.

Fiona
 

Canadian Joanne

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Apr 8, 2005
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As Jennifer said, there is the recognition factor but also I feel it is because approximately 65% of people diagnosed with dementias suffer with Alzheimer's. So overall there are more people. I suspect this may change somewhat in the future with more precise diagnoses but AD will probably remain the most common form of dementia.

Here in Canada we also have the same problem of people thinking the AS isn't relevant to them. It's a continual educational process.
 

Mariondb

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Aug 24, 2011
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I do have to agree that the Alzheimers Society's name seems to make it exclusive to Alzheimers. I came upon it as pure chance when I googled dementia, otherwise I would not have looked at it as my MIL is a dementia patient.

I see no stigma with dementia - although I hated previously the term "senile dementia". The main thing is to ensure that carers, relatives understand that the Society actually offers support and information for any condition that comes into the category of dementia.

This is so important because until you know someone blighted by the condition, to a certain extent you live in blissful ignorance until you need to get help and support fast and you may not automatically think of Alzheimers without that diagnosis.
 

Helen33

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Jul 20, 2008
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As the Alzheimers soc. must be very familiar with this complaint I suspect there must be reasons that I know nothing about. Maybe the society doesn't feel qualified or experienced enough about other forms of dementia to dare represent them in the name??? Maybe it would have a huge task in sharing funding towards research??? At the moment I suspect that funding for research going to the Society goes in the Alzheimers research pot???

Personally I feel a more inclusive name which doesn't alter the current name drastically would be a simple matter if it weren't for other factors which I am not privy to. If the society was really interested in making such a change it could ask the general public what name they would like and see if something suitable comes up.
 

hollycat

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Nov 20, 2011
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Till I researched I was ignorant between 2 common words ie alzheimers and dementia. Now I understand it is very easy to understand the general ignorance of the general public.

Similarly, is it ebixa, ibixa, memantine, metamime etc etc

Was a vacuum cleaner a hoover till dyson came along ?

If people strugle to find this site as there loved ones have dementia, does it not fall down at the SOURCE ie doctor/consultant ?

am not being argumentative, but alzheimers society I belive is better so long as there is a general ignorance.

When selecting wine, my dad says "I like the one that says what it is.......red wine.....I cant do with chateau whatever"

An interesting thread, tks for starting it
 

Chemmy

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Nov 7, 2011
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If you look at the heading at the top of this page it says

Alzheimer's Society Leading the fight against dementia,

so they probably think that the strapline covers the whole dementia spectrum.

Dementia equates to 'demented' or mad amongst many older members of society, often the very ones who are afflicted, so perhaps that's the reasoning behind it.

I would support the idea of the Alzheimers and Dementia Society, rather than a completely new name, but I suppose in terms of branding/marketing, which is important in fund-raising, it's a bit long-winded.
 

Helen33

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Jul 20, 2008
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Hi Chemmy,

Alzheimer's Society Leading the fight against dementia,

Although that is the current heading it is really very unclear. It seems to imply leading the fight against Alzheimers which is dementia!!!!:eek: It seems to wrongly educate right from the very start!!!! There is not much point seeking to educate the public when the very name is reinforcing a false understanding. Even if there was a little bracket underneath the name that mentioned the names of other dementias it would be a constant source of proper education. There will be a simple way of doing it I am sure.
 
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Chemmy

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Nov 7, 2011
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Yorkshire
Maybe the strapline just needs to say

Leading the fight against all types of dementia.

I agree totally with Hollycat though; every diagnosis or initial concern is raised in the first instance at the GP's surgery. They should automatically point relatives towards the society, both at local level and nationally on the web, as this would alleviate a lot of heartache right at the start.
 

Nan2seven

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Apr 11, 2009
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Dorset
Our GP (wonderful though he is!) did not know of the Alzheimer's Society website until I told him how much support I was getting from it. It was the Consultant at the Memory Clinic who recommended the site to me, saying do not be put off by the fact that it is called Alzheimer's. (He had just diagnosed Brian with vascular dementia.) I did delay for a few weeks and then looked it up in April 2009. It has given me huge support ever since.

Love, Nan XXX
 

jenniferpa

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Jun 27, 2006
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That's the Admiral nurse site and I do think it's recommended quite frequently in that context. Well I know I have. :)
 

Jancis

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Jun 30, 2010
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Reclassify dementia illnesses?

As Alzheimer's disease is the most common cause of dementia it has received the most publicity and seems to be the diagnosis which generates the most sympathy and interest from the world at large. Alzheimer's has less accompanying stigma than other types of dementia.

Would it not be better to reclassify dementia under types perhaps under the banner of Azheimer's Disease e.g. AD type A, B, C, D etc?