#ShareTheOrange - should we keep saying 'Alzheimers'?

[WJG]

I note (and applaud) the campaign on Twitter to get people thinking about the issues around dementia , although I admit that it took some time before I understood the significance of the orange analogy.

Part of this campaign would seem to be about getting people to consider the whole range of dementias, rather than just Alzheimer's Disease. Surfing around the web I see that many other dementia organisations have similar campaigns, and I'm sure that there is considerable confusion in the minds of the public on this.

So, without being too pedantic I hope, my question is this: would it be better for the Alzheimer's Society to change its name? it is, after all, an organisation that campaigns about all dementias, not just one. It's a bit like if there was a Lung Cancer Society that spoke up for everyone with all cancers: leukaemia, skin cancer, pancreatic cancer whatever.

In short, I wonder whether the very name of the Society is part of the problem that the Society itself is trying to educate people about.

Please understand that I don't wish in any way to belittle people with Alzheimer's at all. And I think AS is a fantastic organisation. I know that Alzheimers is the major form of dementia, and of course there's a need to support people with Alzheimer's . I just wonder if it isn't time for a bit of tweaking.

 

[jennifer1967]

i asked the question in the thread alzheimers day where i suggested it should be called dementia day as it encompasses all dementias of which there are several and asked the very question about name change in the thread especially as they are so supportive and my husband has vascular dementia although never felf excluded so dont know

 

[nae sporran]

My partner has Vascular Dementia and actually it was only when someone from Dementia Friends came to our supported living communal lounge that I realised how many different forms of dementia there are. It's an interesting question and one I'm not sure about, but do agree it's something for the society to think about.
I do agree with Jennifer that we never felt left out by Alz Society forum or activities, and I'm pleased she feels the same.

 

[jennifer1967]

My partner has Vascular Dementia and actually it was only when someone from Dementia Friends came to our supported living communal lounge that I realised how many different forms of dementia there are. It's an interesting question and one I'm not sure about, but do agree it's something for the society to think about.
I do agree with Jennifer that we never felt left out by Alz Society forum or activities, and I'm pleased she feels the same.

i did training about all dementias when i worked in a care home so know most of them not that it helps caring for my husband its all gone out the window when its someone you love

 

[Duggies-girl]

It is something to think about because it seems quite common that people are unaware that the term 'dementia' covers a number of different diseases. I have heard people say things such as their elderly relative didn't have alzhiemers, they had dementia.

I suppose unless you are directly affected by dementia then you are probably not going to make the effort to find out about it. I didn't and I never knew much about oesophageal cancer either but I feel quite the expert on both diseases now

 

[Izzy]

I sometimes use the umbrella image when talking with people who aren’t sure.

 

[Jaded'n'faded]

I would vote to change the name to Dementia Society.

I think sometimes, calling the disease Alzheimers, it can sound like a euphemism for what it actually is - dementia.

 

[kindred]

I would vote to change the name to Dementia Society.

I think sometimes, calling the disease Alzheimers, it can sound like a euphemism for what it actually is - dementia.

I certainly agree with you! Thank you, Kindred

 

[WJG]

I sometimes use the umbrella image when talking with people who aren’t sure.

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And it's a powerful image but is undercut by 'Alzheimer Scotland'. I must admit that until a few years ago I thought that Alzheimers was the blanket term for all Dementias. It wasn't until I did a radio report from a dementia care centre that I realised the error of my ways. Now I find myself with cortical atrophy and facing a possible dementia diagnosis - but the journey towards this has been hampered by professionals who havent themselves seemed to understand the differences between Dementias.

 

[WJG]

I would vote to change the name to Dementia Society.

I think sometimes, calling the disease Alzheimers, it can sound like a euphemism for what it actually is - dementia.

Well, there's nothing wrong in calling Alzheimer's Disease Alzheimers. It is, after all the most common and best known dementia. Much like the way that there's nothing wrong to saying Breast Cancer if that's the type of cancer one is talking about. Just as long as you don't think that Breast cancer somehow includes all other forms of cancer - which it obviously doesn't.

It's just that at present - and, I guess for good historical and name-recognition reasons - organisations at local and national levels seem to say: 'We're here for people with Alzheimer's and other Dementias'. I want to suggest that it makes more sense to say 'We're here for people with dementia, including people with Alzheimer's'.

 

[jennifer1967]

i understand national recognition as well as cost eg. letter headings paper etc that i agree with the compromise WJG suggested although when i started the suggestion it was only to rename the day. the wording that WJD is good as dont have to rename. renaming a charity is a nightmare and could lose funding because people dont recognise the different name. i went through it with one charity that had to change their name when i was vice-chair of the organisation and it was awful and never really meant the same afterwards. dementia day run by alz.soc. may have been better.

 

[Just me]

When I first joined the forum in 2013 I wasn’t sure if it was just for people affected by Alzhiemers and if it would be relevant to me (mum has vascular dementia) so I’m swayed by the argument to change the title.

 

[Frank68]

An interesting thread, and thoughtful contributions above.
My thoughts fall into two levels.
1. Individual. My wife has Alzheimers Disease, and I always try to refer to it as exactly that having noticed that the term AD is often used on the Forums. I use the word "disease" as it is my small way of campaigning for wider recognition that what my wife has is a DISEASE. I then hope that at least some will take that on board, and maybe understand that AD falls - or should do - within the family of illnesses and diseases which are the responsibility of the NHS. As we are all too aware on here, AD and other dementias are instead hived off from the NHS into a privatised care system, mostly run for profit, with means-tested support from local authorities. This is a national disgrace which has been 'kicked into the long grass' by different Governments since the 1980's - so I am not making a party political point. I know that this little effort of mine is small beer - but feel bound to do what I can.
2. Changing the name from the Alzheimer's Society to be more embracing? The difficulties and dangers of changing the title of a well-known and recognised charity has been covered above. Might an additional line serve well on letterheads - websites - publicity materials etc? At present there is a tiny flower motif proclaiming "united against dementia". This could be a more prominent statement - such as "united, caring and campaigning for all dementia sufferers and their families". That is much too clunky though - and AS will no doubt be properly sensitive about treading on the toes of other organisations that exist for specific sufferers, e.g. Parkinson's UK.
Perhaps in the end I would favour keeping the name as it is - make the flower and its wording a little more prominent - but at the top of this great website add to the top of the WELCOME section some words of explanation to make it clear that all dementias (there are over 200 types apparently) are welcome - but that that there are other websites and charities for some specific conditions e.g. Parkinson's UK which might be of value.

 

[WJG]

Yesterday I was searching the web pages of The Conversation for references to ‘dementia’. The Conversation is a project run by a consortium of Universities to make research more generally available and known about to a wider audience.There must have been 50 or so different articles about dementia, with about two-thirds starting with some version of ‘Dementia- the disease which robs people of their memories’.
It seems that the confusion between Alzheimer’s as one condition and its use as an umbrella idea is not just confined to lay people. I have nothing at all against the need to get more research focusing on Alzheimer’s and to get better help for people with Alzheimer’s, but it does seem that In the minds of many people Dementia means Alzheimer’s. So it would seem that there’s a big need to raise public and professional awareness of the other forms of dementia, especially as some don’t present at first as memory loss.

 

[jennifer1967]

i think you are right its education and the different effects of each type of dementias. with lewy bodies judging edges of say carpet are so hard that they lift they leg as if they are going up steps. im really interested in all the different dementias had have a thirst for knowledge of them to a point to do speeches to groups when im a bit stronger. i have done things like that before a very long time ago when i helped with training and running my own sessions. i have a lot of hidden talents and this seems to fire me up to all the prejudices ive been shown

 

[WJG]

i think you are right its education and the different effects of each type of dementias. with lewy bodies judging edges of say carpet are so hard that they lift they leg as if they are going up steps. im really interested in all the different dementias had have a thirst for knowledge of them to a point to do speeches to groups when im a bit stronger. i have done things like that before a very long time ago when i helped with training and running my own sessions. i have a lot of hidden talents and this seems to fire me up to all the prejudices ive been shown

?

 

[northumbrian_k]

Alzheimer's Society (AS) is a well recognised and respected brand. Before making any change there would have to be proper consideration of what this might hope to achieve, what would be the potential gains (eg in public understanding) and what might be lost. AS does use some terms that make it clearer that all dementias are covered and, indeed, that Alzheimer's Disease is itself one form of dementia. The Society's material includes such phrases as "United against dementia", "Leading the fight against dementia" and so on. As for the forums, they come under the collective name of Dementia Talking Point so there should not be any reason to think that they are only to do with Alzheimer's Disease. @Frank68 makes some good points.