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I don't have dementia

WJG

Registered User
Sep 13, 2020
108
0
Dementia, we are told, is a syndrome. A description of a state of dependence. I don't have it, and nor do most of the other folk I know with progressive brain diseases. We may, of course, one day.

And yet we use 'dementia' services, and here is this topic named 'I have dementia'. I would live to change the D word. I think it's unhelpful and outmoded. It describes people with the more severe symptoms of illness, and does a disservice to those of us with the earlier stages. But this seems to be a losing battle - everywhere I look people use 'dementia' to encompass everyone with Alzheimer's and other neuro degenerative conditions.
 

JC51

Registered User
Jan 5, 2021
155
0
Hi WJG, I don't really understand what you mean. If you haven't had a diagnosis saying you have Dementia in one of it's numerous types and stages, then why have you written this post?
Dementia as we all know is a progressive illness, and if you are diagnosed as having it, then that's it, we can't just give it a different name.
 

karaokePete

Registered User
Jul 23, 2017
6,121
0
N Ireland
I think I understand what you are suggesting @WJG.

Dementia is such a 'catch all' term for people who display so many different symptoms and we are so often told that every person with dementia is different - as evidenced by the posts on the forum.

Perhaps it's a term that's used so that services can be targeted towards a group of people who will have symptoms that will be more similar as their condition progresses, as suggested by @JC51. I also think it would be difficult for the public to take too many sub-groupings on board.

The reading I have done suggests that the end stage is similar for most so it may be practical to treat everyone within the same service from the early stages - not that there is a lot that can be done for so many of the people that receive a diagnosis.
 

northumbrian_k

Registered User
Mar 2, 2017
1,306
0
Newcastle
Hi @WJG While I think that I understand what you are saying, you may be swimming against the tide. The term 'dementia' is widely used to describe a range of conditions and diseases of which Alzheimer's Disease is one. People with dementia can vary greatly in how it affects them and, like other diseases, there is a broad spectrum from mild to very severe stages.

You might find it helpful to have a look at the resources produced by the Alzheimer's Society:

 

Countryboy

Registered User
Mar 17, 2005
1,621
0
South West
Hi WJG Great Thread very interesting having been diagnosed with dementia for 22 years in July 2021 o_O my GP medical records show it as Alzheimer’s my Memory Clinic show it as Frontal-temporal-dementia my Hospital record just showed Dementia :confused: that doesn’t bother me in the slightest. :D however when I was first diagnosed at memory clinic in July 1999 the Consultant said I had mild Alzheimer’s o_O I hadn’t heard that word before so didn’t know what it ment so I asked is that Good or Bad :p he the said Dementia I obviously knew what that was because both parents had dementia but back then we used words / phrases probably not politically correct now :cool::D like “Off their trolley” or Bonkers, Nuts, but it didn't bother them

Keep posting WJG.
 

Dimpsy

Registered User
Sep 2, 2019
1,817
0
Dementia; an umbrella word that encompasses different types of degenerative conditions and uttering the word aloud stirs emotions.

I've often thought that JK Rowling did immeasurable damage, naming those foul, gliding, desperate wraith like characters in the Harry Potter books, Dementors.

How does a child's mind fathom out the vile Dementor creatures to Grandma who's got dementia?
 

Duggies-girl

Registered User
Sep 6, 2017
2,571
0
Dementia; an umbrella word that encompasses different types of degenerative conditions and uttering the word aloud stirs emotions.

I've often thought that JK Rowling did immeasurable damage, naming those foul, gliding, desperate wraith like characters in the Harry Potter books, Dementors.

How does a child's mind fathom out the vile Dementor creatures to Grandma who's got dementia?
I had huge problems with the Harry Potter books. Dementors were the worst and Muggles, nasty, greedy, cruel, fat people.
 

Lawson58

Registered User
Aug 1, 2014
2,375
0
Victoria, Australia
Changing a name doesn't alter anything.

If someone has cancer, they may have one of a great number of different types.
But they still have cancer and we don't call it anything else.

When I was a kid, people used the word cancer in whispers because most of the diseases had a terrible survival rate. Now attitudes have changed though the word remains a constant.

When I was a kid, nobody had heard of the word Alzheimer's and the word dementia was always used in conjunction with that other word 'senile', and always never discussed openly. It seemed that if you didn't mention it, you could hide your head in the sand and pretend that it was never going to happen in your family.

Though dementia is still incurable, attitudes are changing, slowly and with room for improvement. Many people are ignorant about dementia but they still would be even if it was called something else.

It's up to all of us to help others understand dementia, whatever form it takes. I have friends who talked to me about getting help for elderly parents because they were aware that my husband has Alzheimer's so being open and honest was a good thing.
 

WJG

Registered User
Sep 13, 2020
108
0
I'm not going to hear anything against JK. For one thing the term 'demented' has long been with us, for another her generous donation enabled the founding of the Anne Roweling Clinic in Edinburgh - where I was diagnosed.
I appreciate that I am swimming against the tide. 'Dementia' has come to encompass all degrees of illness - not just the most severe. But trying to convince people that meant with dementia aren't demented is one tough gig. I think it's a label we should challenge.
 

Lawson58

Registered User
Aug 1, 2014
2,375
0
Victoria, Australia
I don't think I hear people being referred to as being demented. You hear that someone has dementia or a form of it or that they suffer with it.

And perhaps, if you want to go that way it might be better to say that not all people with dementia are demented. Sadly some people have behaviours that could easily be described as demented.
 

Philaddy

New member
May 10, 2021
1
0
I don't like the word Dementia and think it should be changed, if you think about the genesis of the word it seems to come from the Latin word "demens,” meaning “out of mind".

Also historically it was thought that people were possessed by "demons" and this was making them behave in a certain way and even today Demented is used as a derogatory term.

So for me the word Dementia seems to have purely negative connotations that harks back to a time of fear and ignorance. Perhaps a better umbrella term would be progressive brain disease?
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
17,016
0
67
Toronto, Canada
@Philaddy Welcome to DTP. I am certain you will find this forum a great comfort and a source of fresh ideas for any problems you may be experiencing. Just being with a group of people who truly understand is priceless.

Progressive brain disease does sound a more neutral and accurate term. I fear it is too long for people today. I think there is a difference in most people's minds between dementia and demented. I rarely hear the word demented today.
 

JC51

Registered User
Jan 5, 2021
155
0
Changing a name doesn't alter anything.

If someone has cancer, they may have one of a great number of different types.
But they still have cancer and we don't call it anything else.

When I was a kid, people used the word cancer in whispers because most of the diseases had a terrible survival rate. Now attitudes have changed though the word remains a constant.

When I was a kid, nobody had heard of the word Alzheimer's and the word dementia was always used in conjunction with that other word 'senile', and always never discussed openly. It seemed that if you didn't mention it, you could hide your head in the sand and pretend that it was never going to happen in your family.

Though dementia is still incurable, attitudes are changing, slowly and with room for improvement. Many people are ignorant about dementia but they still would be even if it was called something else.

It's up to all of us to help others understand dementia, whatever form it takes. I have friends who talked to me about getting help for elderly parents because they were aware that my husband has Alzheimer's so being open and honest was a good thing.
That is an awesome reply, well written and my view exactly.
Dementia is a medical term used around the world, it doesn't need changing.
At the end of the day, if you've got it, you've got it.
 

Spamar

Registered User
Oct 5, 2013
7,635
0
Suffolk
I usually say that OH had two forms of dementia and this comes as a great surprise to many. So wider knowledge is needed in the general community about dementia in all its forms. I do my best!
 

Lawson58

Registered User
Aug 1, 2014
2,375
0
Victoria, Australia
I usually say that OH had two forms of dementia and this comes as a great surprise to many. So wider knowledge is needed in the general community about dementia in all its forms. I do my best!
And my husband's first diagnosis was 'atypical' Alzheimer's, the second was 'fronto variant', the third was 'non amnesiac' and now the doctors have given up and just say that he has a 'non classical' form of the disease.

And it doesn't matter what they call it, he still has a type of dementia.
 

SallyJo

Registered User
Nov 28, 2016
8
0
Dementia, we are told, is a syndrome. A description of a state of dependence. I don't have it, and nor do most of the other folk I know with progressive brain diseases. We may, of course, one day.

And yet we use 'dementia' services, and here is this topic named 'I have dementia'. I would live to change the D word. I think it's unhelpful and outmoded. It describes people with the more severe symptoms of illness, and does a disservice to those of us with the earlier stages. But this seems to be a losing battle - everywhere I look people use 'dementia' to encompass everyone with Alzheimer's and other neuro degenerative conditions.
Please tell me more. I am 70 and after being pretty competent all my life - teaching, running a Citizens Advice Bureau etc I now can’t even follow/remember the plot of a good novel. I haven’t had a diagnosis yet as I hate taking medications and Im not sure if I even want a label. What for? I can plan and organise things without a label. Online tests (I am sceptical) confirm my suspicions but how is that helpful? What do you think?
 

SallyJo

Registered User
Nov 28, 2016
8
0
Hi WJG Great Thread very interesting having been diagnosed with dementia for 22 years in July 2021 o_O my GP medical records show it as Alzheimer’s my Memory Clinic show it as Frontal-temporal-dementia my Hospital record just showed Dementia :confused: that doesn’t bother me in the slightest. :D however when I was first diagnosed at memory clinic in July 1999 the Consultant said I had mild Alzheimer’s o_O I hadn’t heard that word before so didn’t know what it ment so I asked is that Good or Bad :p he the said Dementia I obviously knew what that was because both parents had dementia but back then we used words / phrases probably not politically correct now :cool::D like “Off their trolley” or Bonkers, Nuts, but it didn't bother them

Keep posting WJG.
I’d love to hear more about how it’s been for you over those 22 years! You still write well… how is life for you?
 

Sarasa

Volunteer Host
Apr 13, 2018
3,072
0
Hi @Sally-jo,

The first thing is to make an appointment with your GP, not easy in current times I know but the best place to start. There are lots of other things that can mimic the symptom of dementia, so don't assume that any difficulties you are having are caused by that.
You may find it helpful to start a thread of your own, so that more people spot it.
I'm sure other people will be along in a moment with their advice and suggestions.
 

lemonbalm

Registered User
May 21, 2018
1,516
0
Hello @SallyJo

I see you have been worried about this for a while. After the past extraordinary year or so, with so little social contact and quite a lot of stress all round, I imagine that our powers of concentration may have suffered and any underlying worries may have resurfaced or been magnified.

As @Sarasa has mentioned, there are many other conditions which can mimic the symptoms of dementia. Stress, depression. vitamin deficiency, thyroid issues. Best to consult your GP if you are concerned and have a check up. I'm not sure online tests are a good idea. They will no doubt scare us all to bits!