There is a stigma around Alzheimer’s disease

[Rigerta]

I'm not sure I would categorize that as "stigma": that sound more like fear - fear of how to deal with the person, fear of saying the wrong thing, fear of being embarrassed. And that happens. A lot.

Stigma (at least as it is defined by the dictionary) involves judgement (in the eye of the beholder) and shame on the part of the stigmatized. It's all about disgrace. And while the way some people treat people with dementia and their carers IS disgraceful, that's more to do with their shortcomings. While I've come across the whole gamut of embarrassment and the rest of it, I've never encountered the "you have this, it's your fault" that stigma implies. I'm not saying it doesn't exist, but I've not seen it.

Watch the video

'shifting the perception of Alzheimer's disease and creating positive outcomes' on Youtube by Kim Warchol

 

[SitsThere]

I think the original question here was framed in a way that revealed what could charitably be called limited understanding, but in fact there is an important point to be made here and it is this: for my parents' generation there really was a stigma (due to ignorance) attached to having what was then called "senile dementia" and for that reason people of that generation suffer greatly during the process of diagnosis and often refuse to accept that they have this disease.

Perhaps this is what Rigerta was alluding to.

I agree with other posters here that it is unhelpful to use emotive and vague terms like "stigma" in any informed or scientific discussion of this illness. Witzend hits the nail on the head in saying that the media don't express where the real difficulties for dementia sufferers and their carers lie because it is too graphic and too hard to take unless you have no choice. But I can honestly say that the only person I know who associates a dementia diagnosis with "stigma" is my mother, who has dementia but won't allow us to say so.

 

[Izzy]

I just watched both video clips. I honestly cannot say that this person is taking about stigma. She is talking about negative perceptions that people hold and how important it is to work for positive outcomes for people with dementia. There is nothing in what she is saying that is new to me or I would imagine other members of this forum.

I respectfully ask again if you have read some of the threads in this forum. My husband was diagnosed 14 years ago and is at an advanced stage. We still have a very good quality of this and I work hard to make sure of this. There are many people who post on this forum who live in very difficult circumstances but ensure positive outcomes for the person they carefor.

My mother had vascular dementia and she died 3 years ago at the age of 93. I would agree that her generation possibly felt a stigma attached to dementia. In my 14 years of caring for my husband I have come across misunderstandings and lack of knowledge but have never felt a stigma in relation to his condition.

These are the links to the clips -

http://youtu.be/2kUT6PcIiN8

http://youtu.be/-k6LfwkFa4c

 

[Adcat]

I'm not sure I would categorize that as "stigma": that sound more like fear - fear of how to deal with the person, fear of saying the wrong thing, fear of being embarrassed. And that happens. A lot.

Stigma (at least as it is defined by the dictionary) involves judgement (in the eye of the beholder) and shame on the part of the stigmatized. It's all about disgrace. And while the way some people treat people with dementia and their carers IS disgraceful, that's more to do with their shortcomings. While I've come across the whole gamut of embarrassment and the rest of it, I've never encountered the "you have this, it's your fault" that stigma implies. I'm not saying it doesn't exist, but I've not seen it.

I think most people think dementia is a mental illness. I found this quote fro a well respected mental health site;

Three out of four people with a mental illness report that they have experienced stigma. Stigma is a mark of disgrace that sets a person apart. When a person is labelled by their illness they are seen as part of a stereotyped group. Negative attitudes create prejudice which leads to negative actions and discrimination.

I feel that this accurately reflects my experience based on what I currently deal with and the what I went through with my mother. Mum could communicate effectively and appropriately. Dad can't. Dad cannot report how he feels isolated, he can't articulate the negative attitudes or discrimination he has experienced but I have witnessed this first hand.

 

[jenniferpa]

I totally agree about the videos Izzy.

And as a sidebar: what's with the appalling close captioning? I mean these videos have been up since 2011 and no one has thought to check the subtitles?

 

[Rigerta]

You have to agree that there is a misunderstanding and that should be tackled in the best way possible

The reason to why i posted what i did was because of the research i have done.

A lot of sources whether it be journals or thoroughly researched reports have stated such results, some being because people are poorly educated in the matter and others stating that it is poorly addressed in the media.

I agree that there is not a stigma in this day and age but people still have a negative approach to the matter (i.e. people who vaguely know about the topic)

so this is why i ask if i can have some personal opinions to how this can be changed, forget what the media does and what you are told
I really would like to know from real people who have experiences

 

[jenniferpa]

I think all of us here are real people with real experiences.

It's still not clear to me what you are looking for: as Izzy said, your best bet is to read the forums.

 

[Izzy]

I agree that there is not a stigma in this day and age but people still have a negative approach to the matter (i.e. people who vaguely know about the topic)

so this is why i ask if i can have some personal opinions to how this can be changed, forget what the media does and what you are told
I really would like to know from real people who have experiences

Sorry this is the last time I'll comment. The forum is awash with personal opinions. I for one am too tired to go into my experiences again when they're all here. I'm off to take my husband to the toilet for the first visit of what will be a long night.

 

[Rigerta]

Thank you to the people who really tried to give me a decent answer, i do apologise if it may have caused any discomfort to anyone

Another post will be posted soon, a well revised post this time

 

[Rigerta]

Sorry this is the last time I'll comment. The forum is awash with personal opinions. I for one am too tired to go into my experiences again when they're all here. I'm off to take my husband to the toilet for the first visit of what will be a long night.

Hope everything is well with you, i know the forum is full of personal experiences and opinions but for research purposes it has to all come from a particular post.

Goodnight

 

[Snowedunder]

intrusion

Rigerta's intrusion on this forum reminds me of when my son died, many years ago. Someone I knew slightly appeared to befriend me but was using my grief to further her research for her psychology degree. When I discovered this it felt like a violation.
If Rigerta is really caring for someone who has dementia, she will know at first hand whether there is a stigma associated with it, just from her everyday experience.

 

[Kevinl]

Goodnight

Don't slam the door on the way out...BANG...too late, then again it may have been the wind being taken out of her sails that made the door slam shut.
Is anyone any the wiser what was expected of us?
K

 

[Oxy]

Well trying for a PhD but NOT getting it. Listen to what we are telling you, read the forum. If you understood the complexities then you would not expect to get all from one post. Each and every one experiences a D in their own way.

 

[Oxy]

Kevinl, I think the incorrect words are being utilised. Maybe it refers to lack of understanding which in turn causes lack of support from agencies which can be gleaned by reading posts. Lip service by governments, funding etc may be involved. Care problems, again all available in abundance on this site. Cant see anyone writing a thesis on basis of one poster.

 

[Loopiloo]

I just watched both video clips. I honestly cannot say that this person is taking about stigma. She is talking about negative perceptions that people hold and how important it is to work for positive outcomes for people with dementia. There is nothing in what she is saying that is new to me or I would imagine other members of this forum.

These are the links to the clips -

http://youtu.be/2kUT6PcIiN8

http://youtu.be/-k6LfwkFa4c

Thanks Izzy for links. I clicked on the first one then on the lead to the continued video. It is too late now, I am too tired to write much, but I thought how true what she said.

If only every member of staff in every care home had both the ability to relate to dementia residents in this way, and also the time to spend with them..... Something I feel very strongly about.

But the reality is that not all staff have that ability although many do. But even the latter simply do not have the time to spend one-to-one sessions with every dementia resident who would benefit, and so there is no continuity. Only at best the occasional such session.

Loo

 

[Lindy50]

Just a thought....one could write a qualitative report on the effects of dementia by reading this forum. To do a quantitative study, you obviously need numbers eg 83% of TP posters agree that there is no stigma attached to dementia.....or whatever.

I can only think that Rigerta may have been after such numbers. Unfortunately, that isn't what the forum is about and that's why I am afraid, Rigerta, I doubt you'll get what you're looking for here.

If, on the other hand, you are looking for support in caring for your family member with dementia......then this would be the place for you

 

[Kevinl]

Well trying for a PhD.

I think it's a degree from what I read here, possibly a masters
"In UK universities, a dissertation is an extended piece of writing based on extended reading and some independent research at Undergraduate or Masters level."
So I'm guessing we're the "some independent research" bit but as with most research it just proves what you want it to prove, sometimes it just blows up in your face
K

 

[jenniferpa]

While it's perfectly OK to come to this forum and ask for general opinions, it appears that what you are actually doing is attempting to use the forum in contravention of

2.4 The use of the message boards for gathering information for surveys, articles and research studies, or similar, is prohibited unless prior permission has been given by Alzheimer's Society.

As far as I'm aware, such permission has not been sought. Because of this, I am closing this thread. If you wish to obtain permission please read this section of our help pages http://forum.alzheimers.org.uk/faq.php?faq=about_talking_point#faq_researchersandstudents