PC terminology-Will TP entries have to comply to this terminalogy?

[Canadian Joanne]

I started this share on a very specific subject-and it was about words (images became a secondary discussion )
My point was user and members of the Alzheimers Society site were asked to contact journalists and the media portraying Alzheimers with particular words. I repeat- the information from this website

• Sufferer or victim – a diagnosis of dementia doesn’t define anyone and we should never label people with dementia. Use ‘people (or person) living with dementia’ instead.
• Senile, pre-senile or demented – these outdated words disempower people with dementia by making them seem passive, childlike, or worthy of pity.
• ‘Away with the fairies’ or ‘not all there’ – these slang expressions and others are derogatory and very insulting to people with dementia.
• Burden – this dehumanizes someone, and makes them out to be nothing more than a drain on time and resources rather than a person.
• Hopeless or tragic – it is important to be realistic about dementia while not being overly pessimistic or frightening. Use words like ‘challenging’, ‘life-changing’ or ‘stressful’ instead.

I suggest that we should respect people those with Alzheimer's disease, but the use of many of these words are very acceptable to me in media and by journalist. I do not know why we are being advised to not use these words around our life situations. (Excluding bullet point 3 which is certainly just disrepectful) I would to know why the site would like us to encourage a sanitized of our experiences in the media. How will that benefit our cause?

This is where our individuality shows up. I personally am not enthralled with some of these terms - Bullet 2, 3, 4, and 5. Honestly I'm not that keen on 1 either. But it is all through my personal point of view.

My mother had Alzheimer's but I never thought of her as a victim or sufferer. The early years were particularly tumultuous, as older members who knew me then can remember. I didn't think of myself as a victim either. To me, using those words is a distancing mechanism.

I do NOT like the terms senile or pre-senile at all. Demented doesn't bother me though.

Away with the fairies or not all there is simply ignorant and glib, in my opinion.

Burden - yes, I had some very hard times with Mum. Was she a burden? There were times when the circumstances were a burden and events were quite frankly horrible but the word 'burden' to describe Mum was not right.

Hopeless and tragic are fair descriptions at times but I don't like them. I think these words make it easy for some to look the other way.

So I think it's okay if a person wants to use these terms to describe their loved one. I don't and didn't want to do that. Again, it comes down to a personal point of view.

 

[PalSal]

I have read through this thread with growing interest. Not really sure where to start as so many bells have rung in my head. Any way here goes.
1) I think what gets me with the happy pictures of living well with dementia is where is the balance? Where is the coverage of not living well with dementia? The Carers virtually house bound looking after a loved one, getting out mostly to doctors appointments, etc. The sickening moments when the carer realises some other capacity has finally been lost. What do people think carer burn out means?
2) So right regarding the funding. No problem here so please move along. I sit and watch politicians pontificate on the social care crisis, usually around the time they move onto the need to reduce taxes, seek value for money, or wheel out their pet spending project. Initially it grates, then it jars, then it really annoys. Remember Carers have votes matey.
3) To be fair to the wider public I think until you actually come into direct contact with dementia you genuinely have very little idea of what it entails. An aging population means more people are experiencing dementia, numbers which will only grow. Certainly the case for me in terms of direct contact with the condition. Become a carer and you start a journey where you get a great deal of knowledge and experience. For the general public arguably it is a beyond a question of not caring, more just not knowing. They have families, careers, social lives, financial concerns, children to bring up, etc. The things we mostly all did in part before we became Carers. Those still doing them and caring I really feel for most of all. However that excuse wears very thin when close relatives and friends sometimes do a runner or become helicopters, randomly landing making a lot of noise, criticising, making at best poor suggestions, then taking off again. Suddenly reality is crashing through the door,
4) I find now contacts in a local Carers group, this forum, etc, have become my reliable guiding stars. Life has constricted, loneliness becomes a new companion in my life, I experience negative feelings, etc, then try my hardest to be positive. For me the growing feeling of disconnection with the “outside world” is the hardest thing to deal with. Is that part of living badly with caring, a character flaw, or just the inevitable lot of most Carers? You tell me.
4) When out and about with mum I find the people most helpful are those who have experience of caring at some point in their life. Buying something in a shop and repetition starts. Do you get the look “please do something about this, make it go away, I am being made to feel uncomfortable”, or do you get the compassionate look, saying I know what you are going through? A person with experience of the road beyond “living well with dementia”.

Please keep posting threads like this one and others. Relative newbies like me learn so much. I guess to quote a hackneyed politician “we are all in it together”, only some more than others chum. Or the film “think bridge beautiful bridge and it will be there”.

@Whisperer

This is where our individuality shows up. I personally am not enthralled with some of these terms - Bullet 2, 3, 4, and 5. Honestly I'm not that keen on 1 either. But it is all through my personal point of view.

My mother had Alzheimer's but I never thought of her as a victim or sufferer. The early years were particularly tumultuous, as older members who knew me then can remember. I didn't think of myself as a victim either. To me, using those words is a distancing mechanism.

I do NOT like the terms senile or pre-senile at all. Demented doesn't bother me though.

Away with the fairies or not all there is simply ignorant and glib, in my opinion.

Burden - yes, I had some very hard times with Mum. Was she a burden? There were times when the circumstances were a burden and events were quite frankly horrible but the word 'burden' to describe Mum was not right.

Hopeless and tragic are fair descriptions at times but I don't like them. I think these words make it easy for some to look the other way.

So I think it's okay if a person wants to use these terms to describe their loved one. I don't and didn't want to do that. Again, it comes down to a personal point of view.

 

[Kevinl]

I agree with the AZ society, none of the words or phrases are really acceptable, they're all a bit either dismissive or old fashioned and probably best left in the past.
My wife has dementia but I'd never say she was demented, nor would I ever say she was a burden, hard work, challenging but never a burden, looking after a child can be hard work and challenging but has anyone ever called having a child a burden, do that and social services will take them off you.
I don't see what the AZ society are asking for is being "PC" and al those 2 letters imply, we have to move with the times and some of the older terminology may not now be appropriate.
If anyone on here says they don't like the "burden of looking after their demented mum, she's away with the fairies, it's tragic" then they're free to do so, the AZ society is addressing their comments to the press and media, however, using a phrase like that on here just wouldn't be acceptable to the members of the site and I'm sure they'd say so, so why is it OK for the media to use these terms?
K

 

[PalSal]

@Whisperer

@Canadian Joanne
I completely agree with you, the disease manifests differently in each individual. I used to get upset when people would say to me "OH, my mother has Alzheimers she is 90" or whatever. My husband was in his 40s. I struggled with the comparison at the time, but I now know that everyone suffers when a loved one is diminished by disease, this is painful no matter what their age.
I once met a professor from Duke University at a symposium who helped me by saying that the more people refer to dementias as Alzheimers there will be more money for Alzheimers research to help my children when and if the time comes for my children. ( I hope he is right)
My husband started recognising cognitive difficulties in his late thirties while doing an MBA at the London School of Business. A super intelligent man, we discussed the difficulties of going back to do at course in one's late thirties and dismissed his fears. Things just get more difficult...right?? He started using advance technologies early on, like light bar code readers to pay as home bills and invoices, as he could not remember series of numbers and became confused by them. But as he was the highest of tech brains (in the Silicon Valley doing early work on global corporate private networks via internet) he could mask his deficiencies with technology and his extreme intelligence. (The last seven years or so he is no longer able to use the TV remote or a telephone) But in 2002, he lost his position as an executive for a large global corporation....because he was no longer able to make strategic and executive decisons. We still did not think Alzheimers...we had no idea that people so young were afflicted with the disease, we were uninformed. It took another few years for him to be diagnosed. This gap between diagnosis and being made redundant meant that he could not claim any disability from his corporation. This was a burden for our family. Massive financial changes and lifestyle. Our youngest was 11 years old and we had three other children all studying at university at the time. I was forced to take over our finances to discover unpaid tax obligations and mismanagement on the homefront. I sold our home. My husband was not a burden, the situation created by his "living with undiagnosed" Alzheimers was the burden, which has been shouldered by me, and our beautiful children.
Happily, because my husband was very bright, and had made some good plans, we have survived. I am solvent at the moment, but like others on TP have shared, I will work hard to keep him at home not only because it is where he wants to be here with me, but because it is necessary to postpone institutional living as long as possible from an economic perspective.
All the children were educated, at university level (2 doctors, a successful entrepreneur, the youngest is into the ARTS.) My husband has been present for two marriages and the birth of 4 grandchildren and a 5th due in November.
I have managed but it was a terrible shock and I was unprepared for the entire burdensome obligations I faced.
Thank God I had excellent advice from a dear physician friend at the Memory Clinic...and the wonderful support and kindness I have received from Talking Point. My friend advised me, to stay 2 steps ahead of my requirements for my husband's care. I now have a team of four people, who help me, three paid and one volunteer. I continued to work full time until I retired completely in Dec 2017. I also discovered to have CML in 2015, which has luckily been managed, but this summer my disease was active again and only in the last two weeks going back in to controlable blood readings. So, I know what it is like to live with cancer (I have cml chronic myeloid leukemia) and it is much easier than dealing with the slow drip, drip, drip Alzheimer's and loss of my friend, husband, lover and father of my children. This disease is tragic, robs families of vital members and burdens the carers with responsibilities and great saddness and resentments against institutions, organizations and individuals who want to remain removed from the reality of the what is happening or simply cannot respond to suffering we experience.
But in spite of this, I have chosen to live one day at a time and I try my best to find moments of joy in everyday. I am grateful to the fearless and honest physicians we encountered who were clear from the beginning and told us what we would be in store for and we have done our very best to deal with the information. There is no sense in trying to deny the truth, we all know that currently there is no cure and that the decline in the later stages is horrific. There is great suffering and ANGER... but for me that has lessoned with time. Acceptance is the only way to function at all. No mincing words please.

 

[jenniferpa]

@Kevinl - I do so agree with everything you said. Thank you.

 

[Sad Staffs]

@Canadian Joanne
I completely agree with you, the disease manifests differently in each individual. I used to get upset when people would say to me "OH, my mother has Alzheimers she is 90" or whatever. My husband was in his 40s. I struggled with the comparison at the time, but I now know that everyone suffers when a loved one is diminished by disease, this is painful no matter what their age.
I once met a professor from Duke University at a symposium who helped me by saying that the more people refer to dementias as Alzheimers there will be more money for Alzheimers research to help my children when and if the time comes for my children. ( I hope he is right)
My husband started recognising cognitive difficulties in his late thirties while doing an MBA at the London School of Business. A super intelligent man, we discussed the difficulties of going back to do at course in one's late thirties and dismissed his fears. Things just get more difficult...right?? He started using advance technologies early on, like light bar code readers to pay as home bills and invoices, as he could not remember series of numbers and became confused by them. But as he was the highest of tech brains (in the Silicon Valley doing early work on global corporate private networks via internet) he could mask his deficiencies with technology and his extreme intelligence. (The last seven years or so he is no longer able to use the TV remote or a telephone) But in 2002, he lost his position as an executive for a large global corporation....because he was no longer able to make strategic and executive decisons. We still did not think Alzheimers...we had no idea that people so young were afflicted with the disease, we were uninformed. It took another few years for him to be diagnosed. This gap between diagnosis and being made redundant meant that he could not claim any disability from his corporation. This was a burden for our family. Massive financial changes and lifestyle. Our youngest was 11 years old and we had three other children all studying at university at the time. I was forced to take over our finances to discover unpaid tax obligations and mismanagement on the homefront. I sold our home. My husband was not a burden, the situation created by his "living with undiagnosed" Alzheimers was the burden, which has been shouldered by me, and our beautiful children.
Happily, because my husband was very bright, and had made some good plans, we have survived. I am solvent at the moment, but like others on TP have shared, I will work hard to keep him at home not only because it is where he wants to be here with me, but because it is necessary to postpone institutional living as long as possible from an economic perspective.
All the children were educated, at university level (2 doctors, a successful entrepreneur, the youngest is into the ARTS.) My husband has been present for two marriages and the birth of 4 grandchildren and a 5th due in November.
I have managed but it was a terrible shock and I was unprepared for the entire burdensome obligations I faced.
Thank God I had excellent advice from a dear physician friend at the Memory Clinic...and the wonderful support and kindness I have received from Talking Point. My friend advised me, to stay 2 steps ahead of my requirements for my husband's care. I now have a team of four people, who help me, three paid and one volunteer. I continued to work full time until I retired completely in Dec 2017. I also discovered to have CML in 2015, which has luckily been managed, but this summer my disease was active again and only in the last two weeks going back in to controlable blood readings. So, I know what it is like to live with cancer (I have cml chronic myeloid leukemia) and it is much easier than dealing with the slow drip, drip, drip Alzheimer's and loss of my friend, husband, lover and father of my children. This disease is tragic, robs families of vital members and burdens the carers with responsibilities and great saddness and resentments against institutions, organizations and individuals who want to remain removed from the reality of the what is happening or simply cannot respond to suffering we experience.
But in spite of this, I have chosen to live one day at a time and I try my best to find moments of joy in everyday. I am grateful to the fearless and honest physicians we encountered who were clear from the beginning and told us what we would be in store for and we have done our very best to deal with the information. There is no sense in trying to deny the truth, we all know that currently there is no cure and that the decline in the later stages is horrific. There is great suffering and ANGER... but for me that has lessoned with time. Acceptance is the only way to function at all. No mincing words please.

You make me pale in comparison.
An amazing and inspiring yet distressing post. I can’t put into words what your post has done to me... I wish I could explain better how you have made me feel, but I don’t know you but I’m so proud of you.
Thank you for this post. B x

 

[Jancis]

This is such an interesting debate. I have learned so much from reading.

Returning to the original poster's concerns about language usage and whether it is correct or not, I would like to ask - does anyone have a problem with the core term dementia? It's probably too late now but I really have a huge issue with the 'D' word. From my observation it seems that it is more acceptable to say "My relative has Alzheimer's [disease]" than it is to say "My relative has Dementia". Do you agree?

If a person does not have a clear diagnosis of the cause of their dementia then I think we should refer to their illness as a neurological disorder or cognitive disorder or other term that does not contain the word dementia. The word 'Dementia' (from Latin demens = without mind) is entrenched in the mythological past. That's just my opinion but I have expressed it here before and not many members seem to agree that we should scrap the word Dementia.

And while I'm on my soapbox, I hate the abbreviations such as PWD = Person with Dementia and there are many others too. Goodness me, who needs those kinds of labels to define our loved ones who are suffering. Yes, of course, they suffer. Can they live well despite suffering? It may be possible for some but not all.

 

[kindred]

OK guys. This morning, BBC website headline


JELLY TREATS FOR DEMENTIA SUFFERERS

How's that for demeaning language???? Kindred.

 

[SerenaS]

Hi everyone,

I’m Serena and I manage Talking Point. This online community is one of many services managed by Alzheimer’s Society.

I’ve been following this discussion with interest and thought it would be helpful to share some information with you all.


Dementia friendly media and broadcast guide

When the discussion was started, @PalSal asked a question about how the new dementia-friendly media and broadcast guide came about. Just to clarify, this guide is aimed at media, but also arts and popular culture, including drama, documentaries, film and theatre.

Alzheimer’s Society asked people with dementia, people who support them and their families to share experiences about how dementia is discussed in the media. This was done in discussion groups and also via a survey on this topic. We also consulted with a number of journalists, scriptwriters and broadcast outlets. This feedback was used to help produce the guide which aims to ensure that dementia is described and portrayed accurately.

You can read more about this on this Alzheimer’s Society blog: https://blog.alzheimers.org.uk/dementia-insight/positive-language-media-guide/


Language and dementia

Alzheimer’s Society is working hard to combat the stigma that is associated with dementia and to encourage people to talk about dementia more openly.

We’ve listened to a lot of people with dementia and those who care for them, and they’ve shared a lot of experiences about how dementia is discussed and how it makes them feel.

As a response to this, we created a guide on positive language and dementia.

A key part of the guide is to support open and honest conversations about dementia, which discuss the realities of dementia and also avoid stereotyping every person with dementia or reducing everyone with dementia to a label.

The use of ‘sufferer’ to describe someone living with dementia is something that many people with dementia find difficult. Of course, a person with dementia may identify and describe themselves as a sufferer or suffering with the condition, and that is their right to do so. It is also important to recognise the suffering and difficulties that carers face, especially when their voices are often hidden in society.

The issue comes when all people with dementia are labelled in the same way. As one person with dementia told us, ‘some days I am suffering but that doesn’t mean that all I am is a sufferer and nothing more’.



How dementia is discussed on Talking Point

In 2003, Talking Point was launched by Alzheimer’s Society in order for people with dementia, carers and families to have somewhere to talk about dementia online.

Sometimes people can live well with dementia, and sometimes that isn’t the reality. Dementia can be challenging and difficult to live with. That is one of the reasons why Alzheimer’s Society has services like our National Dementia Helpline and Talking Point, and information covering all stages of dementia.

Talking Point members freely discuss all aspects of dementia - good days and bad days. This includes memory concerns, getting a diagnosis, staying active, involving professionals, arranging care and support, handling challenges, sharing practical tips, coping with emotions, legal and financial issues, medical issues, stories in the media, and discussing grief and loss.

Members are encouraged to choose an anonymous username in order to protect privacy and enable them to share their honest feelings and experiences. We also ask that members follow our rules and guidelines, which are in place to keep the community running smoothly. This includes asking members not to use language which is obscene, inflammatory (designed to provoke people) or is hateful or abusive.

Talking Point is for people with a personal connection to dementia. This means discussions can be seen by people living with dementia. We know that most members are mindful of this and will share their honest feelings in a way which also respects the dignity of people with dementia.

We hope that it never feels like Alzheimer’s Society is trying to censor your experiences. We certainly don’t intend to do that. Talking Point is here so that you can talk about all aspects of dementia.

If you have questions about this, please do contact me by emailing talkingpoint@alzheimers.org.uk


***

This discussion started with a question about Alzheimer’s Society, our guidance on language and how this applies to Talking Point. Hopefully this response helps to clarify things. As I’ve addressed that question, I’m going to close this particular discussion.

You are welcome start your own discussions on how dementia is described and discussed – our Dementia News and Campaigns forum is an excellent place for those discussions.

Best wishes,

Serena