Dementia advert on TV

[WJG]

Gosh, but I get tired of the 'living well with dementia' line, as if this is some kind of nice illness I can quietly forget about on a good day. No it isn't. It's horrid. It's robbed me of enjoyment and activity, it's robbed my sons of the person I once was. I've already been told not to be morbid when I point out that my condition is both bound to get worse and will be terminal . I honestly don't understand what's wrong with saying that: it is a fact. Perhaps for too long we've painted Alzheimer's as something vaguely amusing that happens to the doddery old, rather than talked of a physical illness that destroys personalities and lives.

 

[kindred]

Gosh, but I get tired of the 'living well with dementia' line, as if this is some kind of nice illness I can quietly forget about on a good day. No it isn't. It's horrid. It's robbed me of enjoyment and activity, it's robbed my sons of the person I once was. I've already been told not to be morbid when I point out that my condition is both bound to get worse and will be terminal . I honestly don't understand what's wrong with saying that: it is a fact. Perhaps for too long we've painted Alzheimer's as something vaguely amusing that happens to the doddery old, rather than talked of a physical illness that destroys personalities and lives.

Totally with you, maybe we should call it what it is, progressive brain damage, that would underline the physical illness nature of it.
Warmest, Kindred

 

[WJG]

Totally with you, maybe we should call it what it is, progressive brain damage, that would underline the physical illness nature of it.
Warmest, Kindred

Personally I dislike the term 'dementia', both because it conjures up the idea of the 'demented' but also because there are many of us with neuro degenerative illnesses that are not technically at a stage of dementia. I have to say, I think 'progressive brain disease' is a pretty good idea.

 

[lollyc]

I'm afraid, personally, we are totally failing to 'live well' with dementia. In fact I think this image does nothing to help carers, many of whom already feel they are hopelessly inadequate.
I don't think I'm being negative. I'm being realistic.

Forgive me @Countryboy , but your experience is not what many of us here are dealing with. My mother developed dementia in the space of 6 weeks, following delirium. She had no symptoms before this, and almost overnight became completely unable to function independently. She could not cook, boil a kettle, use a toaster, lock a door, use a phone, work the TV or radio, remember her address (of 15 years) etc., etc.This was not a gradual decline, with a minor impact on her life (and her family), this was catastrophic. And we have had 4 years of this - with no hope of treatment or remission, just a relentless decline with no end in sight.
Dementia will never be properly funded until / unless there is more understanding of the true impact it has on both the sufferer (and my mother does suffer) and their loved ones.

 

[nitram]

I think 'progressive brain disease' is a pretty good idea.

As in this Alzheimer's Research fund raising advert a few years ago?

#sharetheorange

This orange has the power to change perceptions of dementia. But it all starts with you. Watch our video featuring Christopher Eccleston to find out how...

www.facebook.com

 

[PeteMid]

It's a huge dilemma. I posted on someone's thread the other day: 'dementia is terminal. It gets worse and worse and then you die.' It's a truth we all know yet I felt terrible writing it for fear of causing upset.

But I don't think a lot of people realise it is both progressive and terminal. The AS have been promoting this 'living well with dementia' slogan for so long now that I think people see dementia as something like having a bad back - yes, it's annoying and inconvenient but you just accept it, live with it and otherwise get on with your life.

No. Dementia kills you. That's why it says 'dementia' on my mother's death certificate. No one survives dementia, no one recovers from it. Ever.

So on balance, I'd say telling the truth is preferable.

Well said. I have young onset Alzheimers and I am under no illusions.
I fully support this hard-hitting campaign. As we come out of lockdown, charities will need all of the support that they can get to function properly, and raising awareness is vital.

 

[Palerider]

I think we can only wrap this condition called dementia up in cotton wool for so long. Ultimately this is about human suffering with a disease that has no cure and can rapidly deteriorate to the point of death. Inbetween that are various stages of ever increasing loss. I don't think telling the puclic that dementia is a soft disease is at all appropriate and in fact it just buries the real issues many of us face with a disease that is multi complex. Demetia kills people and it is a disease that is life limiting and has a terminal stage. Anyone on here can paint that picture how they like, but the reality will never go away.

I often have health professional colleagues that ask me about mum, the reality is they have no idea about the disease or how it progresses, because essentially they don't have to deal with it 24/7.

As for it being upsetting for those with awareness of their dementia, I would argue that it is not the advert that is the problem but either the dementia is preventing acceptance or the person cannot get past the intial state of grief of their condition.

No one wants anyone to be upset by a truth, but the wider issues here as others have said is that the public don't understand this disease and its too easy to pass it off in the human conscience as something other -rather than face the reality that this disease brings.

 

[Frank24]

I haven't seen it yet but dad had dementia and cancer which were both terminal. He had some palliative treatment for the cancer but we knew the dementia would just get worse and he would die anyway. It's very sad but dad never knew he had either disease. He forgot immediately but he knew that his sister had had dementia and he didn't ever want to end up like her.

❤️ Tough x

 

[DennyD]

It's a huge dilemma. I posted on someone's thread the other day: 'dementia is terminal. It gets worse and worse and then you die.' It's a truth we all know yet I felt terrible writing it for fear of causing upset.

But I don't think a lot of people realise it is both progressive and terminal. The AS have been promoting this 'living well with dementia' slogan for so long now that I think people see dementia as something like having a bad back - yes, it's annoying and inconvenient but you just accept it, live with it and otherwise get on with your life.

No. Dementia kills you. That's why it says 'dementia' on my mother's death certificate. No one survives dementia, no one recovers from it. Ever.

So on balance, I'd say telling the truth is preferable.

I agree, especially your comment about 'living well with dementia', this can indeed give the impression that it is a illness that is manageable. It is but only for a limited time and that limited time needs to be treasured. My husband knew and understood the consequences of being diagnosed with a dementia related illness. For him it was important to know, he needed to be involved in making decisions and express his wishes while he still could and how it would impact our marriage. As you say the truth is important, people need to be able to make informed choices about their lives. After all, we hear those providing the caring services as well as the medical professionals involved saying that 'we want to do what is best for . . . . ', this to me means involving the one concerned when they are still able to.

It is a very sensitive and emotional discussion to have and I respect people's individual opinions and approaches to handling the issues.

 

[WJG]

I guess the issue is that different messages might be needed for different folk. I understand why people want me to try 'living well with dementia' ( whilst noting here that whilst I undoubtedly have Alzheimer's Disease I don't have dementia). I don't really want to live badly .
But the wider message to the public is all over the place. It seems that we tip toe around the reality of progressive illness - and we pay the literal cost of doing this in terms of less money being spent on research than for other terminal illnesses. This is perhaps a function of Dementia being age related. Most of us know of people in their prime who have had cancer, or who have died from it. So the risk is real, and scary. But dementia is hidden away in isolation, and primarily affects the elderly (who are, of course, going to die anyway).
I am 68, and I feel increasingly a moral obligation to talk about this illness. I am dismayed by the ignorance shown by otherwise well educated folk.

?

 

[PeteMid]

I guess the issue is that different messages might be needed for different folk. I understand why people want me to try 'living well with dementia' ( whilst noting here that whilst I undoubtedly have Alzheimer's Disease I don't have dementia). I don't really want to live badly .

?

But you DO have dementia WJG. Alzheimer's disease is one of the group of conditions that fall under the dementia umbrella.

 

[jennifer1967]

i think a lot of the professionals dont have the knowledge or interest to find out about dementia. in my opinion, they are the ones that make the most clangers about different dementias as well as the brick wall of capacity which totally floors them. i dont know that there is much training and emphasis put on dementia in proportion to cancers, cardiac etc

 

[canary]

My husband knew and understood the consequences of being diagnosed with a dementia related illness. For him it was important to know, he needed to be involved in making decisions and express his wishes while he still could and how it would impact our marriage. As you say the truth is important, people need to be able to make informed choices about their lives. After all, we hear those providing the caring services as well as the medical professionals involved saying that 'we want to do what is best for . . . . ', this to me means involving the one concerned when they are still able to.

The trouble is that many people with dementia are not diagnosed until after this time. My mum was one - by the time she was diagnosed she had no idea that she had anything wrong with her. At the beginning, when it would have been important to her to express her wishes, neither she nor I realised that she had dementia and that time was lost.

 

[Countryboy]

You can call Dementia / Mental illness what you want Alzheimer's Disease , Frontotemporal Dementia (FTD), Vascular Dementia, Dementia With Lewy Bodies (DLB), Mixed Dementia

giving it a name It doesn’t count for anything when you dealing with bureaucrats work for various organisations from Banks to DVLA once they know of you medical condition they will assume your like they read about in the media or see in a TV adverts or documentary and will then think you’re not (a) capable (B) unable to think for yourself (C) make your own decisions and so on How further from the Truth or misguided could they be but it’s all that Negativity written or spoken about a Mental Illness effects individuals in different ways ok some factor maybe age related but bureaucrats can’t assume were all the same Personally I couldn’t care less what they call me because my brain is still active enough they won’t find me an easy target I’m strong enough mentally and physically to fight my corner dementia or not I’m old school don’t take no prisoner’s

 

[jennifer1967]

You can call Dementia / Mental illness what you want Alzheimer's Disease , Frontotemporal Dementia (FTD), Vascular Dementia, Dementia With Lewy Bodies (DLB), Mixed Dementia

giving it a name It doesn’t count for anything when you dealing with bureaucrats work for various organisations from Banks to DVLA once they know of you medical condition they will assume your like they read about in the media or see in a TV adverts or documentary and will then think you’re not (a) capable (B) unable to think for yourself (C) make your own decisions and so on How further from the Truth or misguided could they be but it’s all that Negativity written or spoken about a Mental Illness effects individuals in different ways ok some factor maybe age related but bureaucrats can’t assume were all the same Personally I couldn’t care less what they call me because my brain is still active enough they won’t find me an easy target I’m strong enough mentally and physically to fight my corner dementia or not I’m old school don’t take no prisoner’s

i dont consider mental illness the same as dementia. i think they are very different in presentation and behaviour. with dementia, it involves the brain cells whichever way are being damaged or died be it plaques, proteins or reduced oxygen levels where as mental illness tends to be chenicals in the brain with the deficiency or imbalanced of them.

 

[Countryboy]

i dont consider mental illness the same as dementia. i think they are very different in presentation and behaviour. with dementia, it involves the brain cells whichever way are being damaged or died be it plaques, proteins or reduced oxygen levels where as mental illness tends to be chenicals in the brain with the deficiency or imbalanced of them.

Hi jennifer 1967 first its good to have discussions and note difference’s in treatments ect.

as I said previously on all matters of dementia I can only talk about on my own personal own experience’s and treatment’s of being diagnosed with dementia myself and only mine. now regards the Mental Illness is or isn’t different than dementia all I can say all my Tests and Consultations were carried out at NHS Mental Health Unit see appointment attached ok its 2003 obviously this may not be the same through the UK but as I said I can only talk about my Mental Health appointments.

 

[jennifer1967]

Hi jennifer 1967 first its good to have discussions and note difference’s in treatments ect.

as I said previously on all matters of dementia I can only talk about on my own personal own experience’s and treatment’s of being diagnosed with dementia myself and only mine. now regards the Mental Illness is or isn’t different than dementia all I can say all my Tests and Consultations were carried out at NHS Mental Health Unit see appointment attached ok its 2003 obviously this may not be the same through the UK but as I said I can only talk about my Mental Health appointments.

yes good to have discussion, ive googled it and no alzheimers is not a mental health illness but a disease of the brain. i have moderate/severe depression and anxiety but that doesnt mean i have dementia but a chemical imbalance of the brain. i think it was just a venue for appts. my husband went to the neurological dept to have his scans etc. an interesting question though

 

[Countryboy]

yes good to have discussion, ive googled it and no alzheimers is not a mental health illness but a disease of the brain. i have moderate/severe depression and anxiety but that doesnt mean i have dementia but a chemical imbalance of the brain. i think it was just a venue for appts. my husband went to the neurological dept to have his scans etc. an interesting question though

well on my GP surgery records it say’s I have Alzheimer’s , On my Mental Unit records it says I have Frontal-lobe-dementia, I recently bee in to hospital for surgery On my NHS Hospital Record it says I have Dementia { so I just tell people I’m nuts or I’m crackers } they can call me anything so long as the dont ask for cash then I tell them to OFF or please go away

 

[nitram]

i dont consider mental illness the same as dementia

I use a malfunctioning computer as an analogy
Mental illness - defective firmware/software
Dementia - defective hardware

 

[Palerider]

I use a malfunctioning computer as an analogy
Mental illness - defective firmware/software
Dementia - defective hardware

I like that