Breaking news ......

[Tender Face]

My husband has just alerted me to the fact that this feature is an article of 'breaking news' on a satelite TV channel news programme ......

http://news.bbc.co.uk/1/hi/health/6929482.stm

Just me being touchy.... (as per ) .....but I don't like the use of the word 'burden' and the context in which it is used .......

As with the Pointon 'discussions' - is all publicity 'good' publicity?

I do hope eventually it will all achieve a greater good. A difficult week for those who's lives are affected by the media spotlight in different ways this week ......

Thinking of all who may be affected, Love, Karen (TF), x

 

[DickG]

Karen

Thanks for the pointer to good news. To highlight what some of us already know is a positive step but the proof of the pudding.....

I will accept the use of the word "burden" and anything else as long as it benefits us carers and our loved ones. Would the Disability Discrimination Act come into force if there had been no upsetting images of the disabled? I am lucky to be born with a thick skin and am prepared to put up with a lot for the greater good.

Love

Dick

 

[Brucie]

Hi Karen

I appreciate all our sensitivities in these issues and the way they are worded, but I just checked the definition of burden at http://www.answers.com/topic/burden?cat=biz-fin

includes:

Something that is emotionally difficult to bear.
A source of great worry or stress; weight:
A responsibility or duty:

I accept all these in this context.

I do appreciate that common usage may sometimes differ...

 

[connie]

Have to say I agree with you Dick:

and am prepared to put up with a lot for the greater good.

My skin is not particulaly thick, but my Lionel means so much to me.

My knowledge of him, as a person, and insight into AD gleaned from all sorts of sources, is enabling me to help in keeping him calm and comfortable.

 

[Skye]

The article is about the 'spiralling burden of Alzheimer's on society'. I don't think any of us could argue with that. It is a huge burden on NHS and Social Services resources, and if that message gets through, more funds may be made available for research and treatment.

Nowhere does it refer to individual sufferers as a burden to their carers. I'd be the first to protest at that.

 

[Norman]

I think the article is good newa.
We must bang the drum at every chance that we get,I will.
Norman

 

[Tender Face]

Maybe I don't like someone - anyone - being reduced to a statistic - and the cost of their care when they are vulnerable being expressed in monetary terms ..... and a cost to 'society'??? The one that turns its back??????

Those who know me - some more than others - know I have a passion for child welfare - a group of people who have rights, but no means to exercise it for themselves .... no income to control for themselves .... no voice to be heard unless their carers or dedicated professionals speak up ...... . at times I see little difference with dementia sufferers ..... except chidren are not seen as a burden to society although their 'rights' and their vulnerabilities are little different from those we all care for - or know of - through dementia - at whatever age ....

Because people are adults does not deny them vulnerability, nor to be stereo-typed as a 'burden' - in fact, more importantly ... adults who become vulnerable have had chance to contribute in some way to society in a way in children have not been allowed to gift their promise to us ...

I ask only for respect for those who have already given .... while we invest (and rightly) in those who have yet to give ......

I agree Dick, that this is great and good news, but I would ask that those directly affected are treated with the respect they deserve for living the reality and not the language which befits the theory of economists .......

Karen, x

 

[Skye]

I ask only for respect for those who have already given .... while we invest (and rightly) in those who have yet to give ......

I ask for much more than that. I demand respect and investment.

 

[Brucie]

Big thanks to Karen for surfacing the piece, which contains some good facts - though the way they are couched is not good, and leads to wrong interpretation.

The current system is failing too many dementia sufferers and their carers.

He said there were three key areas - disease awareness, early diagnosis and high quality treatment - where improvements had to be made

Nearly two-thirds of people with dementia live in the community, cared for by some 476,000 unpaid friends or relatives.

But £5.2 billion of the informal care costs and 30% of the £5.8 billion of care home costs are borne by families

There are currently no treatments that can prevent or cure dementia, although there are some therapies that can delay the progression of symptoms

.. tell that to Nice..!

in terms of the percentage of suitable patients receiving these anti-dementia drugs, UK performance is in the bottom third in Europe

OK so the government understands. Now tell Nice

the average reported time to diagnose the disease in the UK is also up to twice as long as in some countries

Things not defined well

There are 560,000 people with dementia in England, each costing the economy £25,391 every year.

I'm guessing they are not including the opportunity costs - spouses and family members stopping paid work - losing money to the family and to the tax system; the costs to the NHS of the treatment of carers, necessary because of the strain of the role; costs of broken families because of the stress etc etc

to defend the article, it does not categorise the people who have dementia as a burden, rather the dementia itself.

 

[daughter]

What has happened to the BBC News delivery?

You could try reading this article instead:

http://www.gnn.gov.uk/environment/fullDetail.asp?ReleaseID=305344&NewsAreaID=2

 

[Skye]

The Government is to produce the first ever national dementia strategy in response to one of the great challenges now facing society.

Speaking during a visit to a mental health centre for older people in North Kensington, Care Services Minister Ivan Lewis said:

"The scale of our ambition must now meet the scale of the challenge as demographic realities mean dementia will impact on an increasing number of families in our society. The current system is failing too many dementia sufferers and their carers".

"I am determined that this disease is brought out of the shadows. We need to minimise the shame and fear associated with dementia so that people and their relatives feel able to seek support at the earliest possible stage in the knowledge they will get expert help and be treated with dignity and respect."

Thanks for that link, Hazel. Let's hope it's not just another press release that fizzles out.

It's certainly a hopeful sign.

 

[elaineo2]

Burden on society

Sorry if anyone disagrees with me but I don't see Alzheimers/Dementia as a burden.I see it as a disease that has no cure.A disease that can tear sufferers and their families to pieces.I have had a few family members pass away from the dreaded cancer.Is this cancer not a burden on society then?some develop it for no particular reason,others through sunbeds,smoking etc.Yet cancer is treated without an eyelash batted.Alzheimers/Dementia is treated with contempt by NICE.Sorry no offence intended to anyone the word BURDEN got my goat alittle bit.love elainex

 

[Ashburton]

Sorry if anyone disagrees with me but I don't see Alzheimers/Dementia as a burden.I see it as a disease that has no cure.A disease that can tear sufferers and their families to pieces.I have had a few family members pass away from the dreaded cancer.Is this cancer not a burden on society then?some develop it for no particular reason,others through sunbeds,smoking etc.Yet cancer is treated without an eyelash batted.Alzheimers/Dementia is treated with contempt by NICE.Sorry no offence intended to anyone the word BURDEN got my goat alittle bit.love elainex

Have to say agree with you, AD has a very low profile.As you said Cancer etc is treated completely differently. AD is underfunded imo and carers receive no official recognition.

 

[noelphobic]

to be fair, there are treatments for conditions other than dementia that NICE will not agree to - and some cancer treatments are included in that.

 

[Lonestray]

Burden

Well put Karen, couldn't have put it better. You don't have to be told you're a burden to society once your over a certain age. It doesn't feel inclusive. Your like the kid who's sent out for an ice cream and when you return home only to find a 'Sold' sign outside and family gone!
Padraig

 

[Nebiroth]

so that people and their relatives feel able to seek support at the earliest possible stage in the knowledge they will get expert help and be treated with dignity and respect

Hah. Presumeably that includes being told "so sorry, there are drugs that could help, but you're not sick enough to get those because they cost more than looking after you without them does at this point in your illness"