The Nuffield Council on Bioethics

[Brucie]

My attention was drawn today to The Nuffield Council on Bioethics and their consultation paper on dementia.

I had not heard about this before as it is hot off the presses, but it looks very interesting indeed:


http://www.nuffieldbioethics.org/go/ourwork/dementia/page_922.html [amended]

I will certainly send them my views and I am sure that other members of Talking Point will want to do the same.

 

[Skye]

Bruce, the link doesn't work.

 

[Margarita]

Is this it Bruce ?

http://www.nuffieldbioethics.org/go/ourwork/bioinformationuse/pressrelease_481.html

 

[Sandy]

Try these:

http://news.bbc.co.uk/1/hi/health/7398852.stm

http://www.nuffieldbioethics.org/go/ourwork/dementia/page_922.html

Take care,

Sandy

 

[Skye]

Thanks Sandy.

I'm particularly interested in this because (all being well with John) I'm going to a seminar on Medical Ethics on Saturday. Not directly related to dementia, but I expect I'll manage to put my oar in!

 

[Brucie]

The particular pages were hot news so I think they changed the address between my posting and people reading!

Anyway the threads above all work. [except mine]

 

[Grannie G]

It worked for me.

 

[Skye]

'Cos Bruce has amended it!

 

[Brucie]

Well, the report from this consultation has just popped through my door.

Good work, Hazel - you are quoted in it!

The report is a long one and I have just quickly eyeballed the area on carers' needs, but it looks very interesting overall.

Anyone can download the report from http://www.nuffieldbioethics.org/go/ourwork/dementia/publication_530.html

Alzheimer's Society has already commented http://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=543

 

[TinaT]

Nuffied report

What an interesting report. I found that the ethical questions about how society supports people with dementia, and how it prioritises various forms of research into dementia to be of the most interest for me as a carer of a dementia sufferer.

I welcome the fact that it was a report entitled DEMENTIA – not Alzheimer’s disease - and the introduction which lays out exactly the group of symptoms which make up the spectrum of dementia and that dementia is not simply related to old age. My husband was in his mid fifties when he developed LBD and at that time I had many problems related to the fact that because he was under the age of 65, many helpful services, including initial diagnosis was not immediately offered to us.

(The use of the word Alzheimer, especially in the title of such a prominent organisation as the AZ Society, has channeled, coloured and dominated public thinking into only one form of dementia for so long. I appreciate all that the AZ Society do for sufferers of dementia but hate the fact that the name only relates to one form of dementia. )

I also welcome section 1.7 which suggests that medication alongside practical help in the home and assistive technologies are needed if dementia sufferers are to be truly assisted to live as normal a life as possible. This I would link with section 1.31 where it is suggested that as research has not produced a cure, that maximizing the quality of life of those who currently have dementia is of paramount importance.

At the present time half the economic costs of caring for dementia are paid for by relatives! This is truly a staggering figure when considered alongside fully state funded care for other diseases in our society. As the economic noose tightens around our Local Authorities, I cannot see the financial help which will be needed if we, as a society, are to offer the practical help and assistive technologies. Who will pay for these when family carers already carry such a high burden of the costs?

I only wish that the report will be acted on, and acted on quickly as such a report is long overdue. Sadly, I do not think things will change because successive Governments have evaded the economic issues of implementing better research and care of dementia and I do not see that changing in the current economic climate.

xxTinaT

 

[Skye]

Thanks Bruce. An excellent report, which seems to cover all the areas we worry about. Wouldn't it be wonderful if a magic wand could make it all normal practice everywhere?

There are many passages I want to copy & keep, this is one I particularly like from page 40:

3.7 More recently, it has been argued that a palliative care approach would best support people with dementia. While for many, ‘palliative’ care is perceived as care at the very end of life, international definitions emphasise its applicability from the moment when a person is diagnosed with a lifethreatening illness. The World Health Organization, for example, defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”124 The emphasis placed in palliative care on treating the ‘whole’ person, not only their physical pain or difficulties, but also their mental, social and spiritual needs, is clearly relevant in the care of people with dementia, as is the emphasis that care should extend beyond the person with the illness to their family.

(my highlighting)

I'm going to email the link to our lead consultant.