This post is about ageing and memory.
This is naturally a complex subject and any attempt to simplify it can only be misguided.
I have thus decided in this post to present a pattern. A pattern of images. My intention is to keep my words to a minimum and let the pattern of others spell out a bigger picture.
My career has been in two “fields”: Medicine and Landscape Architecture. It is my experience that this has helped me to re-consider boundaries, or to continue the metaphor, fences.
My study at Edinburgh University in Landscape Architecture, where I gained the Scottish Chapter Prize, encouraged me to look first at the big picture: to see the pattern first.
Alexander McCall-Smith recommended this book to me. It is called “A Pattern Language” and it was published in 1977. It is a wonderful book. My view is that the medical profession could do with an equivalent!
However the title of this blog-post comes from a book only just published. That book is “The Nostalgia Factory” by Douwe Draaisma. My view is that this is a book that all those involved in dementia policy might consider reading. That along with “Reckoning with Risk” by Gerd Gigerenzer and “The Patient Paradox” by Dr Margaret McCartney.
I must point out that this blog-post is not about those progressive dementias starting at a younger age. This post considers our elders in their latter years
With my introduction made, it is time to present the pattern. See what you make of it?
The slide below is what the media tells us everyday. Our “awareness” has been raised!:
In December 2012, Dr Des Spence said this:
HEAT target 4. A target based on “early diagnosis”. As a practising NHS doctor I found harmful consequences emerged from this target. This was the beginnings of a “pattern”:
Let us all stop and remind ourselves of the Internationally agreed definition of “Dementia”. A definition which is based on “significant” impairments “across a range of brain functions” [ICD 10, DSMIV]:
Why have we lost sight of this scientific, indisputable truth?:
The “evidence” from Scotland to this APPG Group, submitted by Dr Peter Connelly and Geoff Huggins was based on “early diagnosis” and HEAT target 4. It is worth reading in its entirety. But if you do not have time, you can watch this film: “How to improve diagnosis rates in the UK”
Back in December 2012, Jeremy Hunt, Minister for Health, met with the pharmaceutical giant Lilly. This was about dementia and early diagnosis:
“Cash for dementia” policy. Did it have roots in this sponsored “Think Tank”?
I share Douwe Draaisma’s concern about the stigmatisation of ageing:
The MMSE (a rating-scale based out of 30) is rarely used today in NHS. This followed copyright law. I personally do not regard rating scales as “weapons” but I fundamentally agree with the author that they need to be used far more carefully and (only ever) as part of the overall assessment. An assessment that must be based on consent and, if agreed, followed through in time:
I disagree that “case-finding” or “detection” are different from screening. I fully admit to being a stuck-record on this. Thankfully the World Health Organisation agree with me:
There is a lot of “confusion” around. I have been published in the British Medical Journal stating my experience, that such confusion is not confined to old age:
I am of the view that fear is easily marketed. This was sent to me directly by LIlly. But Lilly are not alone in fear-mongering:
Lilly, Pharmaceutical giant, cite Alzheimer’s Society. As a charity we all trust what the charity says. Here are the published words of Chief Executive Officer of Alzheimer’s Society (August 2013):
Within months of the above statement (which actually does not accord with what NICE recommends), the Alzheimer’s Society say this:
What a muddle! This returns my thoughts to the persisting muddle between early diagnosis and timely diagnosis:
The selling of forgetfulness. The risk is that “inverse-care” becomes a reality. That we are “treating” so much ageing that those living with dementia struggle to get the care that they might need. The BMJ have a campaign called “Too much medicine” for this very reason:
How much of medical “education” is based on marketing? I have been looking at this very question in NHS Scotland:
How good is Beta-amyloid as a biomarker for “Alzheimer’s disease”? The evidence-based answer is not very:
Here are the words of Prof Clive Ballard in the Lancet. Prof Ballard is the expert that I recently debated with on “early diagnosis” for a Royal College of Psychiatry Conference. Prof Ballard supported the motion “This house supports the early detection of dementia”. The motion was defeated:
Open question: who is not “aware” of “Alzheimer’s” or dementia as it has synonymously become misunderstood?:
I am not so sure it is just the media that get the “headlines” wrong. This reminder, from Alzheimer’s Research UK was recently included with my Sunday papers:
I agree with Prof June Andrews about the muddle. I tweeted her to say so. My worry is that this “muddle” is not just “post-mortem” but is a muddle that we should all concern ourselves with now.
We need to better care for those with dementia and improve research, but in my opinion, simply pathologising all of ageing is not the way. Such an approach misses the pattern of time.
The words below are by Douwe Draaisma. I think these are words increasingly lost sight off (despite a very clear, and well established evidence-base):
In Scotland we are now a few years on from an incentivised, target-based approach to early diagnosis of dementia. In NHS England this is all new. It is the news, and has been termed “cash for diagnosis”:
‘Cash for diagnosis’ dementia scheme
Dr Martin McShane, NHS England’s national clinical director for people with long-term-conditions said: ‘This survey captures the views of a small number of GPs, but we know we have a lot of support from the GP community who agree early diagnosis is beneficial. This is a voluntary scheme so GPs do not have to sign up if they do not want to. However, we are still encouraging all GPs to make early diagnosis where appropriate.’
Simon Stevens, Radio 4, 9.20am, 23rd October 2014
“in order to do that there are sometimes extra costs for GPs going about that kind of screening and diagnosis that’s what this is aiming to help”
An Open Letter to Simon Stevens, NHS Chief executive, and Alistair Burns, National Clinical Lead for Dementia.
Dear Mr Stevens and Prof Burns,
We are writing to voice serious concerns regarding the new Dementia Identification Scheme for GPs whereby GPs are to be paid £55 on the basis of each additional diagnosis of dementia made before the end of March.
Helping people affected by dementia to achieve a diagnosis is a very worthwhile goal, but the means of achieving this must have a sound ethical basis. The introduction of a financial incentive to the making of a diagnosis has broken new ground in the national GP contract, and set a dangerous precedent which needs to be urgently reconsidered.
The diagnostic process is unique in the doctor-patient relationship due to the fact that the patient has to trust the doctor’s judgment. It is extremely difficult for a patient to challenge their diagnosis; they are unable to ‘opt out’ or be ‘exception reported’ from a diagnostic label as they are with other incentive schemes, such as the Quality and Outcomes Framework, or a screening programme. There must, therefore, be absolute surety that the doctor has no other motivation than the patient’s best interests when they make a diagnosis. A direct financial payment like this undermines this confidence, and with it the basis of trust inherent in the doctor-patient relationship.
Patients who may have dementia are particularly vulnerable, owing to the nature of an illness that causes cognitive difficulties, and the diagnosis is a subjective, clinical assessment, meaning that misdiagnosis is a very real possibility. To be given a diagnosis of dementia is challenging when the diagnosis is correct, but to receive such a label incorrectly can have truly tragic consequences.
This scheme may have good intentions, but it has crossed a line that should never be crossed, and contravenes good medical practice. The reaction of the general public to the story is a demonstration of the widespread concern that the policy is unethical, and we ask for it to be withdrawn without delay.
Dr Martin Brunet signed this letter with almost fifty others. I was one of them. The slide below returns my thoughts to Dr Martin Brunet:
At the recent Alzheimer’s Europe Conference, Geoff Huggins, former Head of mental Health for the Scottish Government, concluded with words that we all would support: “Be Heard”.
My worry (and I am a worrier) is that our oldest generation are least likely of all to be heard.