Tag Archives: timely diagnosis

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'Reasons to be cheerful' part 4. Prof Sube Banerjee's inaugural lecture in Brighton on living well with dementia.

For me the talk was like a badly needed holiday. I joked with Kay there, a colleague of Lisa, that it felt like a (happy) wedding reception.

Unknown to me, the title of Prof Banerjee’s talk is an allusion to this famous track from 1979 (when I was five). It’s “Reasons to be cheerful (part 3)” by Ian Drury and the Blockheads.

The Inaugural Lecture – Professor Sube Banerjee (“Professor of Dementia”), ‘Dementia: Reasons to be cheerful’ was held on 26 February, 2014, 6:30 pm – 8:30 pm, at Chowen Lecture Theatre, Brighton and Sussex Medical School, Sussex Campus. BN1 9PX. Details are here on the BSMS website.

I found Prof Banerjee to be a very engaging, ‘natural’ speaker.

I arrived with hours to spare, like how the late Baroness Thatcher was alleged to have done in turning up for funerals.

Apprehensive

Brighton are very lucky to have him.

But his lecture was stellar – very humble, yet given with huge gravitas. Banerjee is one of the best lecturers of any academic rank in dementia I have ever seen in person.

Opening slide

Banerjee started off with a suitable ‘icebreaker’ joke – but the audience wasn’t at all nervous, as they all immediately warmed to him very much.

SUBE2 GENERAL

He is ‘quite a catch’. He is able to explain the complicated issues about English dementia policy in a way that is both accurate and engaging. Also, I have every confidence in his ability to attract further research funding for his various teaching and clinical initiatives in dementia for the future.

Most of all, I was particularly pleased as the narrative which he gave of English dementia policy, with regards to wellbeing, was not only accurate, but also achievable yet ambitious.

1979 was of course a big year.

SUBE1 1979

Prof Banerjee felt there were in fact many ‘reasons to be cheerful’, since Ian Drury’s remarkable track of 1979 (above), apparently issued on 20 July of that year.

Banerjee argued that the 1970s which had only given fruit to 209 papers, but things had improved ever since then.

It was the year of course Margaret Thatcher came to power on behalf of the Conservative Party.

1979 DEMENTIA

In contrast, there have already been thousands of papers in the 2000s so far.

Banerjee also argued that “what we know is more likely to be true” which is possibly also true. However, I immediately reminisced of the famous paper in Science in 1982, “The cholinergic hypothesis of geriatric memory dysfunction”. This paper, many feel, lay the groundwork for the development of cholinesterase inhibitors such as donepezil (“Aricept”, fewer than twenty years later.

It is definitely true that ‘we are better at delineating the different forms of dementia’.

I prefer to talk of the value of people with dementia, but Banerjee presented the usual patter about the economic costs of dementia. Such stats almost invariably make it onto formal grant applications to do with dementia, to set the scene of this particular societal challenge.

SUBE3 COSTS

I am of course a strong believer in this as my own PhD was in a new way to diagnose the behavioural variant of frontotemporal dementia. In this dementia, affecting mainly people in their 50s at onset, the behavioural and personality change noticed by friends and carers is quite marked. This is in contrast to a relative lack of memory of problems.

Not all dementias present with memory problems, and not all memory problems have a dementia as a root cause. I do happen to believe that this is still a major faultline in English dementia policy, which has repercussions of course for campaigns about ‘dementia awareness’.

A major drive in the national campaigns for England is targeted at destigmating persons with dementia, so that they are not subject to discrimination or prejudice.

The dementia friendship programmes have been particularly successful, and Banerjee correctly explained the global nature of the history of this initiative drive (from its “befriending” routes in Japan). Banerjee also gave an excellent example to do with language of dementia friendship in the elderly, which I had completely missed.

SUBE7 Japan friendships

Raising awareness of memory problems in dementia is though phenomenally important, as Alzheimer’s disease is currently thought to be the most prevalent form of dementia worldwide.

The prevalence of dementia may even have been falling in England in the last few decades to the success prevention of cardiovascular disease in primary care.

The interesting epidemiological question is whether this should have happened anyway. Anyway, it is certainly good news for the vascular dementias potentially.

That dementia is more than simply a global public health matter is self-evident.

I’m extremely happy Banerjee made reference to a document WHO/Alzheimers Disease International have given me permission to quote in my own book.

SUBE9 ADI

Banerjee presented a slide on the phenomenally successful public awareness campaign about memory.

SUBE12 Alz Soc campaign

Nonetheless, Banerjee did speak later passionately about the development of the Croydon memory services model for improving quality of life for persons with mild to moderate dementia.

In developing his narrative about ‘living well with dementia’, Banerjee acknowledged at the outset that the person is what matters at dementia. He specifically said it’s about what a person can do rather than what he cannot do, which is in keeping to my entire philosophy about living well with dementia.

And how do we know if what we’re doing is of any help? Banerjee has been instrumental in producing, with his research teams, acceptable and validated methods for measuring quality of life in dementia.

The DEMQOL work has been extremely helpful here, and I’m happy Banerjee made a point of signposting this interesting area of ongoing practice-oriented research work.

Banerjee of course did refer to “the usual suspects” – i.e. things you would have expected him to have spoken about, such as the National Dementia Strategy (2009) which he was instrumental in designing at the time: this strategy was called “Living well with dementia”.

SUBE4 National dementia strategy

“I’m showing you this slide BECAUSE I want YOU to realise it IS complicated”, mused Banerjee at the objectives of the current English dementia policy.

SUBE8 Dementia national strategy objectives

I asked Banerjee what he felt the appropriate ‘ingredients’ of the new strategy for dementia might be – how he would reconcile the balance between ‘cure’ and ‘care’ – “and of course, the answer is both”, he said to me wryly.

Banerjee acknowledged, which I was massively pleased about, the current ‘barriers to care’ in this jurisdiction (including the known issues about the “timely diagnosis of dementia”.

Clearly the provision at the acute end of dementia care is going to have to come under greater scrutiny.

SUBE11 Barriers to care

I increasingly have felt distinctly underwhelmed by the “medical model”, and in particular the repercussions of this medicalisation of dementia as to how grassroots supporters attempt to raise monies for dementia.

That certain antidepressants can have a lack of effect in dementia – Banerjee’s work – worries me.

That antipsychotics can have a dangerous and destructive effect for persons with dementia – also Banerjee’s work – also clearly worries me.

I am of course very proud that Prof Alistair Burns is currently reading my book focused on the interaction between the person and the environment in dementia.

Alistair Burns Shibley Rahman email

And of course I’m ecstatic that Lisa Rodrigues and Prof Sube Banerjee signed my book : a real honour for me.

book photo

I signed Lisa’s book which was most likely not as exciting for her! X

There was a great atmosphere afterwards: the little chocolate brownies were outstanding!

Being an antisocial bastard, I didn’t mingle.

Mingle

BUT I had a brilliant chat with Lucy Jane Marsters (@lucyjmarsters) who gave me a little bag of ‘Dementia is my business’ badges, very thoughtfully.

SUBE 13 Badges

We both spoke about Charmaine Hardy. Charmaine was missed (and was at home, devoted to G.)

I’ve always felt that Charmaine is a top member of our community.

This apparently is a ‘Delphinium’.

Delphinium

A reason not to be cheerful was leaving Brighton, for many personal reasons for me.

Upset to be leaving

Not even the Shard was a ‘reason to be cheerful’, particularly.

The Shard

But when I came back, I found out that ‘Living well with dementia’ is to be a core part of the new English dementia policy.

I have, of course, just published a whole book about it.

The photograph of the poppy was of course taken by Charmaine Hardy: I have such great feedback on that one poppy in particular!

Book cover

And what does the future hold?

Over to Prof Banerjee…

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I loved this comment by Prof Steve Iliffe regarding the timely diagnosis of dementia

I loved this letter by Prof Steve Iliffe.

It captures a lot of the issues I worry about.

I don’t have particularly strong views either way about the diagnosis rates of dementia in England, other than the fact I am mindful that some people wait unacceptably for years before they are formally diagnosed.

This is a concern that some persons with dementia may not wish to have a diagnosis of dementia.

There is some evidence to support this in fact, because of the documented delay in times for people to seek medical help.

There is still unquestionably a stigma for a person receiving a diagnosis of dementia, which is a huge life-changing event for the person involved and those closest to him or her.

GPs are brilliant professionals. My late father was one for about 25 years in fact.

However, some may be mutually colluding with persons who don’t wish to receive a formal diagnosis of dementia, in that either party may prefer to attribute memory problems to ‘normal ageing’.

We do run the risk of pathologising memory problems. Already, receipt of a diagnosis of dementia takes you down a medicalisation pathway as Prof Iliffe states. Pathologising ageing is problematic for very obvious reasons.

I also think this letter touches upon a number of ‘misunderstandings’ of dementia care.

Just because the medications for memory and attention aren’t that successful for many, there’s a huge danger that people are left with the impression that nothing can be done.

Much can be done to improve living well with dementia, including addressing the needs of a person as well as optimising the design of the immediate and built environments.

I must admit that I am biased towards the ‘care’ end of making sure care homes are properly affordable, and something to be proud about. I think that preserving the dignity of a person who happens to be living independently well with dementia, such that he or she exerts control and choice, is a perfectly reasonably one.

I am reproducing Prof Iliffe’s letter below, with kind permission of Prof Iliffe whom I caught briefly at lunchtime today.

The original publication of the letter is here.

___________

Martin Brunet (Rapid response 31st October) adds an important point to the timely and perceptive critique of dementia policy and practice by Le Couteur and colleagues (1). The apparent under-diagnosis of dementia in general practice is presented as a problem needing urgent solution. In my experience few are interested in why diagnoses rates are low. Contrary to the rule of no intervention without a diagnosis, remedies and targets are proposed and pursued energetically.

I suggest eight reasons why there is a diagnostic gap. Changes in thinking, memory and behaviour are not recognised as significant by the individual experiencing them, or by those around them, who may normalise changes as being part of ageing, due to life events or expressions of the personality. Symptomatic individuals may not accept that anything is wrong and resist further investigation. General practitioners may misattribute changes to ageing, well beyond the point of plausibility. General practitioners may protect symptomatic patients from a stigmatising diagnostic label which could place them on an escalator into disability; in doing so they will protect themselves from the consequences of mislabelling. General practitioners who believe that there are few resources to support their patients with dementia may be slow to diagnose. In some patients diagnosis may appear to make no difference to care, or may perversely worsen it by blocking access to rehabilitation or threatening residency in a care home. Memory clinics may have long waiting lists, which lengthen as demand increases. And finally, a formal diagnosis may be made by a specialist but not get recorded in a way that is captured for the Quality & Outcomes Framework reporting.

Different combinations of these (and other) factors may occur in different contexts, making local understanding important. This is not necessarily how the NHS works. The over-emphasis on diagnosis may divert resources away from much-needed community services, in another turn of the Inverse Care Law. Sceptical GPs will be vindicated if low-level support for patients early in the disease course, or palliative care for those at the end of life, fail to meet their needs whilst memory clinics seek extra funding to deal with their backlogs.

(1) LeCouteur DG, Doust J, Creasey H, Brayne C Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis BMJ 2013;347:f5125

 

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