Diagnosis

You need to ask the right questions to get the right answers

Shibley Rahman 1 Comment
Idea concept with row of light bulbs and glowing bulb

Idea concept with row of light bulbs and glowing bulb

I think the worst aspect of the term ‘innovation’ is the term itself. For me, it more often than not conjures images of gimmicks and the snake oil salesmen of these gimmicks.

But there’s a certainly a place for ways in which people can be motivated to take an interest in his or her own health. There needs to be, nonetheless, an informed debate; for example, a healthy “health check” is no guarantee that you won’t succumb to some malady within a few years time.

I’ve known people to run a full distance on a cardiac treadmill in a hospital, with no monitored changes in heart function, only to drop dead seconds later in the hospital car park.

Nonetheless, most definitions of innovations are quite broad, and are generally doing things differently or doing different things.

It’s often said by physicians that the vast majority of a reliable diagnosis can be taken from a good history of symptoms. That I believe to be supremely the case for dementia.

I am not going to bombard you with the predicted million people living with dementia in the UK, as quite frankly if it’s your mum living with dementia that should be good enough for you to take an interest.

The question, “Have you had trouble with your memory?”, is likely to engender a lot of false positive responses as a diagnostic screening tool for dementia. A better one would be possibly, “Have you had trouble with memory but feel that your mood has been quite good?” But even this question would not be ‘fool proof’ as people can live with both dementia and depression.

There is a good ‘push’ argument against supporting a status quo in the current approach to dementia. That is, it is overly reliant on a medication solution, when the vast majority of drug research work in this area has resulted in failure. This ‘promissory hope’, of “one last push”, is needed to keep the general public engaged with this mission, and certainly helps the surpluses and profits in the short term.

Indeed, many of the arguments for ‘barriers to innovation’ can cut both ways. For example, it might be the case that in these economic challenging the times the last thing you’d want to do is to take a massive punt on redesigning diagnostic care services for dementia. Or, on the other hand, you might take the view that there’s nothing to lose.

The need for innovations to be ethical and accountable has become increasingly important under the umbrella term ‘responsible innovation’. Not all dementia is Alzheimer’s disease, and yet we are led down the Alzheimer’s path continually by the media. If there were a ‘biomarker’ for Alzheimer’s disease which was very specific and sensitive, and inexpensive to get the results of, would this information help you?

The answer is possibly – but if this were coupled with a private insurance system, you could also find your insurance premiums going through the roof, even if you were to have forty years of healthy living ahead of you.

Certainly the more expensive the investigation doesn’t make it more fool-proof. I’ve known patients with a clear diagnosis of frontal dementia who’ve had plum normal investigations including state of the art MRI scans. And likewise people with radiological atrophy on MRI who don’t have dementia.

I see innovations in dementia as a tool in dementia diagnosis, support and care, but only if used responsibly. Otherwise more noise can be added to the signal, as was clearly the case for incentivising primary care to run case finding tests for dementia. The very predictable unintended consequences that the number of false positive diagnoses of dementia also shot up, although ignorance is possibly worse than fear.

Ask any corporate strategist about the future and he or she will always tell you some of it is about turning threats into opportunities. For me, if you cut through the shill and waffle, an intelligent way to redesigning dementia care isn’t a bad idea, even if I would not necessarily start from here.

 

 

 

This is the talk I will be giving for #WHIS16, the World Health Innovation Summit in Cumbria, on innovation as a societal response to dementia.

A diagnosis of dementia delayed is a diagnosis denied

Shibley Rahman 1 Comment

computer

The first (and thus far) only English dementia strategy was published by the Department of Health in February 2009. Entitled “Living well with dementia” it was described accurately that under-diagnosis of dementia was the norm.

The current feeling about this diagnosis is that it should be a ‘timely diagnosis’. In other words, it should be delivered in a person-centred way, at a time that is right for the person receiving the diagnosis.

The critical recommendation is that a specialist diagnosis should be provided at some stage.

Extract

The type of dementia is indeed relevant. For example, it is possible to target cardiovascular risk factors, such as bad cholesterol, smoking and high blood pressure, to slow down the progression of vascular dementia. Also, say, in diffuse lewy Body dementia a doctor would be wise to avoid prescribing certain medications.

In Chapter 4 of the Department of Health’s “Living well with dementia” (2009), the issues presented by a badly timed diagnosis are provided.

Currently only about one-third of people with dementia receive a formal diagnosis at any time in their illness. When diagnoses are made, it is often too late for those suffering from the illness to make choices. Further, diagnoses are often made at a time of crisis; a crisis that could potentially have been avoided if diagnosis had been made earlier.

Looking at the reality, it is impossible for GPs who are clearly overstretched (as today’s #LMCConf bears out) to be able to make a definitive diagnosis of dementia in a ten minute consultation (or even a twenty minute consultation if a “double slot”).

The question “do you have problems with your memory?” is clearly a daft screening test as, whatever its sensitivity, its specificity is poor. It will pick up problems in memory ranging from the ‘worried well’ to severe depression.

Secondly, a major problem is in the diagnosis of young onset dementia, defined arbitrarily as dementia before the age of 65. One possible cause of this is posterior cortical atrophy, possibly a variant of Alzheimer’s disease, where the predominant initial symptom is in higher order visual processing. Invariably, memory is OK. Memory also tends to be relatively OK in the frontal form of frontotemporal dementia.

The need for referral to specialist services is a very important one. Hospital doctors have a considerable advantage in being able to make the precise diagnosis of type of dementia, with access to sophisticated neuroimaging, blood tests, detailed cognitive psychometry, brainwave scans (EEG) and also tapping off cerebrospinal fluid through lumbar puncture.

The precise gamut of investigations, in addition to a detailed history and examination of the possible proband of person with dementia (and a history, equally of about an hour, from a reliable witness such as a family member), will depend on how obvious the diagnosis is, perhaps.

Some, in very unusual cases, may even require a biopsy of skin, nerve, muscle or brain.

The need to close the ‘diagnosis gap’ was a laudable good intention of the All Party Parliamentary Group 2012 report entitled “Unlocking diagnosis”.

Prof. Sube Banerjee was one of the co-authors of that important document. At a fringe meeting of a day at the King’s Fund, “Leading change in dementia diagnosis and support” in February 2015,  on which I was included as a member of the main panel discussion, Banerjee returned to the importance of the correct diagnosis of dementia.

Slide 1
The UK National Screening Committee (UK NSC) in January 2015 upheld its recommendation against screening everyone aged 65 and over for dementia.

This is clearly the correct decision to me.

There is no screening test which is sensitive and specific enough to pick up the dementias. Bear in mind there are over a hundred different types of dementia (depending on how you count them).

Dr Anne Mackie, Director of Programmes for the UK NSC, said at the time:

While the current test would identify people with mild cognitive impairment, many of them would not go on to actually develop dementia. The evidence shows us that for every 100 people aged 65 tested, 18 would test positive, but only 6 of these would have dementia and 1 case would be missed.

This means we cannot recommend universal screening.

The whole situation was further complicated with NHS England’s ubiquitously criticised decision to incentivise general practitioners through QOF to make a diagnosis of dementia, leading to some pretty untastely headlines – including even in the Financial Times.

FT

This undermined potentially trust in the doctor-patient relationship, where it was known that there was now financial pressure from Government to make the diagnosis. Some in Big Charity even intimated that it was the general practitioners’ fault for not making the diagnosis, when the medical profession through their training were well aware that there exist complicated issues for why patients seek a diagnosis of dementia (for example as described here by Werner and colleagues in 2014).

So actually what happened was ‘demand management’ in the wrong direction. Jeremy Hunt raised expectations through a media war on late diagnosis of dementia (as below), when all along the critical issue is how long people have to wait to get a correct diagnosis of dementia from a specialist, such as memory clinic.

Hunt

The fundamental issue is that a diagnosis delayed is a diagnosis denied. People languishing in waiting for a specialist referral, to find out whether they have dementia or not, having been told that they might have dementia, is quite sadistic, some might say. Certainly not an approach endorsed by the medical profession.

This is not of course the first and only time Jeremy Hunt has actively done harm from a public health perspective. His other interventions on stroke and skin lesions (from tweet) have been equally potentially disastrous, worthy of a clinician being under a spotlight, some might argue, by his or her regulator.

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But what is happening after this delay while people are waiting for the diagnosis from specialist services?

Some people find out that they don’t have dementia at all. For example, Ken Clasper has blogged openly about how he became re-diagnosed with minimal cognitive impairment, with considerable personal readjustment.

To put it succintly, “mild cognitive impairment” is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

It is not necessarily the case that a clinician makes the ‘wrong diagnosis’. But this a big deal – as a wrong diagnosis of dementia subjects someone to a pretty life changing event in itself, and also there’ the opportunity cost of not having the actual condition being managed properly?

Firstly, I explained previously how GPs can only make a working diagnosis in severe scare resource restraint in time and funding. There is too much of a rampant blame GPs culture currently.

Secondly, clinical presentations change can all the time. By the time a patient gets to see a professional in a specialist service, his presentation might be more florid or obvious. The symptoms could be more obvious, for example.

Thirdly, specialist services have access to tests which can refine the diagnosis. For example, it is not uncommon for a diagnosis of vascular dementia to be added to a diagnosis of Alzheimer’s disease, if a patient presents with a particular type of brain scan – this information would not necessarily have been known to the general practitioner.

Fourthly, I don’t believe that you can suddenly wake up with dementia one morning and not have dementia the previous day. The development of a dementia is a gradual process; all that changes is whether a particular individual fits within a particular diagnostic criteria.

And these criteria change all the time.

When, a few years back, some clinicians revised the criteria for the aMCI, they were aware that many people with dementia would become re-classified as having aMCI. This ‘reclassification’ of diagnosis might have substantial effects, for example, on a State funding benefits.

In an ideal world, you’d want to follow serially for a while a person with possible dementia to see if that person’s cognition or behaviour is indeed markedly changing. This would be an ideal built-in requirement for the diagnosis of dementia as the most common dementias are by definition chronic irreversible and progressive, caused by conditions of the brain.

The delay while someone is waiting for specialist services serves another function too.

Remember the Government statement about the national screening committee? It also contained the following.

Dr Charles Alessi, dementia lead for PHE, said:

In the absence of a treatment or cure, it is important that we take action to reduce the numbers of people getting dementia, delay the onset of dementia or reduce its impact.

PHE and the UK Health Forum published the ground-breaking Blackfriars Consensus earlier this year, which makes the case for concerted action to reduce people’s risk of dementia by supporting them to live healthier lives by doing things like eating well, being active and not smoking.

The mood music has changed.

Firstly, we’ve got another thrust of policy where we are all drug trial guinea pigs now. And many people have vested interests in promoting the idea that there is a pre-symptomatic phase of dementia, called “pre-dementia”, which is amenable to treatment. This of course is part of the whole problem of the over-diagnosis trend which Dr Iona Heath has brilliantly discussed.

Similarly, I feel Prof John Yudkin has been right to draw attention to the similar phenomenon of ‘pre-diabetes‘, which many of us feel serves the function of opening up new markets, patients who can become customers for drugs. Deborah Orr’s article on over-medicalisation of illness in general is brilliant, and I strongly commend it to you.

Your risk of developing dementia might be made possible with your personal genomic scan being done in the future. And with the results, you might possibly be tempted to seek private health insurance. Risk is fundamental to how that industry works.

It is well known the warmth with which the current Government discusses informatics/Big Data and personal genomics.

Take for example George Freeman MP talking in parliament on 29 January 2016. This is the sort of stuff which public-private collaborations are made of, where the State can underwrite future shareholder dividends in private companies, and where the NHS can finally export an aspect of dementia care as ‘profitable’.

The Hansard entry goes thus:

George Freeman

Public health, despite formidable cuts from the current Government in their spending review, remains big business. This was elegantly discussed in an article in the British Medical Journal on the ‘corporate capture of public health’ in 2012. [Mindell, JS; Reynolds, L; Cohen, DL; McKee, M (2012) All in this together: the corporate capture of public health. BMJ (Clinical research ed), 345. ISSN 0959-8138.]

Secondly, people who are told they ‘maybe have dementia’ can enrol onto research programmes. There is now a national aspiration for the number of people to be enrolled through programmes such as #JoinDementiaResearch. Or people may simply be encouraged to donate directly to charity to fund dementia research, with an agenda skewed in a direction away from quality of care towards ‘future treatments’.

But I do feel, as leading campaigner Dr Martin Brunet clearly does, that we should continually be on guard as to who exactly benefits from the current dementia policy.

An apt starting point will be to know for certain what are the regional variations in the wait to get to memory clinics from primary care. We also need to know roughly want proportion of diagnoses at primary care need to be revised.

And finally, we need to know what to do about this (for example is there a case of further training of health professionals in the diagnosis of dementia?)

What we don’t want is an expedited diagnosis which turns out to be wrong. The leading campaigner Chris Roberts, living with mixed vascular and Alzheimer’s dementia, has specifically warned about this in public conferences.

A quote often misattributed to Joseph Stalin is, “The … of one man is a tragedy, the … of millions is a statistic.” I do not want this debate to blame anyone (especially when the medical profession is doing its utmost for this policy). I want us to learn constructively from where things have clearly gone wrong. This will be for the benefit of all NHS patients.

50 shades of drivel in incentivising dementia diagnosis in primary care in England

Shibley Rahman 0 Comments

50 shades

Nobody wants a person waiting unreasonably for a correct diagnosis of dementia.

This discussion is NOT about that.

The now infamous odious scheme from NHS England was designed to give GP surgeries £55 for every patient on their list who has been diagnosed with dementia in the six months up to next March, as part of a drive to get the rate of diagnosis up from about 50% to two-thirds of all those who develop the condition.

Identifying dementia in primary care could minimise the impact of a late intervention; however, it shows high rates of misdiagnosis.

Any misdiagnosis as dementia is of course a disaster professionally.

One of the reasons for problems in primary care may bethe lack of knowledge of adequate cognitive screening instruments.

This is not because it’s the GPs’ “fault”. This is an incredibly specialised area which needs to be done by trained professionals.

Yokomizo, Simon and Bottino (2014) indeed suggested:

“[Screening] Tests such as 6CIT, AMT, GPCOG, Mini-Cog, MIS, MoCA, and STMS seem to be good alternatives to the use of the Mini-Mental State Examination when considering factors such as application time, sensitivity, specificity, and number of studies. However, there is a wide range of tests with different characteristics, therefore it is recommended that the professional gets some expertise in a few number of instruments in order to be able to choose which to use, or use in combination, depending on the setting and the profile of the patient.”

The way in which the policy of incentivised case finding for dementia was introduced is beyond contempt.

The dementia identification scheme was not approved by the BMA GPs committee in negotiations on the 2015/16 GP contract. But this is symbolic of the general arrogant way in which policy seems to be imposed in a ‘there is no alternative’ manner.

In October 2014,  the GPC deputy chair Richard Vautrey said GPs did not need a financial incentive to diagnose dementia, which was something they were already doing, and the investment would be better spent supporting practices to care for these patients.

He said,

“Diagnosis of dementia is important, but chasing government targets is not, particularly if this undermines the doctor-patient relationship, which this proposal could do.”

Historically, the incentivisation of General Practitioners (GPs) to diagnose dementia began in 2011 with updated dementia strategy.

It is now becoming a matter of transparency and integrity that NHS England publishes the official impact assessment which accompanies this policy, and identify clearly where the sources for this policy lie.

Major depressive disorder can present with profound memory problems; it can also present with other symptoms, more traditionally associated with problems in the front of the brain, such as poor planning or apathy.

Major depressive disorder with psychotic features is relatively frequent in patients with greater depressive symptom severity and is associated with a poorer course of illness and greater functional impairment than MDD without psychotic features.

Multiple studies have found that patients with psychotic mood disorders demonstrate significantly poorer cognitive performance in a variety of areas than those with nonpsychotic mood disorders. The Mini Mental State Examination (MMSE) and the Dementia Rating Scale, Second Edition (DRS-2) are widely used to measure cognitive functions in research on MDD with psychotic features.

Wagner and colleagues (2011) reported that:

“the suggested cut-off scores for the MMSE and the DRS-2 in patients with MDD with psychotic features may in some cases produce false-positive indications of dementia.”

A risk of the incentivising scheme is that it potentially undermines the bond of trust between doctors and patients by giving GPs for the first time a financial incentive to diagnose a specific condition.

Whilst certain people who are accountable to boards of trustees or shareholders, GPs are accountable to their patients and to the clinical regulator, the General Medical Council.

Putting it politely, GPs are sitting on quite an explosive matter, and it’s fair to say that existent memory clinics could be better.

It can be difficult to persuade a patient, who is generally apprehensive about the diagnosis, to go to the psychiatric hospital for a memory assessment, especially when post-diagnostic support can be so patchy and poor.

The scheme is a textbook perverse incentive. The initiative is intrinsically unfair because it potentially GP practices with the previously lowest rates of diagnosis the most money.

The policy, more importantly, offends many professional physicians, who have studied medicine, both intellectually and ethically.

Dr Martin Brunet comments:

“We need a Memory Worker in every GP practice; someone who will visit the home within days of a diagnosis, offering flesh-and-blood support to anyone living with dementia. They don’t need to be nurses – though they could call upon their expertise if things get difficult – but they need to have time: time to listen; time to sit; time to visit regularly so that they become a familiar face, a friend even; a travelling companion on the journey called dementia.

These Memory Workers would need to be trained. Get someone like the fabulous dementia campaigner Beth Britton to head this up – hearing her talk for half an hour is enough to inspire anyone to see the person behind the dementia and to recognise the importance of expanding horizons rather than closing them down. We would need thousands of workers, of course, even if each one covered two or three practices. Can we find people to do this work? Of course we can, but it will take time, so we need to start now.”

But a group of GPs (Bell and colleagues, 2015)have further broken rank in an article entitled, “A diagnosis for £55: what is the cost of government initiatives in dementia case finding”

“Not only are we concerned about not reducing the memory gap, but the incentivisation of diagnoses of dementia has the potential to make things worse. The dementia diagnosis rate in Sheffield is higher than most (62%), but this creates more follow-up and support for people with dementia.

This affect waiting lists in the memory clinics, which have increased. A lot of work and resources have been spent to reduce the wait. We investigated the quality of GP referrals to memory clinics. Seventy-six per cent of GP referrals to our memory clinic included cognitive screens. The screens such as the 6CIT have good sensitivity and specificity in distinguishing people with mild to moderate Alzheimer’s disease to health volunteers who responded to an invitation to help in research on dementia. These tools will not have the same sensitivity and specificity if conducted on people who attend GPs with cognitive complaints, as this population will likely include many with functional memory disorder and due to depression. GPs are asked to exclude reversible causes of dementia. Testing of B12 and folate was high, but mood screening was included in only 26%. Depression is a severe debilitating disorder that is treatable. It is also a common comorbidity in people with dementia. We suggest that the financial incentivisation of the diagnosis of dementia may not achieve its targets in reducing the dementia gap, will increase the strain on GPs and Memory clinics, which may adversely affect waiting times and the provision of good-quality post diagnosis care and support for people with dementia and their families.”

The question is: where are the clinical leaders who wish to speak out the problems with this incredibly problematic policy?

References

Bell S, Harkness K, Dickson JM, Blackburn D. A diagnosis for £55: what is the cost of government initiatives in dementia case finding. Age Ageing. 2015 Jan 24. pii: afu205. Citation  here.

Wagner GS, McClintock SM, Rosenquist PB, McCall WV, Kahn DA. Major depressive disorder with psychotic features may lead to misdiagnosis of dementia: a case report and review of the literature. J Psychiatr Pract. 2011 Nov;17(6):432-8. doi: 10.1097/01.pra.0000407968.57475.ab. The citation is here.

Yokomizo JE, Simon SS, Bottino CM. Cognitive screening for dementia in primary care: a systematic review. Int Psychogeriatr. 2014 Nov;26(11):1783-804. doi: 10.1017/S1041610214001082. Epub 2014 Jul 15. Citation here.

 

Communication skills for medical students on disclosing the possible diagnosis of dementia

Shibley Rahman 0 Comments

Dr Sharma and I will be hosting a communication skills session for final year medical students on Sunday.

We intend to use the following mock scenario on disclosing a diagnosis of dementia.

The aim of this session is to discuss how communication skills are assessed in medical examinations.

 

This is the actual example scenario on the MRCP(UK) website. The MRCP(UK) is the examination for the Membership of the Royal Colleges of Physicians.

The current marksheets are here.

The current criteria:

Clinical Communication Skills
Explains relevant clinical information in an Accurate
Clear
Structured
Comprehensive Fluent and Professional manner

Managing Patients’ Concerns
Seeks, detects, acknowledges and attempts to address patient’s or relative’s concerns
Listens
Confirms patient’s or relative’s knowledge and understanding
Empathic

Clinical Judgement
Selects or negotiates a sensible and appropriate management plan for this patient, relative or clinical situation
Can apply clinical knowledge, including knowledge of law and ethics, to this case

Maintaining Patient Welfare
Treats patient respectfully and sensitively and ensures comfort, safety and dignity

 

Scenario

Scenario

Scenario

Scenario


“There’s more to a person than the dementia”. Why personhood matters for future dementia policy.

Shibley Rahman 2 Comments

“Dementia Friends” is an initiative from the Alzheimer’s Society and Public Health England. In this series of blogpost, I take an independent look at each of the five core messages of “Dementia Friends” and I try to explain why they are extremely important for raising public awareness of the dementias.

 

 

There’s more to a person than the dementia.

In 1992, the late Prof Tom Kitwood founded Bradford Dementia Group, initially a side-line. Its philosophy is based on a “person-centred” approach, quite simply to “treat others in a way you yourself would like to be treated”.

A giant in dementia care and academia, I feel he will never bettered.

His obituary in the Independent newspaper is here.

Personhood is the status of being a person. Its importance transcends medicine, nursing, policy, philosophy, ethics and law even.

Kitwood (1997) claimed that personhood was sacred and unique and that every person had an ethical status and should be treated with deep respect.

A really helpful exploration of this is found here on the @AlzheimerEurope website.

Personhood in dementia is of course at risk of ‘paralyis by analysis’, but the acknowledgement that personhood depends on the interaction of a person with his or her environment is a fundamental one.

Placing that person in the context of his past and present (e.g. education, social circumstances) is fundamental. Without that context, you cannot understand that person’s future.

And how that person interacts with services in the community, e.g. housing associations, is crucial to our understanding of that lived experience of that person.

All this has fundamental implications for health policy in England.

Andy Burnham MP at the NHS Confederation 2014 said that he was concerned that the ‘Better Care Fund’ gives integration of health services a ‘bad name’.

It is of course possible to become focused on the minutiae of service delivery, for example shared electronic patient records and personal health budgets, if one is more concerned about the providers of care.

Ironically, the chief proponents of the catchphrase, “I don’t care who is providing my care” are actually intensely deeply worried about the fact it might NOT be a private health care provider.

Person-centered care is an approach which has been embraced by multi-national corporates too, so it is perhaps not altogether a surprise that Simon Stevens, the current CEO of NHS England, might be sympathetic to the approach.

Whole-person care has seen all sorts of descriptions, including IPPR, the Fabians, and an analysis from Sir John Oldham’s Commission,  and “Strategy&“, for example.

The focus of the National Health Service though, in meeting their ‘efficiency savings’, has somewhat drifted into a ‘Now serving number 43′ approach.

When I went to have a blood test in the NHS earlier this week, I thought I had wandered into a delicatessen by accident.

delicatessan

But ‘whole person care’ would represent a fundamental change in direction from a future Government.

Under this construct, social care would become subsumed under the NHS such that health and care could be unified at last. Possibly it paves the way for a National Care Service at some later date too.

But treating a person not a diagnosis is of course extremely important, lying somewhat uneasily with a public approach of treating numbers: for example, a need to increase dementia diagnosis rates, despite the NHS patient’s own consent for such a diagnosis.

I have seen this with my own eyes, as indeed anyone who has been an inpatient in the NHS has. Stripped of identity through the ritualistic wearing of NHS pyjamas, you become known to staff by your bed number rather than your name, or known by your diagnosis. This is clearly not right, despite years of professional training for current NHS staff. This is why the campaigning by Kate Granger (“#hellomynameis”) is so important.

It is still the case that many people’s experiences of when a family relative becomes an inpatient in the National Health Service is a miserable one. I have been – albeit a long time ago – as a medical student on ward rounds in Cambridge where a neurosurgeon will say openly, “He has dementia”, and move onto the next patient.

So the message of @DementiaFriends is a crucial one.

Together with the other four messages, that dementia is caused by a diseases of the brain, it’s possible to live well with dementia, dementia is not just about losing your memory, dementia is not part of normal ageing, the notion that there’s more to a person than the dementia is especially important.

And apart from anything else, many people living with dementia also have other medical conditions.

And apart from anything else, many people living with dementia also have amazing other skills, such as cooking (Kate Swaffer), fishing (Norman McNamara), and encouraging others (see for example Chris Roberts’ great contributions to the community.)

References

Kitwood, T. (1997).Dementia reconsidered: the person comes first. Open University Press.

The difficulties of the delayed diagnosis for dementia in primary care

Shibley Rahman 1 Comment

If a surgery appointment is booked for someone over 65, a ‘participating GP’,  might be incentivised to ask about memory problems in a patient at risk of dementia due to heart disease, stroke or diabetes.

There is a concern that some people are missing out on a timely diagnosis of dementia.

It is claimed that some people go undiagnosed for around ten years even, and a large proportion of persons with dementia have never received a formal diagnosis of a dementia.

A further worry is that certain people with much lesser degrees of memory impairment will be plugged into the dementia care pathways, according to Dr John Cosgrove.

At worst, this policy, where individuals are said to be ‘ambushed’ in the video above, may put people from going to see their GPs about other problems.

The risk factors, heart disease, stroke or diabetes, are not known to be risk factors for many types of dementia, although they are certainly treatable risk factors for the ‘vascular dementias’.

There is a concern about what then happens to those people who then receive a possible diagnosis of dementia.

It is known that many of these individuals do not actually want further investigations. In fact, for some, they will not even turn out to have a dementia at all.

A probable diagnosis of dementia is certainly ‘life changing’, and it can mean that a person has access to support services.

But a full work-up of a dementia, ideally, needs more than a quick chat over memory problems.

In one type of dementia, frontal dementia, common in the younger age group (that is, below the age of sixty), memory problems are not even prominent. This type of dementia is characterised by an insidious change in behaviour and personality, often noticed first by those closest to the person with that type of dementia.

And dementia is not the cause of all memory problems: depression in the older age group is an important cause of memory problems.

It is not entirely clear what the medical model offers for dementia; many of the drugs for memory have modest effect if that in Alzheimer’s disease, the commonest form of dementia worldwide.

In fact, Prof Sube Banerjee last week in the Brighton and Sussex Medical School as the new Chair of Dementia there voiced concerns about the relative ineffectiveness that antidepressants can have in dementia; this comes on top of previous concerns that antipsychotics may be relatively contraindicated in some patients particularly, and might even lower the objective quality of life of an individual with dementia.

It’s impossible also to ignore the effects that a diagnosis of dementia might potentially have on the ability of a person to drive a motor vehicle.

And a diagnosis of dementia might put pressure on well informed people concerning financial considerations through ‘lasting power of attorney’.

One wonders how the drive for diagnosis in primary care can enable a balanced discussion of all these powerful issues, against the background of this government policy to improve diagnosis rates of dementia.

At the tail end of Cathy Jones‘ excellent Channel 5 report, the lack of adequate funding of social care is raised.

Further details of Dr Cosgrove’s concerns are described clearly in this blogpost.

This policy as it stands could do much more damage than good,with many unintended consequences arising from false diagnoses.

But there are pressures at play which might give this policy a sustainable momentum for the timebeing.

I am a person, not a diagnosis: deconstructing Kate Swaffer’s poem on dementia

Shibley Rahman 2 Comments

I have always understood “living with dementia” to mean that that person carries on with life, knowing that there is an underlying medical phenomenon somewhere. To me, it’s exactly the same as living in recovery from alcohol dependence. If I were to have another alcoholic drink, I wouldn’t be able to stop drinking. It’s a pathological reaction. I view it in the same way that some people have an allergy to peanuts. I don’t actively think about not drinking all day – it’s just something that’s part of my life.

It did genuinely come as a surprise to me, however, that some individuals view ‘living with dementia’, as living with somebody close to them with a dementia. I respect this viewpoint, and it is clear that no offence is intended there as well.

Kirsty

I don’t know what a person living with dementia (in my sense of the phrase) “feels like”, in the same way philosophically I cannot know what he or she perceives as the colour red. But an attempt to understand what one of the dementias might be like for that person I believe is pivotal for care, consistent with Tom Kitwood’s seminal work on personhood. In this framework, your prime concern is the person (rather than patient) with one of many types of dementia. A person will be a ‘product’ of experiences unique to him or her, and his or her own physical health, and not just a sum of his or her chemical receptors in the brain.

For medical professionals, a diagnosis can operate at a number of levels. One is individual, pertaining to someone’s identity or concept of being ‘sick’. One can be institutional (in relation of that individual to clinicians, politicians or social movements). We have seen this year how some politicians have been clamouring for a slice of the dementia diagnosis action. One can be societal, which depends entirely on how diagnosis frames that particular entity. For example, society might view that a delayed diagnosis for a dementia, where there is no obvious reason for this delay, is simply unacceptable.

There are in theory four possible options. With a diagnosis, a person may find himself or herself with a ‘disease’ or ‘illness’that potentially could be cured or treated, ‘healthy’ or no illness (but subject to future monitoring), ‘at risk’ of developing a future disease, or an illness with no disease (something wrong but not fitting conventional protocols of medicine.)

But as Blaxter warned back in 1978, “The activity known as ‘diagnosis’s is central to the practice of medicine but is studied less than its importance warrants.”

A diagnosis is by no means a trivial issue. It has become powerful because of the close proximity in academic and practitioner circles between legal, insurance and medical jurisdictions.

A diagnosis can have important consequences. Those consequences might be “administrative”, allowing somebody to access resources in health care; it can “legitimise” sickness (or the rather perjorative notion of “deviance”); or can encourage research into the existing evidence base.

A person as a result of a diagnosis may adopt “a sick role”, after Talcott Parsons’ seminal work in 1951. This construct of ‘sanctioned deviance’ is not without its critics,  who argue that this encourages a culture of blaming ‘the sick’.

For the purposes of the medical profession, a diagnosis can be seen as a diagnosis of a cure or treatment. Indeed, for many, the identification of a cure or treatment would contribute to diminishing the stigma associated with, or discrimination to the detriment of, a person with a diagnosis. These days, particularly for dementia perhaps, given arguably the lack of a robust cure or disease-modifying treatments for the most common form of dementia known as Alzheimer’s disease, having a diagnosis might be seen as enabling rather than labelling (after Marian Naidoo.)

Kate Swaffer, who has herself written candidly about her personal experiences of dementia, concludes her recent poem, “If they are not diagnosed with dementia…They cannot be living with it.”

In explanation, Kate Swaffer further writes:

“Some people have agreed vehemently with my opinion about the use (or mis-use) of the term ‘Living with dementia’ and others have disagreed just as strongly, while others have sought to question further, to look at themselves differently, or to question me. I too have sought to look at this topic through others’ eyes, to see it differently and from as many sides of the same coin as humanly possible.”

There is indeed more to this than immediately meets the eye. Take autism, for example.

Contrary to popular assumption, people diagnosed with so-called “mild forms of autism” often don’t fare any better in life than those with severe forms of the disorder. That’s the conclusion of a recent study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.

In fact, people diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) are no more likely to marry or have a job than those with more disabling forms of autism, according that study.

There’s been a growing realisation that diagnostic criteria are not “gospel“, and a number of medical phenomena have seen a number of patient groups query this; these include myalgic encephalitis, B12 deficiency and Lyme Disease.

In the case of autism, such difficulties might be mitigated against by merging of pervasive developmental disorder into the autism spectrum. And a similar phenomenon is taking place for the reclassification of the dementias as “neurocognitive disorders” (of major and minor types.)

It can’t easily be denied though that some individuals find a diagnosis helpful in that such a diagnosis might help to make sense of the past, present, and future (see for example “midlifeguy”‘s experience here).

Kelly Boylin writes that:

“”Time to change Wales” are doing amazing things and I am proud to say that I wear their end stigma badge everyday and am frequently asked about it. I am so passionate about stamping out stigma and discrimination against mental health that some days it’s literally all I can think about. I guess that’s why I set up my campaign Kim’s Voice, in memory of my late sister who committed suicide in 2009.”

Persons who have been given medical diagnoses have tended to find support from others who share similar experiences and there are instances of specific-issue health movements shaping medical practice and government policy. And it’s inevitably going to be the case that some diagnoses are contested, challenged and/or politicised. Indeed, diagnostic categories can, and often are, resisted or disputed.

Whether you happen to agree with Kate Swaffer, ironically, is personal to you, but it’s hard to deny that that poem throws up some important questions about identity and the way others perceive you.

My personal view of the importance of high quality #research in dementia for the #G8summit

Shibley Rahman 0 Comments

Dementia research

I have a foot in both research camps.

I believe in good quality research about the ‘medicine’ of dementia.

In the world of research, I am known to have contributed an original paper in the diagnosis of the frontal-variant of frontotemporal dementia.

This paper explained why people with a dementia could even end up having a diagnosis of this type of dementia, even though presenting in clinic with normal blood tests, psychological tests or brain scans.

Such patients did, however, have profound changes in behaviour and personality noticed by their closest ones, usually friends and family.

The paper itself has been quoted in the current Oxford Textbook of Medicine chapter reviewing the most common types of dementia, their diagnosis and management.

I do however have academic views on the importance of the ‘timely’ correct diagnosis of dementia, rather than early diagnosis.

I never give advice about anything on Twitter, as I am not a physician, but it is nice when what you say has an impact on general education of people about dementia.

I can be found on both @dementia_2014 and my other Twitter account (as I am trained in academic law as well as research in dementia) @legalaware.

Take for example how depression can be in the wrong hands misdiagnosed as dementia.
Shibley

This is an example, perhaps, of where a diagnosis is a label, and disabling not enabling.

But for very many a correct diagnosis of a type of dementia will be a key to the door for opening up the relevant care.

I feel that, whatever the ‘fiscal constraints’ the NHS finds itself in now and the future, despite the argued need for transformational change in NHS services, people with dementia should be at some stage diagnosed by somebody with specialist medical experience.

This is reflected here in a recent excellent article in the Telegraph.

The other camp is this, and oddly enough there is some overlap in my wish for people with dementia to be given the highest priority in society.

I also firmly believe in good quality research of allowing people to live as best a life they can.

This is intensely personal, as I am physically disabled, and I am all too aware about how people can make crash judgments of you.

I am about to publish a book on ‘Living well with dementia’ on January 13th 2014.

I am honoured to be well respected by academics in the field of dementia, including Prof Alistair Burns the current lead for dementia in England.

Burns tweet

I thrive from the research contributions daily all around the world in research into dementia.

I would like to see the UK play a part in leading the research community about all aspects, including the medicine of the condition itself, its possible cure one day, and current practical help in improving quality of life.

Finally, I think with the current academic community in the UK in dementia, the UK can and should achieve this.
Human brain

Jeremy Hunt’s message on dementia should have been ‘screened’ for damaging myths

Shibley Rahman 0 Comments

My presumption is that I wish to be extremely positive about HM Government’s own volition about leading the G8 with the subject of dementia.

Also, the “Prime Minister’s Dementia Challenge”, which sets out a roadmap for dementia for this year and next, has been a success which I much admire.

David Cameron and Jeremy Hunt, and their team, must rightly be applauded.

However, some accidental problems with the latest message appear to have crept in unfortunately.

The article in the Telegraph says that, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”

You can watch the video here.

Recently in English policy a skirmish over screening has been temporarily staved off by certain stakeholders avoiding ‘the S word’.

They have decided to plump for the ‘C-word instead’.

“Case-finding”

But in fairness Jeremy Hunt MP, Secretary of State for Health, in the actual “piece to camera” does not use the word “suffering”.

This is particularly ironic as Hunt later says, “”We’ve got to overcome the stigma.”

A major thrust of dementia must be to destigmatise dementia, by emphasise the myriad of things which can be done to help individuals living with dementia, like improvements of the house and the outside environment, non-statutory advocacy or dementia friendly communities.

Hunt’s attempts to overcome the stigma are, unfortunately, somewhat mitigated by his claim that,

“Dementia is a really horrible condition.”

Hunt mentions that “This is not surprisingly because memory is an intrinsic part of all of this.”

The meme that memory problems are synonymous with dementia remains a persistent toxic misrepresentation.

Not all memory problems are dementia (depression can cause profound memory problems.)

Not all dementia presents with memory problems. One of the most common forms of dementia in the age group below 60 is the behavioural variant of frontotemporal dementia.

This presents typically with an insidious change in behaviour and personality, often not noticed by the person himself or herself (but noticed by somebody close by.)

Even some of such individuals can present with plum-normal brain scans.

Advanced MRI brain scans

This small fact would aggravate hugely physics experts to sit on dementia clinical steering groups perhaps, if they knew.

A number of parliamentarians have recently emphasised the need for prevention.

This is indeed a worthy claim.

“You can change your lifestyle to help to stave off the diagnosis.”

However the evidence for this claim is extremely scant.

Non-clinicians in policy must not give false hope to members of society.

This is extremely irresponsible.

Hunt continues, “GPs have been reluctant to give a diagnosis as they’ve thought that ‘nothing is really going to happen'”

There has been in recent years a language depicting war, between GPs and persons with a possible diagnosis of dementia.

There is a very damaging myth, perpetuated by some influential people in the third sector, that GPs are actively withholding a dementia diagnosis in some people.

This claim undermines the credibility and probity of medical professionals, but GPs are relatively defenceless against such a slur.

Hunt says, “If people are worried, come and talk to your GP.”

A moral dementia policy is giving correct support including non-pharmacological interventions to support people living with dementia, as well as support for carers who often experience significant pressures in caring themselves.

People need to be accurately diagnosed with dementia. A wrong ‘label’ of dementia, for a person with no dementia, can do much harm.

Nonetheless, the idea of identifying correctly new people with dementia such that they can be given the right support is a commendable one.

It’s essential though that we do not enmesh this with this policy goal becoming targets, and clinicians being thrown off track by perverse incentives which are not directly beneficial to patients of the NHS.

Would I want to know if I had a dementia?

Shibley Rahman 1 Comment

Brain scan

Would I want to know if I had a dementia?

The background to this is that I am approaching 40.

For the purposes of my response, I’m pretending that I didn’t study it for finals at Cambridge, nor learn about it during my undergraduate postgraduate training/jobs, nor having written papers on it, nor having written a book on it.

However, knowing what I know now sort of affects how I feel about it.

Dementia populations tend to be in two big bits.

One big bit is the 40-55 entry route. The other is the above 60 entry route. So therefore I’m about to hit the first entry route.

I don’t have any family history of any type of dementia.

My intuitive answer is ‘yes’. I’ve always felt in life that it is better to have knowledge, however seemingly unpleasant, so that you can cope with that knowledge. Knowledge is power.

If I had a rare disease where there might be a definitive treatment for my dementia, such as a huge build-up potentially of copper due to a metabolic inherited condition called Wilson’s disease, I’d be yet further be inclined to know about it.

I would of course wish to know about the diagnosis. The last thing I’d want is some medic writing ‘possible dementia’ on the basis of one brain scan, with no other symptoms, definitively in the medical notes, if I didn’t have a dementia. This could lead me to be discriminated against to my detriment in future.

There is a huge number of dementias. My boss at Cambridge reviewed the hundreds of different types of dementia for his chapter on dementia in the current Oxford Textbook of Medicine. Properly investigating a possible dementia, in the right specialist hands, is complicated. Here‘s his superb chapter.

But just because it’s complicated, this doesn’t mean that a diagnosis should be avoided. Analysis can lead to paralysis, especially in medicine.

I very strongly believe that there’s absolutely nobody more important that that person who happens to living with a diagnosis of dementia. That diagnosis can produce a constellation of different thinking symptoms, according to which part of the brain is mainly affected.

I also think we are now appreciating that many people who care for that person also may have substantial needs of their own, whether it’s from an angle of clinical knowledge about the condition, legal or financial advice.

I think though honesty is imperative.

I think we need people including charities to be honest about the limitations and potential benefits in defined contexts about drug treatments for dementia. It’s clearly in the interest of big pharmaceutical companies to offer hope through treatments which may objectively work.

I think we also need to be very open that a diagnosis of dementia isn’t a one path to disaster. There is a huge amount which could and should be done for allowing a person with dementia to live well, and this will impact on the lives of those closest to them.

This might include improving the design of the home, design of the landscape around the home, communities, friends, networks including Twitter, advocacy, better decision-making and control, assistive technology and other innovations.

The National Health Service will need to be re-engineered for persons with a diagnosis of dementia to access the services they need or desire.

Very obviously nobody needs an incorrect ‘label’ of diagnosis. The diagnosis must be made in the right hands, but resources are needed to train medical professionals properly in this throughout the course of their training.

All health professionals – including physicians – need to be aware of non-medical interventions which can benefit the person with dementia. For whatever reason, the awareness of physicians in this regard can be quite poor.

There is no doubt that dementia can be a difficult diagnosis. Not all dementia is Alzheimer’s disease, characterised by symbolic problems in new learning. There are certain things which can mimic dementia for the unaware.

But back to the question – would I rather know? If the diagnosis were correct, yes. But beware of the snake oil salesman, sad to say.