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“There’s more to a person than the dementia”. Why personhood matters for future dementia policy.
“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.
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.
“Think like a multinational corporate leader. Act like the chief of the NHS.”
Simon Stevens’ catchphrase is: “Think like a patient, act like a taxpayer.”
In 2013, the US and EU decided to start negotiations on a new free trade agreement, the Transatlantic Trade and Investment Partnership (TTIP).
In a recent piece for the New Statesman, the most notable comments by Andy Burnham MP in George Eaton’s interview concerned TTIP and its implications for the NHS (apart from he was spitting bullets at aspects of HS2).
Many Labour activists and MPs had been concerned, according to George, “at how the deal, officially known as the Transatlantic Trade and Investment Partnership (TTIP), could give permanent legal backing to the competition-based regime introduced by the coalition.”
And here was Andy again at the start of the European elections (not reported by the media who were much more interested in Nigel Farage, Roger Helmer, and their ilk.)
As Benedict Cooper wrote recently on The Staggers for the New Statesman:
“A key part of the TTIP is ‘harmonisation’ between EU and US regulation, especially for regulation in the process of being formulated. In Britain, the coalition government’s Health and Social Care Act has been prepared in the same vein – to ‘harmonise’ the UK with the US health system.
“This will open the floodgates for private healthcare providers that have made dizzying levels of profits from healthcare in the United States, while lobbying furiously against any attempts by President Obama to provide free care for people living in poverty. With the help of the Conservative government and soon the EU, these companies will soon be let loose, freed to do the same in Britain …
… The agreement will provide a legal heavy hand to the corporations seeking to grind down the health service. It will act as a transatlantic bridge between the Health and Social Care Act in the UK, which forces the NHS to compete for contracts, and the private companies in the US eager to take it on for their own gain.”
So fast forward a few months.
Ed Miliband asked David Cameron today specifically how TTIP would impact on the NHS.
Cameron reported today that there had been five good meetings on progressing it, and continued thus:
“We are pushing very hard and trying to set some deadlines for the work. No specific deadline was agreed, but it was agreed at the G7 that further impetus needed to be given to the talks and, specifically, that domestic politicians needed to answer any specific questions or concerns from non-governmental organisations, or indeed public services, that can sometimes be raised and that do not always, when we look at the detail, bear up to examination.”
And the attack on NGOs continued:
“I do think this is important because all of us in the House feel—I would say instinctively—that free trade agreements will help to boost growth, but we are all going to get a lot of letters from non-governmental organisations and others who have misgivings about particular parts of a free trade agreement. It is really important that we try to address these in detail, and I would rather do that than give an answer across the Dispatch Box.”
So the upshot was Cameron agreed to write to Miliband in detail to provide an update on TTIP and the NHS at last.
And this is not a moment too soon – it’s almost a year to the day since @Debbie_Abrahams asked about this on 19 June 2013 (see here).
Cameron tried also to advance the rather bizarre argument that TTIP would lift people out of poverty, trying to link up in a very Conservative approach to the free trade arrangements and the social determinants of health.
The most helpful exchange, perhaps however, was between Andrew Gwynne and the Prime Minister this afternoon:
From the late 1980s, a narrative surrounding the ethics and economics of human gene patents has been taking shape into a ‘perfect storm’.
The discussion included impact of gene patents on basic and clinical research, on health care delivery, and on the ability of public health care systems to provide equitable access when faced with costly patented genetic diagnostic tests.
Scientists at institutions around the world discovered and sequenced a series of genes linked to breast and ovarian cancer in the early 1990s.
Mutations in these genes prevent the body from producing tumor suppressing proteins, which in turn increases an individual’s risk of contracting breast or ovarian cancer.
A key discovery, for example, was that individuals with these mutations have a cumulative lifetime risk of ~40–85% of developing breast cancer and ~16–40% chance of developing ovarian cancer, compared with 12.7% and 1.4% risk for the general population of developing breast or ovarian cancer, respectively.
So with these cutting edge findings in research, ‘translationary’ laboratories developed diagnostic tests for these mutations, which opened up the possibility of preventive management for breast and ovarian cancer, including prophylactic surgery and the use of certain medications.
There are countless other examples.
There also has been talk about doing a genomic screen with a view to identifying genetic risk factors for the dementias.
And Simon Stevens lovebombed the idea last week at the NHS Confederation:
“First, personalisation. A decade and a half on from the Human Genome Project, we’re still in the early days of the clinical payoff. But as biology becomes an information science, we’re going to see the wholesale reclassification of disease aetiologies. As we’re discovering with cancer, what we once thought of as a single condition may be dozens of distinct conditions. So common diseases may in fact be extended families of quite rare diseases. That’ll require much greater stratification in individualised diagnosis and treatment. From carpet-bombing to precision targeting. From one-size-fits many, to one-size-fits-one.”
So a more appropriate catchphrase for Simon Stevens might be:
“Think like a multinational corporate leader. Act like the chief of the NHS.”
One concern has been that TTIP powers would jeopardise well entrenched national laws and regulations.
Frances O’Grady of the UK’s Trade Union Congress for example, is publicly concerned that deregulation and bolstering of corporate rights could mean an accelerated privatisation of the UK’s National Health Service.
“The clauses [of ISDS] could thwart attempts by a future government to bring our health service back towards public ownership”.
A “socialist planned economy” combines public ownership and management of the means of production with centralised state planning, and can refer to a broad range of economic systems from the centralised Soviet-style command economy to participatory planning via workplace democracy.
In a centrally-planned economy, decisions regarding the quantity of goods and services to be produced as well as the allocation of output (distribution of goods and services) are planned in advanced by a planning agency.
According to Linda Kaucher, quoted in the New Statesman:
“[The Health and Social Care Act] effectively enforces competitive tendering, and thus privatisation and liberalisation i.e. opening to transnational bidders – a shift to US-style profit-prioritised health provision.”
“The TTIP ensures that the Health and Social Care Act has influence beyond UK borders. It gives the act international legal backing and sets the whole shift to privatisation in stone because once it is made law, it will be irreversible. Investor State Dispute Settlement (ISDS) laws, fundamentals of the agreement, allow corporations legal protection for their profits regardless of patient care performance, with the power to sue any public sector organisation or government that threatens their interest.”
“Once these ISDS tools are in place, lucrative contracts will be underwritten, even where a private provider is failing patients and the CCG wants a contract cancelled. In this case, the provider will be able to sue a CCG for future loss of earnings, thanks to the agreement, causing the loss of vast sums of taxpayer money on legal and administrative costs.”
Given also Andy Burnham’s reported opposition to TTIP, it would be absolutely ludicrous for the Socialist Health Association to adopt any position other than to oppose the parts of TTIP which are clearly to the detriment of the NHS. This situation, I feel, has arisen because “leaders” who’ve never set foot on a ward in a clinical capacity have little understanding of the social capital of its workforce: doctors, nurses, healthcare assistants, and all allied health professionals. It will be painful for members of the Socialist Health Association if they wish to collude knowingly with this non-socialist agenda. This is all the more telling as the Socialist Health Association seem bizarrely silent concerning the pay freeze for much of the nursing workforce.
And so the NHS strategy is beginning to take shape – parallel worlds of grassroots clinical service delivery (the unprofitable bit which costs money), and the more lucrative bit (where the State can use patient data taken from the general public on the basis of presumed con set to develop diagnostic tests and treatments, with the help of investment from venture capitalists and large charities, to export to the rest of the world under free trade agreements).
It is time for the Socialist Health Association to work out who exactly they represent?
TTIP makes intellectual asset stripping look like taking candy from a baby.
And the jury is out on Simon Stevens and the think tanks, many people will also say. But this is possibly a lost cause.
So we wait with baited breath for Ed Miliband’s reaction to David Cameron’s note about TTIP. Hopefully they will not simply agree to this agenda, ever increasing the democratic deficit.
The difficulties of the delayed diagnosis for dementia in primary care
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
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.
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
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.
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.
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.
Jeremy Hunt’s message on dementia should have been ‘screened’ for damaging myths
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.
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?
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.
Does the epidemiology of dementia constitute an 'epidemic', and does it warrant a "moral panic"?
The whole use of language surrounding the diagnosis of dementia matters, not least in the general context of how risk is communicated with the general public. A further problem is that medical terms often get adopted by more general media such as tabloids in a fairly non-discriminatory way. Take for example. the formal definition of an “epidemic” is:
“The occurrence in a community or region of cases of an illness, specific health- related behavior, or other health-related events clearly in excess of normal expectancy.”
(Greenland, Last and Porta, 2008)
According to Prof Paradis at Stanford University (2012), presented later by Paradis and colleagues (Paradis et al., 2012) in a public presentation, there has been an apparent ‘epidemic of epidemics‘, with no apparent restriction on the type of disease, on frequency or rates of affliction; there was no growth or contagion threshold. In the forthcoming decades, it is predicted that large numbers of people will enter the ages when the incidence rates of forms of dementia are the highest. People sixty years and over make up the most rapidly expanding segment of the population: in 2000, there were over 600 million persons aged 60 years or over worldwide, comprising just over 10% of the world population, and, by 2050 it is estimated that this figure will have tripled to nearly two billion older persons, comprising 22% of the world population (United Nations, 2007). Stephan and Blossom (2008) from the University of Cambridge state specifically that, “this ageing epidemic, while once limited to developed countries, is expected to become more marked in developing countries.” Supporting this, Sosa-Ortiz, Acosta-Castillo, and Prince (2012) propose that “global population aging has been one of the defining processes of the 20th century, with profound economic, political and social consequences. It is driving the current epidemic of dementia, both in terms of its extent and global distribution.” It could be that stakeholders in the research community, as Paradis (2011) proposes, are effectively competing for “social capital” (after Bourdieu, 1986). Bourdieu’s definition of ‘capital’ extends fat beyond the notion of material assets to capital that may be social, cultural or symbolic (Bourdieu 1986: cited in Navarro 2006).
In professional circles, the diagnosis of dementia enmeshes a plethora of ethical issues, as reviewed elegantly by Strech and colleagues (Strech et al., 2013):
- Risk of making a diagnosis too early or too late because of reasons related to differences in age- or gender-related disease frequencies
- Risk of making inappropriate diagnoses related to varying definitions of mild cognitive impairment
- Underestimation of the relatives’ experiences and assessments of the person with dementia
- Adequate point of making a diagnosis:
- Risk of disavowing signs of illness and disregarding advanced planning
- Respecting psychological burdens in breaking bad news
- Underestimation of the relatives’ experiences and assessments of the person with dementia Reasonableness of treatment indications:
- Overestimation of the effects of current pharmaceutical treatment options
- Considering challenges in balancing benefits and harms (side- effects)
- Not considering information from the patient’s relatives
- Adequate appreciation of the patient:
- Insufficient consideration of the patient as a person
- Insufficient consideration of existing preferences of the patient
- Problems concerning understanding and handling of patient autonomy
A correct early diagnosis may be clarifying, and appreciated by patients even without disease-modifying treatment, and a diagnosis could be valuable since it allows informed planning for the future (Kaduszkiewicz, Bachmann, and van den Bussche, 2008). A ‘positive test result’ indicating dementia of Alzheimer type (“DAT”) will almost certainly lead to extended follow-up., and that individual being plugged into the system. However, at worst, the diagnosis could lead to stigmatisation resulting in feelings of hopelessness, agony, and despair. The rôle of the clinician and support, such as family members, relatives, friends, and other members of the “dementia-friendly community”, will be to mitigate against this risk. From a legal perspective, a test result indicating DAT could potentially affect insurance premiums (sic), and the right for an individual to hold a driver’s licence, depending on the jurisdiction in question. Certainly, the ethical consequences in falsely diagnosed cases could be grave. Furthermore, as Matthson and colleagues explore (Matthson, Brax and Zetterberg, 2008), If a false positive diagnosis results in treatment, any harmful side effect is a serious infringe on the basic medical ethics principle of non-maleficience, accurately summarised in the Latin phrase primum non nocere (“first, do not harm”).
A salutory warning is provided by the well documented discussions of the communication of obesity as a public health issue. The very fast increase in mass media attention to obesity in the U.S. and beyond seems to have many of the elements of what social scientists call a ‘moral panic’. Moral panics are typical during times of rapid social change and involve an exaggeration or fabrication of risks, the use of disaster analogies, and the projection of societal anxieties onto a stigmatized group (Cohen, 1972; Goode and Ben-Yehuda, 1994). Moral panic is a term usually used to describe media presentation of something that has happened that the public will react to in a panicky manner. Moral panic has a tendency to exaggerate statistics and to create a ‘bogey-man’, known as a ‘folk-devil’ in sociological terms. In recent years moral panic and media presentation have covered a wide-ranging number of topics from HIV/AIDS in the 1980s to immigrants into the UK in the 2000’s. Moral panic goes back as far as World War One when the wartime government used the media to portray the Germans in a certain manner in the hope of provoking a response. The conduct of the media is pivotal in all this.
Despite arguably the very weak evidence that obesity represents a health crisis, scientific studies and news articles alike continue to treat the population’s weight gain as an “impending disaster”. A content analysis of 221 press articles discussing scientific studies of obesity found that over half employed alarming metaphors such as ‘time bomb’ (Saguy and Almeling, 2005). The fundamental problem is that there is no adequate treatment for the commonest type of dementia, DAT, and yet authors still talk in a language suggesting that it is possible to treat this epidemic successfully. For example, Korczyn and Vakhapova (2007) in their article entitled, “The prevention of the dementia epidemic”, cite polio as an example of an epidemic which was successfully ‘treated’.
“The last epidemic which has been fought with outstanding success is poliomyelitis. In order to win that war, the first step was to identify the cause, the polio virus. The next step, achieved within a few years, was to develop methods to cultivate the virus. Justifiably, J. Enders, T. H. Weller and F. C. Robbins were awarded the Nobel Prize in 1954 for this important discovery, which led to the development of immunization (sic) methods by A. B. Sabin and J. E. Salk.”
This is nothing new. Even the Department of Health (2002) has referred to the “obesity time bomb“:
“The growth of overweight and obesity in the population of our country – particularly amongst children – is a major concern. It is a health time bomb with the potential to explode over the next three decades…. Unless this time bomb is defused the consequences for the population’s health, the costs to the NHS and losses to the economy will be disastrous.” (Department of Health 2002)
In a remarkable paper, Bethan Evans (2010) considered the characterisation of obesity as a ‘threat to the future nation’ through considering obesity as a biopolitical problem – which simultaneously addresses the individual body and the ‘population’ (Foucault 1997) – and as a form of “pre-emptive politics”. According to Massumi (2007), pre-emptive action is not legitimised through ‘scientific truths’ established to know the future, but through the (re)production of ‘affective facts’ which make potential futures felt in the present. This ensures ‘any action taken to pre-empt a threat from emerging into a clear and present danger is legitimated by affective fact of fear, actual facts aside’ (Massumi 2007). An example of this use of language is seen in the report of Alzheimer’s Disease International (2012) on stigma in DAT. They clearly wish the reader to project to the future.
“Our healthcare and financial systems are not prepared for this epidemic. Dementia is the main cause of dependency in older people 1, and we will not have enough people to care for these large numbers of people with dementia. Globally, less than 1 in 4 people with dementia receive a formal diagnosis Without a diagnosis, few people receive appropriate care, treatment and support.”
The authors of that particular report cite numerous examples supporting their thesis than an early diagnosis is beneficial. For example, they state that, Scotland’s national dementia plan includes ‘overcoming the fear of dementia’ as one of its plan’s five key goals. This plan seeks to improve access to diagnosis by providing general practitioners with information and resources. If the “dementia epidemic” is a real one, according to Nepal and colleagues (Nepal et al., 2008), policy strategies to deal with the dementia “epidemic” could be informed in a number of ways. The prevalence depends upon interaction of age with other factors (e.g., co-morbidities, genetic or environmental factors) that in turn are subject to change. If onset of dementia could be postponed by modulating its risk factors, this could significantly affect its incidence (e.g. review, Treves and Korczyn, 2011). The need for longitudinal and population-based data that would enable analyses of resource allocation and cost implications has been identified (Wimo and Winblad, 2004). Conducting prospective intervention studies is an established approach to test alternative policy models in the field, but these studies require substantial investment in time and resources. Computer-based dynamic microsimulation models are an ideal alternative to these, as the computer simulations provide an opportunity to test a range of policy options in a virtual world in a shorter time frame.
Nonetheless, this debate is better ‘out than in’, and should be conducted openly for the benefit of those individuals with dementia, and their most immediate people in their community, including partners, friends, relatives or family members. Even charities have been known to use terms such as ‘epidemic’ and ‘timebomb’ in common parlance, and the debate above could go some way into explaining why the word “early” in dementia diagnosis has been replaced by “timely” in most UK circles. As we are all relatively new to the dementia journey, some more than others, it is appropriate we stop to think before rushing at full speed into an uncontrollable situation about communication.
[Thank you very much to @nchadborn and @peterdlrow for useful discussions on this issue through the medium of 'Twitter'.]
References
Alzheimer’s Disease International (2012) World Alzheimer Report 2012: Overcoming the stigma of dementia, London: Alzheimer’s Disease International, available at: http://www.alz.co.uk/research/WorldAlzheimerReport2012.pdf.
Bourdieu, P. (1986) The forms of capital. In J. Richardson (Ed.) Handbook of Theory and Research for the Sociology of Education (New York, Greenwood), 241-258.
Cohen, Stanley. (1972) Folk Devils and Moral Panics, Routledge: New York.
Department of Health (2002) Annual report of the chief medical officer 2002: Health check, on the state of the public health, available at: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/PublicationsAndStatistics/Publications/AnnualReports/DH_4006432.
Evans, B. (2010) “Anticipating fatness: childhood, affect and the pre-emptive ‘war on obesity’”, Trans Inst Br Geogr, 35, pp. 21–38.
Foucault, M. (1997) “Society must be defended: lectures at the Collège de France 1975–76 Translated by Macey, D.”, London: Penguin.
Goode E, Ben-Yehuda N. Moral Panics: The Social Construction of Deviance. Malden, MA: Blackwell Publishers, 1994.
Greenland, S., Last. J.M., and Porta, M.S.(2008) A dictionary of epidemiology, New York: Oxford University Press.
Kaduszkiewicz, H., Bachmann, C., and van den Bussche, H. (2008) “Telling “the truth” in dementia-Do attitude and approach of general practitioners and specialists differ?”, Patient Education and Counseling, vol. 70, no. 2, pp. 220–226.
Korczyn, A.D., and Vakhapova, V. (2007) “The prevention of the dementia epidemic”, J Neurol Sci, 15. pp. 257(1-2):2-4.
Massumi, B. (2007) The future birth of the affective fact: the political ontology of threat forthcoming, in Pollock ,G. (ed ), The ethics and politics of virtuality and indexicality, Cambridge: Cambridge University Press.
Mattsson, N., Brax, D., and Zetterberg, H. (2010) “To know or not to know: ethical issues related to early diagnosis of Alzheimer’s disease”, Int J Alzheimers Dis,. pii: 841941.
Navarro, Z. (2006) ‘In Search of Cultural Intepretation of Power’, IDS Bulletin 37(6): 11-22.
Nepal, B., Ranmuthugala, G., Brown, L., and Budge M. (2008) “Modelling costs of dementia in Australia: evidence, gaps, and needs”, Aust Health Rev, 32(3), pp. 479-87.
Paradis, E. (2011) Changing meanings of fat: Fat, obesity, epidemics and America’s children, Stanford University unpublished dissertation.
Paradis, E., Albert, M., Byrne, N., and Kuper, A. (2012) Changing Meaning of Epidemic and Pandemic in the Medical Literature, 1900-2010. American Sociological Association Conference, Denver, CO: August, available at: http://www.eliseparadis.com/files/EoE-DenverV1.pdf.
Saguy, A.C., and Almeling, R. (2005) ‘Fat devils and moral panics: news reporting on obesity science.’ Presented at the SOMAH workshop. UCLA Department of Sociology. June 1.
Sosa-Ortiz, A.L., Acosta-Castillo, I., and Prince, M.J. (2012) “Epidemiology of dementias and Alzheimer’s disease”, Arch Med Res., 43(8), pp. 600-8.
Stephan, B., and Brayne, C. (2008) Prevalence and projections of dementia, in: Excellence in Dementia Care: Principles and Practice (eds. Downs, M. and Bowers, B), Maidenhead (UK): Open University Press (McGraw-Hill Education).
Strech, D., Mertz, M., Knüppel, H., Neitzke, G., and Schmidhuber, M. (2013) “The full spectrum of ethical issues in dementia care: systematic qualitative review”, Br J Psychiatry, 202, pp. 400-6
Treves, T.A., and Korczyn, A.D. (2012) “Modeling the dementia epidemic”, CNS Neurosci Ther., 18(2):175-81.
Wimo, A., and Winblad, B. (2004) “Economic aspects on drug therapy of dementia”, Curr Pharm Des, 10, pp. 295-301.
United Nations Department of Economic and Social Affairs, Population Division (2007) World Population Ageing 2000. Repository at: http://www.un.org/esa/population/publications/publications.htm.
Many posts like this have originally appeared on the blog of the ‘Socialist Health Association’. For a biography of the author (Shibley), please go here.
My blog on dementia is here: http://livingwelldementia.org
Shibley’s CV is here.
Prof Alistair Burns, National Clinical Lead for Dementia, asks, “Do you have problems with your memory?”
It is widely anticipated that Scotland on Monday 3rd June 2013 will support England in calling for a ‘timely’ diagnosis for dementia, leading to an emphasis of person-centred care. The issue of how that diagnosis is made is therefore alive and well.
A G.P. is of course is incredibly busy. It is possibly the hardest job in medicine. In asking patients in a General Practice whether they are aware of memory problems, it’s like to looking for any horses once they have bolted. In terms of English policy, at least an attempt to find these bolted horses is presumably welcome, given that the general impression is that we are missing many horses bolting under our very eyes.
The question which Prof Burns proposes that Doctors in passing might ask is,
“Do you think you have any problems with your memory?”
For an overview of the complexity of the dementias, I can recommend the excellent chapter 24.2.2 by Prof John Hodges from the current Oxford Textbook of Medicine. You can see it chapter-24-4-21. I am grateful to Prof Hodges for including my paper in his chapter on a diagnosis of a common form of dementia.
G.P.s consistently have warned that they are terrified about their patients being “scared” to see their G.P., in case this question pops up ‘on the sly’ and the possibility of dementia is raised publicly in the “confidential” medical notes. In theory, any of the disease processes can affect any parts of the brain, affecting any number of the cognitive functions of the brain, behaviour and personality according to the precise distributed neuronal networks affected. This means that memory might not be the presenting feature of a dementia at all; it could be visuospatial difficulties or apraxia, behavioural problems, or isolated problems with planning. This question of course assumes that the patient can communicate the answer, and it is possible even that the method in which the answer is executed, even if it is nothing to do with memory, reveals a substantial language impairment (for example, the progressive primary aphasias, e.g. Savage et al., 2013). A patient with early Alzheimer’s disease is very likely to report memory problems, in anterograde memory, and the purpose of a brief question of a GP in a busy clinic is to detect at a unrefined way possible glaring “diagnoses” of Alzheimer’s disease. Loss of cognitive function in the elderly population is a common condition encountered in general medical practice, and fairly precise clinical diagnosis is feasible (e.g. Knopman, Boeve and Petersen, 2003). An unfortunate theoretical problem exists that a patient does indeed have memory problems but the patient is unaware of them. In a seminal paper by Starkstein and colleagues (Starkstein et al., 2006), the authors reported on how unawareness of cognitive deficits in Alzheimer’s disease is related might be related the severity of intellectual impairment, a phenomenon known as ‘anosognosia’.
The ideal is that a patient might report memory problems, when probed, but the question suffers from a lack of specificity. In other words, all sorts of people, even if they don’t have dementia, might at first answer “yes!” This inevitably will include what used to be called “the worried well”. Real memory problems could be caused by a whole manner of other conditions, as well as dementia, such as stroke, depression or an underactive thyroid. It could conceivably a “transient global amnesia”, and the exact aetiology of this is currently considered to be uncertain. A mild cognitive impairment (“MCI”) 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). In addition to presentations featuring memory impairment, symptoms in other cognitive domains (e.g. executive function, language, or visuospatial) have been identified. Indeed, in humans, heterogeneity in the decline of hippocampal-dependent episodic memory is observed during aging, and animal models now exist for this phenomenon (Foster, 2012).
There is also a problem that individuals with a dementia syndrome sometimes do not exhibit any memory problems. Indeed, as reviewed by Hornberger and Piquet (2012), over the last twenty years or so, however, the clinical view has been that episodic memory processing is relatively intact in the frontotemporal dementia syndrome; but it is perhaps also worth noting that these authors also note that recent evidence questions the validity of preserved episodic memory in frontotemporal dementia, particularly in behavioural variant frontotemporal dementia, a progressive syndrome characterised in its early stages by changes in personality and behaviour, and which indeed gets confused with common adult psychiatric conditions (Pose et al., 2013). It is of course theoretically possible that individuals may have a subclinical form of dementia, where there are no florid memory symptoms for example, but there is an underlying cause (e.g. Morvan’s syndrome, a rare complex syndrome with antibodies to the potassium-channel gated complex producing a dementia involving cognitive problems (Loukaides et al., 2012)), or a paraneoplastic limbic encephalitis producing a dementia (Gultekin et al., 2010). Indeed, in the paraneoplastic dementias, mild cognitive deficits may present before a florid dementia or before the presentation even of the underlying malignancy, for which a full hunt might later then be instigated.
Full-blown screening on a national scale would fundamentally depend on finding a cheap test for finding individuals at risk of later developing the disease. Any quick question is immediately going to run into problems in that dementia is such a wide diagnostic group. Certainly, the question is not sufficient on its own. For example, in an appropriate patient, it might be sensible to ask if the patient has seen things which are not there (in the hope of identifying visual hallucinations as in diffuse Lewy Body Dementia, e.g. Gaig et al., 2011). Even for the most common type of dementia, there is a very active debate whether there might be a reliable prodromal or preclinical phase of Alzheimer’s disease, when changes are taking place even without overt symptoms. Molineuvo and colleagues (Molinuevo et al., 2012), consistent with previous findings, indeed suggest that the preclinical stage is biologically active and that there may be structural changes when amyloid is starting its deposition, reflected in changes in concentrations of markers in cerebrospinal fluid or cortical thickness.
Clearly, investing a lot of time, money and effort in using such techniques currently would be considered impractical in any booming economy (which we do not have), especially given that the cost-impact implications of managing patients with dementia in the community are unclear (Brilleman et al., 2013), and the very modest effects of treatments to improve memory such as the cholinesterase inhibitors have in fact been well known for some considerable time (Holden and Kelly, 2002). 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: only approximately 5-10% and most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009). If one takes the point of view in that the existence of memory symptoms above a certain age might cause ‘alarm bells’ about the need for further investigation, such as specialist opinion about neuroimaging, cognitive psychometry, or even cerebrospinal fluid or brain biopsy (the latter conceivably in the case of cerebral vasculitis or prion disease), such an approach might be worthwhile. However, such a strategy is hugely dependent on the quality of clinicians in primary care and beyond in the NHS, where quality is not a function of economic competition. Quality of dementia care depends on a clinician’s aptitude in taking a targeted history, examination, investigations and management plan.
So, to all intents and purposes, this simple question is dirt cheap, but fails somewhat on specificity and sensitivity. And it all might be pretty innocent enough, if individuals with a genuine diagnosis of dementia are able to access routes enabling them to live well through person-centred care. However, as it is presented, this is potentially a ‘huge ask’ if politicians raise expectations, and do not allocate resources in primary care and specialist dementia and cognitive disorders clinics to match. While the reported underreporting of dementia in the community is not a trivial issue, the demands concerning adequate care of individuals successfully found to be identified with a dementia are likely to be substantial, and for which no convincing impact assessment data have curiously ever been published. Diagnosing lots of dementia might become somebody else’s problem for management if there are inadequate resources; and by that stage this current Government and key personnel might have even moved on, of course.
Please direct comments to Prof @ABurns1907 on Twitter, and not me, if you should like to contribute to this debate. Thank you.
References
Brilleman SL, Purdy S, Salisbury C, Windmeijer F, Gravelle H, and Hollinghurst S. (2013) Implications of comorbidity for primary care costs in the UK: a retrospective observational study, Br J Gen Pract, 63(609), pp. e274-82.
Foster, T.C. (2012) Dissecting the age-related decline on spatial learning and memory tasks in rodent models: N-methyl-D-aspartate receptors and voltage-dependent Ca2+ channels in senescent synaptic plasticity, Prog Neurobiol, 96(3), pp. 283 – 303.
Gaig, C., Valldeoriola, F., Gelpi, E., Ezquerra, M., Llufriu, S., Buongiorno, M., Rey, M.J., Martí, M.J., Graus, F., and Tolosa, E. (2011) Rapidly progressive diffuse Lewy body disease, Mov Disord, 26(7), pp. 1316 – 1323.
Gultekin, S.H., Rosenfeld, M.R., Voltz, R., Eichen, J., Posner, J.B., and Dalmau, J. Paraneoplastic limbic encephalitis: neurological symptoms, immunological findings and tumour association in 50 patients, Brain, 123 (Pt 7), pp. 1481 – 1494.
Holden, M., and Kelly, C. (2002)) Use of the cholinesterase inhibitors in dementia, Advances in Psychiatric Treatment, 8, pp. 89-96.
Hornberger M, and Piguet O. (2012) Episodic memory in frontotemporal dementia: a critical review, Brain, 135 (Pt 3), pp. 678-92.
Knopman, DS, Boeve BF, and Petersen RC. (2003) Essentials of the proper diagnoses of mild cognitive impairment, dementia, and major subtypes of dementia. Mayo Clin Proc, 78(10), pp. 1290-308.
Loukaides, P., Schiza, N., Pettingill, P., Palazis, L., Vounou, E., Vincent, A., aand Kleopa, K.A. (2012) Morvan’s syndrome associated with antibodies to multiple components of the voltage-gated potassium channel complex, J Neurol Sci, 312(1-2), pp. 52-6.
Mitchell, A.J., and Shiri-Feshki, M. (2009) Rate of progression of mild cognitive impairment to dementia -meta-analysis of 41 robust inception cohort studies. Acta Psychiatr Scand, 119(4), pp. 252-65.
Molinuevo, J.L., Sánchez-Valle, R., Lladó, A., Fortea, J., Bartrés-Faz, D., Rami, L. (2012) Identifying earlier Alzheimer’s disease: insights from the preclinical and prodromal phases, Neurodegener Dis, 10(1-4), pp. 158-60.
Nelson, A.P., and O’Connor, M.G. (2008) Mild cognitive impairment: a neuropsychological perspective, CNS Spectr, 13(1), pp. 56-64.
Pose, M., Cetkovich, M., Gleichgerrcht, E., Ibáñez, A., Torralva, T., and Manes F. (2013) The overlap of symptomatic dimensions between frontotemporal dementia and several psychiatric disorders that appear in late adulthood, Int Rev Psychiatry, 25(2), pp. 159-167.
Savage, S., Hsieh, S., Leslie, F., Foxe, D., Piguet, O., and Hodges, J.R. (2013) Distinguishing subtypes in primary progressive aphasia: application of the Sydney language battery, Dement Geriatr Cogn Disord, 35(3-4), pp. 208-18.
