44% of people with dementia feel they lose friends after being diagnosed

Shibley Rahman 1 Comment

Dementia 2012, the first in a series of annual reports from the Alzheimer’s Society, described how well people are living with dementia in 2012 in England, Wales and Northern Ireland.

According to page v of the ‘Executive Summary’. the sample comprised a YouGov poll in December 2011 involving 2070 individuals, but also “drew on existing research and current work”, and polling done by the Society with people in the early stages of dementia in a survey distributed through the Society’s support workers in England, Wales and Northern Ireland. A number for this last group is not stipulated. It is unclear how large the cumulative sample is for each of the key findings, therefore.

This work helps to provide a slide of the key findings underpinning the need for ‘Dementia Friends’, an Alzheimer’s Society and Public Health initiative. For example, one such slide from a presentation available on the internet is:

Slide 1

In detail the findings reported are as follows.

The survey shows that respondents reported losing friends after their diagnosis or being unable to tell them. Nearly half (44%) of respondents said they had either lost most of their friends, some of their friends, or hadn’t been able to tell them.

When asked if they lost friends after their diagnosis of dementia 12% of respondents said yes, most of them, 28% said yes, some of them, and 47% said no.

4% of respondents reported that they haven’t told their friends and 5% didn’t know.

Should we surprised if “44% of people with dementia feel they lose their friends after being diagnosed?”

I remember when I became disabled and went into recovery from severe alcohol dependence syndrome at the same time. Employment was far from my mind. At the time, my friends circle did severely contract, but I should like to think that the friends I am left with are not superficial friends. They are people I suspect would’ve stuck with me through thick and thin anyway.

They are not ‘judgmental’.

Receiving a diagnosis of dementia is not like receiving a criminal conviction. Norman McNamara once joked with me saying he had not been ‘convicted of dementia’ in explaining why he preferred the term ‘GPS trackers’ to ‘GPS tagging’, as a mitigation against wandering.

When I was at the first Alzheimer’s Show in London earlier this year, I met the wife of someone who had received a diagnosis if dementia, and they had not told their friends of their diagnosis for about years.

I suppose that if you have mild memory symptoms as a feature of Alzheimer’s disease, you might not need to tell people that you have a diagnosis, in the same way that you might have an indwelling catheter for multiple sclerosis.

The memory loss may not be immediately obvious.

But this is part of my overall criticism of ‘dementia friendly communities’ – to be ‘friendly’ to people living with dementia, howsoever that is defined, you need to identify such individuals reasonably reliably. I do not buy into this ‘if you see an old biddy have a difficulty, think they might dementia'; particularly since dementia is not confined to older people.

The statistic “44% of people with dementia feel they lose their friends after being diagnosed” becomes even more complicated once you consider various factors which impact upon this finding potentially.

How deep was the friendship in the first place?

And of course what type of dementia? Frontal dementia (behavioural variant frontotemporal dementia) is reasonably common in  the younger age group epitomised by progressive behavioural and personality changes.

The thing about this condition, however, is that the person with dementia very often has little or no insight into his change in personality (with the presentation having been noticed by a close friend, or even husband/wife).

Also another feature of conditions affecting the frontal lobes (the part of the brain near the very front of the head) is that such people with problems with the frontal lobe can be extremely bad at making ‘cognitive estimates’.

This was first shown by Prof Tim Shallice and colleagues in the late 1970s: e.g. “how many lamp posts are there on the M1?” “Forty.”

And in the presentation of behavioural variant frontotemporal dementia, it could be obvious to friends that something might be happening as your personality was changing. Therefore, in this scenario, it might be reasonably foreseeable that friends drift away.

Why should people who were friends no longer be bothered? One reason is that ‘they don’t want the hassle’. Maybe staying friends might at later stage involve some sort of requested financial support? Or maybe the former friends don’t want to be involved in ‘uncomfortable discussions’ about dementia?

This is indeed where an initiative to recruit one million ‘Dementia Friends’ through information sessions are useful to dispel the myths and prejudice, as mitigation against stigma and discrimination?

But one of the outcomes which ‘Dementia Friends’ will have to evaluate is whether this project encourages people to ‘befriend’ people with dementia. It is not a mandatory outcome, although people are encouraged to think of this as one of the possible commitments/actions from the information session.

In Japan, befriending has been a successful policy, but the entire care system is much more convincing than our one which has been starved of funds in parallel with Dementia Friends receiving its funding from the Department of Health and Social Care Fund.

But, anyway, would one necessarily expect the friends that one has lost through disclosing a diagnosis of dementia to be matched by friends obtained through ‘Dementia Friends’ in terms of quality? It is of course impossible to answer this question.

This topic is of course closely entwined with the subject of the 2013 report on loneliness. Encouraging participation in wider networks including social networks such as Facebook and Twitter can in the real world help to overcome this.

But with leading politicians continuing to use words such as “horrific”, “evil”, “devastating” in relation to dementia, is it any wonder that, whatever other initiatives, people who have received a diagnosis of dementia are resistant to tell their friends because of the potential reaction?

The statistic “44% of people with dementia feel they lose their friends after being diagnosed” sounds like a typical fundraising slogan, and indeed can be used to justify a national project such as ‘Dementia Friends’.

The proof of the pudding comes in the eating. Will a significantly fewer number feel that they lose friends after being diagnosed (whether they actually lose friends) as a result of “Dementia Friends”? Whilst, as I have explored elsewhere, there is a lot to commend ‘Dementia Friends’, I think it would be wrong to raise this expectation.

And if a significantly fewer number do not feel that they lose friends after being diagnosed, despite “Dementia Friends”, it would be interesting to explore further why. For example, it could be that there are fewer home visits by health professionals, although it is normally argued that ‘anyone who needs a home visit gets one’.

The statistic though acts a useful cover for a quite sinister discussion.

 

 

 

 

Why not have a global summit on living well with dementia?

Shibley Rahman 1 Comment

Yesterday, the UK Department of Health plumbed to new low depths.

Actually, the week had started well. The Department’s 2014/5 corporate strategy which they had published included ageing and living well with dementia as a top priority.

The day before yesterday, the All Party Parliamentary Group on dementia had produced a thought provoking report which helped to map out a future landscape for English dementia policy.

This had included care coordinators, which I think would be very useful provided we get the appointment of such a rôle correct with people with the right skills, behaviours and experiences.

This included a proposal for “integrated care“. I personally feel we should attempt to introduce a large scale cultural transformation towards whole person care.

But why on earth nothing on specialist nurses as a critical rôle in the workforce?

Is it because the APPG report was hugely biased towards the Alzheimer’s Society not other large dementia charities such as Dementia UK?

Many of us are rightly concerned about the provision of specialist clinical nurses such as Admiral nurses.

But the summit yesterday #globaldementia was painfully bad in intellectual balance. The Department of Health Twitter account for the event was clearly manned by people who have little experience in the current policy of dementia in England.

Their “live blog” was as fascinating as watching a mouldy slice of Stilton get even more mouldy.

The number of tweets by members of the Department of Health far outweighed the tweets from elsewhere, relative to the sheer numbers in each of the two populations. I meanwhile continued to tweet a not inconsiderable number of tweets, including my own blogposts on language, whole person care, and social prescribing.

And this for me was the most telling slide of what has gone fundamentally wrong.

The use of toxic language to meet targets:

live stream

I have worked in research for dementia not continuously for seventeen years, including the top mark in my MBA in marketing.

I am quite sensitive to corporate marketing.

The drug companies need to come clean and to be honest.

They have had two decades of trying to produce a medication to slow progression of dementia. NICE is currently unable to recommend any anti-dementia drug that slows progression, albeit can improve symptoms for a few months.

The opportunity cost for this is incredible.

Both Cameron and Hunt produced unedifying language about dementia such as its effects on “humanity” and “horrible”, while unashamedly talking about the stigma of the wide ranging condition.

One of the key messages of “Dementia Friends“, a £2.4 million funded programme which appeared from nowhere in the current Government by the Department of Health and Social Care Fund, but “an Alzheimer’s Society initiative” (when not ambushed by the phrase “Public Health initiative”), is that “you can live well with dementia”.

Someone please tell this to Dr Dennis Gillings.

THE lowest point of yesterday was Gillings, telling Helga Rohrer, a passionate advocate and person living with dementia, about the need for ‘translationary research’ in response to a direct question about living well with dementia. Such research has been touted as finding a cure for dementia in the forthcoming decades.

He is the “World Dementia Envoy” for a panel which does not even have a direct patient or carer representative.

How completely offensive.

Martin Prince gave a fairly standard patter on an economic situation analysis of intervention after diagnosis. Well respected, he ignored completely the notion of any intervention on the wellbeing of a person with dementia.

But think this through. This would have involved an appreciation of how to measure the effect of an intervention of wellbeing in dementia. What type of dementia for example?

And do drugs affect wellbeing? The answer is actually by and large no.

There have been reported effects of memantine helping with wellbeing in dementia, presumably through affecting predominantly neuropsychiatric symptoms in certain patients (e.g. psychosis or aggression)?

But the drugs thus far have modest COGNITIVE effects. Prof Martin Rossor whom I respect wholly was right not to overinflate their importance, but right to draw attention on some value for some.

Yesterday was a well orchestrated cover, as a “legacy event” for the G8, for the current Government marketing for Pharma.

In the guise of the meme ‘private and public partnership”, please read “Pharma would like some of your State welfare benefits?”

The whole spectacle was unedifying.

It was an insult to people living with dementia.

It was an insult to a social care system which has been stripped of money during this current Government. Why don’t we have an ‘awareness’ campaign for that then?

Put quite simply, it was an obscene insult to many in the field, including academics in wellbeing.

It consolidated the notion of people with dementia being used for “tokenism” purposes.

Looking on the bright side, it was an outstanding example of “tokenism” and “non-participation”, compared to “citizen power”, as per Shelly Arnstein’s work.

I’ll continue blogging on my blog, which I increasingly see as blogging the other side of the story on dementia, while the others shill for Britain. Some unpaid.

Finally, I’ll leave the last word to @KateSwaffer, Consumer Champion for Alzheimer’s Australia, and a person living with dementia:

Kate Swaffer

Time for a change in government.

 

Acknowledgements: It was Val Hudson who first alerted me to Arnstein’s work; this was a Twitter thread involving me, Val and John Ashton. Val has a longstanding and wide ranging background in dementia, including working for the late great Prof Sir Martin Roth, Emeritus Chair of Psychiatry at the University of Cambridge, inter alia.

A large scale cultural national transformation is needed to drive whole person care in dementia

Shibley Rahman 0 Comments

I’ll be blunt. It’s my dream for the #NHS to run a proactive not reactive service, promoting the whole person living well with dementia.

The Australian jurisdiction have recently provided some helpful inroads here.

The narrative has changed from one of incessantly referring to people living with dementia as a ‘burden’ on the rest of society. For example, to push a sense of urgency that we have an ‘ageing population timebomb’, the cost of the ageing people with dementia flies completely in the face of other public health campaigns which emphasise, for example, “dementia is not a natural part of ageing”.

“The NHS as a whole and individual hospitals recognise that dementia is a significant, growing and costly problem for them” is the opening gambit of the Alzheimer’s Society “Counting the cost” report.

An easy to use online resource, Valuing People from Alzheimer’s Australia has been developed in collaboration with community aged care providers who have helpful in stablishing a person centred approach to service delivery.

Person centred care is a development to provide ervices provided in a way that is respectful of, and responsive to, the preferences, needs and values of people and those in the care and support network.

AlzAus

I cannot recommend this resource highly enough. The main source is here.

In fact, it summarises succinctly the conclusions I came to after my exploration of personhood in my book ‘Living well with dementia’.  The late great Prof Tom Kitwood said of personhood, “It is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust”.

If a Labour government is elected on May 8th 2015, the first necessary step is to legislate for the repeal of the Health and Social Care Act (2012) and to enact new legislation to allow for integrated packages provided they are justified by clinical outcome. For this to happen, it will be necessary for Labour to undergo a ‘conscious uncoupling’ from all the baggage of EU competition law. For this, it is essential also that the UK government is able to carve out provisions from the investor protection clauses and/or the rest of the EU-US free trade treaty (TTIP).

The “whole person care model” has become attractive to those who wish to break down silos between different physical health, mental health and social care “silos”. It has been worked up in various guises by various parties.

A helpful construct is provided in the document, “Healthcare for complex populations: the power of whole-person care models” originally published by Booz & Company in 2013.

A major problem with dementia care, however it is delivered, is that it is full of divisions: public vs private care, fragmented vs national care, competitive vs integrated models.  Operating in silos can’t work because of the nature of the dementias: the mood and cognition of a person with dementia profoundly affects how they might interact with the outside world, for example perform activities in the outside world. And we know that taking part in leisure activities can promote a good quality of life.

Their model is, though, a useful starting point.

Booz

Dementia cannot be only addressed by the medical model. In fact, it is my sincere belief that it would be highly dangerous to put all your eggs in the physical health basket, without due attention to mental health or social care. For example, last week in Stockholm, the international conference on Parkinson’s disease, a condition typified by a resting tremor, rigidity and slowness of movement, which can progress to a dementia, often is found to have as heralding symptoms changes in cognition and mood.

So it’s pretty clear to me that we will have to embark on a system of multidisciplinary professionals who could all have a part to play in the wellbeing of a person with dementia, depending on his or her own stage in life, and ability or need to live independently. “Care coordinators” have traditionally been defined incredibly badly, but we do need such an identity to navigate people with dementia, and actors in the care and support network, through the maze.

“Care collaborators” in their construct are very wonkily articulated, like “pre-distribution”, but the concept is not stupid. In fact it is very good. One idea is that people with dementia could act as support as other people with dementia, for people on receiving a diagnosis of dementia. The rationale for this is that people living with long term conditions, such as for example recovery from alcoholism, often draw much support from other people living with other long term conditions, away from a medical model. There needs to be safeguards in the system to safeguard against a lot of unpaid goodwill (which currently exists in the system.)

Informatics would have a really helpful rôle here, being worked up in telecare and assistive technology. But even simple disruptions such as a person living with dementia at risk of falling from problems with spatial depth perception being able to ‘hot email’ a care coordinator about perceived problems could trigger, say, an early warning system. And with various agents in the provision of care being involved in differing extents it will be up to NHS England to work out how best to implement a single accountable tariff. Falls are just the sort of ‘outcome metric’ which could be used to determine whether this policy of ‘whole person care’ for people living with dementia is working. And, even though everyone ‘trots it out’, the performance on avoided hospital admissions could be put into the mixer. It’s already well recognised that people with dementia can become very disoriented in hospital, and, and despite the best efforts of those trying to improve the acute care pathway, people with dementia can often be better off away from hospital in the community. But it’s imperative that care in the community is not a second-rate service compared to secondary care, and proper resourcing of community whole person care is essential for this before any reconfiguration in acute hospital services.

But the private sector has become such a ‘bogey term’ after arguably the current Government overplayed their hand with the £3bn Act of parliament which turbo-boosted a transfer of resource allocation from the public to private sector. Any incoming government will have to be particularly sensitive to this, as this is a risk in strategy for the NHS.

In October 2005, Harold Sirkin, Perry Keenan and Alan Jackson published a highly influential article in the Harvard Business Review entitled “The hard side of change management“. Whilst much play has in fact been made of politicians having to be distant from running the NHS, a completely lubricous line of attack when it is alleged that Jeremy Hunt talks regularly to senior managers and regulators in the NHS, the benefits of clear political leadership from an incoming Labour government are clear.

Andy Burnham MP has already nailed his colours to the mast of ‘whole person care’ on various occasions, and it is clear that the success of this ambitious large scale transformation depends on clear leadership and teamwork from bright managers. Take for example the DICE criteria from Sirkin, Keenan and Jackson:

DICE

But this is perfectly possible from an incoming Government. The National Health Service has a chance to lead on something truly innovative, learning from the experience of other jurisdictions such as Australia and the USA.

As alluded to in the new resource from the Alzheimer’s Australia, this cultural change will require substantial ‘unfreezing’ from the current mindset for provision of care for people with dementia. It will require a change in explicit and implicit sources of knowledge and behaviours, and will need to be carefully brought about by learning from the successes and failures of pockets of implementation.

The whole project’s pretty high risk, but the rewards for people living with dementia, and members of the care and support network, are potentially vast. But it does require the implementation of a very clear vision.

 

 

@legalaware

 

[First posted on the ‘Living well with dementia‘ blog]

“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.

“It’s possible to live well with dementia”: a crucial message in @DementiaFriends

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.

 

This is the plucky group of persons living with dementia at the Alzheimer’s Disease International meeting in Puerto Rico in 2014.

That’s right. They’re not there as representatives of any organisation, but there on their own as individuals as members of the “Dementia Action Alliance”.

They happen to have received a diagnosis of dementia.

So why is this “it’s possible to live well with dementia” even a statement in “Dementia Friends“, a Public Health England initiative delivered by the Alzheimer’s Society. It should be obvious shouldn’t it?

The answer comes in the ‘icebreaker’ exercise at the beginning of the Dementia Friends session. Attendees are asked to think of the first word that springs to mind when they think of dementia.

“Suffering”

“Horrible”

“Terrible”

And indeed it would be wrong to ignore how distressing a diagnosis of dementia can be for certain individuals with dementia. Take for example people with diffuse Lewy Body disease, typically individuals in the younger age bracket in their 50s, who have complete insight into the condition, realise that memory might be going, and are exasperated at the ‘night terrors’.

‘Living well with dementia’, conversely, is supposed to counteract the negative word associations may people have about dementia. It’s felt that such negative connotations contribute to the stigma individuals with dementia can experience after their diagnosis. This can ultimately lead to discrimination, hence the need for communities which are welcoming to such individuals.

It also happens to be the name of the English dementia strategy, which was introduced by the last Government in 2009. Dementia as a policy plank now in England has full cross party support, and the current ‘Prime Minister’s Dementia Challenge’ is due to come to an end next March 2015.

In the panel session above, somebody asks whether a dementia diagnosis should ever be withheld from a person with dementia. Kate Swaffer, living with dementia herself, believes firmly ‘no’, saying that one would never dream of withholding a diagnosis of cancer.

Policy in this jurisdiction and others has given due attention to whether the person receiving the diagnosis of dementia actually benefits – put simply is it ‘disabling’ rather than ‘enabling’.

Does it shut more doors than it opens?

But even if one takes the view that dementia is a disability which one is perfectly entitled to do on reading the case law surrounding the Equality Act (2010), the issue of making reasonable adjustments around this particular disability then becomes not a trivial one.

Richard Taylor elegantly advances this argument. Big Pharma have been impressively unimpressive in the offerings for dementia, although some report some substantial short-term symptomatic benefit for symptoms.

The National Institute for Clinical Excellence (NICE) have stated clearly that such medications do not slow the progression of the condition.

But they did offer very recently some enormously useful guidance on supporting people to live well with dementia.

And this issue is a push-pull one. Given the relative inefficacy of the medical interventions, one is possibly attracted to the things one might do to promote living well with dementia.

In a world of ‘whole person care’, where there might be care coordinators helping to break down the silos of service provision for people living with dementia, we might arrive at a destination where people with dementia do receive some help.

This might include assistive technologies, other innovations, or access to advocacy services.

And for a person who has received a diagnosis of dementia, Richard Taylor argues that trust is pivotal. This is somewhat related to Kate Swaffer’s views that ‘support groups’ (for carers) might inadvertently encourage division.

Whilst members of the support and care network clearly have substantial ‘needs’, not least in behavioural and psychological considerations, promoting quality of life for people living with dementia is clearly going to be a vital policy plank for the future.

Some inroads have already been made, as I recently discussed here, but there is a lot yet further still to do I feel.

Dementia is caused by diseases of the brain

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.

 

That ‘Dementia is caused by diseases of the brain’ may seem like a pretty innocuous statement.

There have been numerous attempts at looking at the numbers of the different causes of dementia, varying in overall success over the years.

One study “Prevalence of dementia subtypes: A 30-year retrospective survey of neuropathological reports” came from Hans Brunnström, Lars Gustafson, Ulla Passant and Elisabet Englundemail in 2008.

The authors  investigated the distribution of neuropathologically defined dementia subtypes among individuals with dementia disorder.

The neuropathological reports were studied on all patients (n = 524; 55.3% females; median age 80, range 39–102 years) with clinically diagnosed dementia disorder who underwent complete post mortem examination including neuropathological examination within the Department of Pathology at the University Hospital in Lund, Sweden, during the years 1974–2004.

The neuropathological diagnosis was Alzheimer’s disease in 42.0% of the cases, vascular dementia in 23.7%, dementia of combined Alzheimer and vascular pathology in 21.6%, and frontotemporal dementia in 4.0% of the patients.

Different types of dementia (and factsheets about them) are summarised in this page from the Alzheimer’s Society.

Part of the problems with the statement comes from the definition of ‘dementia’.

For example, a WHO definition is provided thus:

“Dementia is a syndrome – usually of a chronic or progressive nature – in which there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation.”

However academics and practitioners over the years have squabbled over the nuances of the definition. Should the definition compulsorily include memory in the early stages? Most people I think would agree ‘no’, if only because of the behavioural variant of frontotemporal dementia where individuals present with an insidious progressive change in behaviour and personality in the early stages can report no changes in their memory. And can it be reversible?

This is Prof John Hodges’ list of the dementias presented in the current Oxford Textbook of Medicine, which is helpful.

List

But problems in metabolism from the rest of the body can cause problems in brain function. The list is a long one, and an introduction to this topic here.

And antibodies raised in cancers which haven’t revealed themselves yet can cause a dementia-like picture.

Paraneoplastic limbic encephalitis (PLE) is a rare disorder characterized by personality changes, irritability, depression, seizures, memory loss and sometimes dementia.

This diagnosis is difficult because clinical markers are often lacking, and symptoms usually precede the diagnosis of cancer or mimic other complications.

A range of tumours outside of the brain can be implicated in this complicated conditions, including oesophagus, lung, bladder, colon, lung, thymus and breast.

This is for example a helpful summary table from Gultekin and colleagues in Brain. 2000 Jul;123 ( Pt 7):1481-94.

Table 1

They can be associated with markers in the fluid surrounding the spinal cord, and in magnetic resonance imaging of the brain. But to call them “diseases of the brain” would be a massive over-simplification?

And there might not be a biological disease at all causing profound symptoms.

McKay and Kopelman’s article “Psychogenic amnesia: when memory complaints are medically unexplained” in Advances in psychiatric treatment (2009) [vol. 15, 152–158 doi: 10.1192/apt.bp.105.001586] is an extremely useful introduction.

Amnesia is a particular cognitive problem. Amnesia has been defined as ‘an abnormal mental state in which memory and learning are affected out of all proportion to other cognitive functions in an otherwise alert and responsive patient’ (Victor 1971).

According to them, “A number of terms have been used to describe medically unexplained amnesia, including ‘hysterical’, ‘psychogenic’, ‘dissociative’ and ‘functional’. Each requires the exclusion of an underlying neurological cause and the identification of a precipitating stress that has resulted in amnesia. Unfortunately, the presence of amnesia may make it difficult to identify the stress until either informants have come forward or the amnesia itself has resolved”.

They helpfully provide this scheme for looking at the causes.

Amnesia

Hans J. Markowitsch looked at “Psychogenic amnesia” in an extremely useful article in NeuroImage 20 (2003) S132–S138.

Markowitsch, a world leader in memory, kicked off with the realisation that sometimes a disease of the brain, in terms of an identifiable pathology, often could not be located for quite profound symptoms.

“Commonly, memory disturbances are related to organic brain damage. Nevertheless, especially the old psychiatric literature provides numerous examples of patients with selective amnesia due to what at that time was preferentially named hysteria and which implied that both environmental circumstances and personality traits influence bodily and brain states to a considerable degree. Awareness of the existence of relations between cognition, soma, and psyche has increased especially in recent times
and has created the research branch named cognitive neuropsychiatry.”

Mizutani and colleagues (2014) have indeed reported a case which could to all intents-and-purposes have been caused by a disease of the brain.

Its cause is an overactive thyroid, a gland in the neck.

“We report the case of a 20-year-old Japanese woman with no psychiatric history with apparent dissociativesymptoms. These consisted of amnesia for episodes of shoplifting behaviors and a suicide attempt, developing together with an exacerbation of Graves’ hyperthyroidism. Patients with Graves’ disease frequently manifest various psychiatric disorders; however, very few reports have described dissociative disorder due to this disease. Along with other possible causes, for example, encephalopathy associated with autoimmune thyroid disease, clinicians should be aware of this possibility.”

Dissociative disorders can take many forms – see this factsheet from Mind.

It is thought that dissociative amnesia is amnesia caused by trauma or stress, resulting in an inability to recall important personal information.

Therefore ‘Dementia is caused by diseases of the brain’ is not in fact an innocuous statement. But for the purposes of “Dementia Friends”, it is.

Further references

Victor M, Adams RD, Collins GH (1971) The Wernicke–Korsakoff syndrome. F.A. Davis.

Mizutani K, Nishimura K, Ichihara A, Ishigooka J. Dissociative disorder due to Graves’ hyperthyroidism: a case report. (2014) Gen Hosp Psychiatry, Mar 19. pii: S0163-8343(14)00073-5. doi: 10.1016/j.genhosppsych.2014.03.010.

Dementia is not just about losing your memory

Shibley Rahman 1 Comment

“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.

 

 

Dementia is a general term for a number of progressive diseases affecting over 800,000 people living in the UK, it is estimated.

The heart pumps blood around the circulation.

The liver is involved in making things and breaking down things in metabolism.

The functions of the brain are wide ranging.

There are about 100 billion nerve cells called neurones in the brain. Some of the connections between them indeed do nothing. It has been a conundrum of modern neuroscience to work out why so much intense connectivity is devoted to the brain in humans, compared to other animals.

For example, there’s a part of the brain involved in vision, near the back of the head, known as the ‘occipital cortex’. Horace Barlow, now Professor Emeritus in physiology at the University of Cambridge, who indeed supervised Prof Colin Blakemore, Professor Emeritus in physiology at the University of Oxford, in fact asked the very question which exemplifies one of the major problems with understanding our brain.

That is, why does the brain devote so many neurones in the occipital cortex to vision, when the functions such as colour and movement tracking are indeed in the eye of a fly.

The answer Barlow felt, and subsequently agreed to by many eminent people around the world, is that the brain is somehow involved in solving “the binding problem”. For example, when we perceive a bumble bee in front of us, we can somehow combine the colour, movement and shape (for example) of a moving bumble bee, together with it buzzing.

The brain combines these separate attributes into one giant perception, known as ‘gestalt’.

What an individual with dementia notices differently to before, on account of his or her dementia, will depend on the part of the brain which is affected. Indeed, cognitive neurologists are able to identify which part of the brain is likely to be affected from this constellation of symptoms, in much the same way cardiologists can identify the precise defect in the heart from hearing a murmur with a stethoscope.

In a dementia known as ‘posterior cortical atrophy’, the part of the brain involved with higher order visual processing can be affected, leading to real problems in perception. For example, that’s why the well known author has trouble in recognising coins from their shape from touching them in his pocket. This phenomenon is known as ‘agnosia’, meaning literally ‘lack of knowing’.

If a part of the brain which is deeply involved in personality and behaviour, it would not be a big surprise if that function is affected in a dementia which selectively goes for that part of the brain at first. That’s indeed what I showed and published in an international journal in 1999, for behavioural variant frontotemporal dementia, one of the young onset dementias.

If the circuits involved in encoding a new memory or learning, or retrieving short term memories are affected, a person living with dementia might have problems with these functions. That’s indeed what happens in the most common type of dementia in the world, the dementia of the Alzheimer Type. This arises in a part of the brain near the ear.

If the part of the brain in a dementia which is implicated in ‘semantic knowledge’, e.g. knowledge for categories such as animals or plants, you might get a semantic dementia. This also arises from a part of the brain near the ear, but slightly lower and slightly more laterally.

So it would therefore be a major mistake to think a person you encounter, with memory problems, must definitely be living with dementia.

And on top of this memory problems can be caused by ageing. It would be wrong to pathologise normal ageing in this way.

Severe memory problems can be caused by depression, particularly in the elderly.

In summary, dementia is not just about losing your memory.

Dementia is not a natural part of ageing

Shibley Rahman 2 Comments

“Dementia Friends” is an initiative run by Public Health England, and delivered by the Alzheimer’s Society. 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.

When you see someone who is old, say above 65, they do not necessarily have dementia.

Dementia, caused by a disease of the brain, can affect any of the functions of the brain – such as movement, visual perception, memory or attention.

It’s felt that almost 40 percent of people over the age of 65 experience some form of memory loss.

When there is no underlying medical condition causing this memory loss, it is known as “age-associated memory impairment,” which is considered a part of the normal aging process.

But brain diseases like Alzheimer’s disease and other dementias are completely different.

Alzheimer’s disease is the most common cause of dementia worldwide.

The risk of getting dementia increases with age, but it is important to remember that the majority of older people do not get dementia. It is not a normal part of ageing.

Old age does not cause dementia but is a factor in developing the condition. The probability of an individual developing dementia increases with age, but not everyone will develop dementia in old age.

Dementia can happen to anybody, but it is more common after the age of 65 years.

Indeed, “young onset dementia” (YOD) plays out at a much younger age, anyway.

YOD, which most often plays itself out in the form of Alzheimer’s disease, is an abnormal neurological condition that is likely caused by a combination of factors.

YOD is increasingly recognised as an important clinical and social issue. This group of individuals have distinct needs for living well with dementia as far as possible.

Young onset dementia (by EL Sampson, JD Warren and MN Rossor) [Postgrad Med J 2004;80:125–139. doi: 10.1136/pgmj.2003.011171] cite a useful breakdown of the most common causes.

These causes are diseases, and produce a chronic, progressive course of dementia. The spectrum of diseases causes YOD bears some similarities and differences to that of diseases causing dementia in the older age group.

epidemiology

(from Sampson, Warren and Rossor, 2004)

Prevalence rates of young onset dementia have been estimated between 67 to 81 per 100 000 in the 45 to 65 year old age group.

A rare type of dementia, the variant Creutzfeldt-Jakob Disease (vCJD) was first reported in 1996; the youngest patient developed symptoms at 16 years of age (reviewed in Verity et al., 2000).

As described in the WHO factsheet 180, Variant Creutzfeldt-Jakob disease (vCJD) is a rare and fatal human neurodegenerative condition which is classified as a Transmissible Spongiform Encephalopathy (TSE), because of its ability to be transmitted and the characteristic spongy degeneration of the brain that it causes.

Its diagnosis does need to be in very specialist hands.

But, notwithstanding all that, is likely that the situation is likely to be very complicated.

The basal forebrain cholinergic complex including nucleus basalis of Meynert provides the mayor cholinergic projections to the cerebral cortex and hippocampus.

cholinergic neurones

Source here.

It’s thought that the hippocampus represents the story of facts or events (episodic memory), one of the bookcases in the “bookcase analogy” of the Dementia Friends initiative.

But it has latterly been acknowledged (Schliebs and Arendt, 2011) that he cholinergic neurones of this complex have been described to undergo moderate degenerative changes during aging, resulting in cholinergic hypo function that has been related to the progressing memory deficits with ageing.

References

Harvey RJ, Rossor MN, Skelton-Robinson M, et al. (1998) Young onset dementia: epidemiology, clinical symptoms, family burden, support and outcome, London: Dementia Research Group, 1998.

Ratnavalli E, Brayne C, Dawson K, et al. (2002) The prevalence of frontotemporal dementia. Neurology, 58:1615–21.

Schliebs R, Arendt T. (2011) The cholinergic system in aging and neuronal degeneration, Behav Brain Res, Aug 10;221(2):555-63. doi: 10.1016/j.bbr.2010.11.058. Epub 2010 Dec 9. Review.

Verity CM, Nicoll A, Will RG, Devereux G, Stellitano L. (2000) Variant Creutzfeldt-Jakob disease in UK children: a national surveillance study. Lancet. 2000 Oct 7;356(9237):1224-7.

WHO. (Revised February 2012) Variant Creutzfeldt-Jakob disease: factsheet no 180, available at http://www.who.int/mediacentre/factsheets/fs180/en/ [accessed 12 June 2014].

If you say ‘no decision about me without me’ too much, it’ll become meaningless

Shibley Rahman 5 Comments

It seems to have become a ‘bomb proof mantra’.

No self-respecting policy wonk on the healthcare circuit can be seen without the words ‘no decision about me without me’ stitched into the lapel of their jackets.

But if you repeat something enough times, people will believe you.

Conversely, it might become meaningless.

It of course is motherhood and apple pie, and not an ethos which you could fundamentally disagree with. Normally, that is.

This current parliament saw parliament introduce section 75 of the Health and Social Care Act (2012), and its associated regulations. It was a significant departure from previous statutory instruments enacted under previous governments.

This current Government wish to demonstrate in flashing lights their commitment to ‘localism’. This plainly became very hollow when Jeremy Hunt saw fit to contest the Lewisham case in both the High Court and Court of Appeal, against the loud wishes of stakeholders, at taxpayers’ expense.

The NHS in England is still reeling from this catastrophic policy decision, touted by a number of high profile think tanks and their corporate masters. It gave rocket boosters to competitive tendering to the private sector.

In any market, there are winners and losers. For every winner, there’s a loser. There’s a finite amount of cake we are being told. So in this climate it is no wonder that providers, including social enterprises, wish to seek an unique selling point in marketing.

The slogan “no decision about me without me” happily trips off the tongue for the purpose. There is very hard for any reasonable person to argue against the design of research programmes and the service without the views of the end-users.

But this all depends on your precise definition of ‘involvement’. For example, I have been successfully living with two chronic long term conditions, physical disability and mental recovery from a severe alcohol dependence. But in this climate of ‘co-production’ and ‘distributed leadership’, and even shared decision-making, nobody has had the decency to ask me for my opinions about these services.

One can adopt the stance that it is up to me to make my views know, rather than be merely a passive recipient of a service. And of course I do make my views known in non-symbolic ways.

The fact is that patients are all too often liable to made into cannon fodder for other people’s purposes. This might to be to sell a product or service in dementia.

Or they could be used to promote how wonderful ‘community services’ are in a London borough, for the personal gain of those promoting them, but at the expense of shifting resources away from severely under-resourced secondary care hospital units.

And not all stakeholders can be correct, and have an equal say in strategy. Reams and reams and reams have been written on this in the field of ‘corporate social responsibility’. For example, some social enterprises have found real difficulty in rationalising the drive to maximising shareholder dividend with community value and outcomes, however so defined.

Freeman had an attempt at formulating his ‘stakeholder theory’, but there have been remarkably few successfully theories since, arguably.

And how corporates show responsibility (or rather “don’t behave badly”) has become a hotbed for corporate strategists. For example, Prof Michael Porter, a strategy Chair at the Harvard Business School, published a highly influential review with Mark Kramer on society and strategy.

Large charities – operating strategically in a corporate-like manner – can, it can be argued under this construct, be obtaining their “moral fitness to practise” by involving people they raise large funds for in their mission, whether that is for ‘friendly communities’, ‘care’ or ‘research’.

So the pen is indeed mightier than the sword. Like pornography though, I can recognise real involvement and empowerment when I see it.

Some people aspiring, rather than battling or fighting, to live with dementia do wish to have ownership and control their dreams.

But in this crazy world of ‘dyadic relationships’, and other similar convoluted terms, some persons with dementia for example have their own beliefs, concerns and their expectations. They are not joined at the hip to the carers.

“No decision without me about me” is one of the latest political catchphrases in relation to the health service, in our jurisdiction, and describes a vision of healthcare where the patient is – if not an equal partner – then certainly an active participant in treatment decisions.

In 2002 the independent Wanless report recommended that, in order to cope with rising demand and costs, the NHS should move to ensure that all patients were “fully engaged” in managing their health status and healthcare.

It has a laudable aim, but, like many of these slogans, is at real danger of trivialising what is a profoundly serious policy issue.

Our ‘Dementia Friends’ session at BPP Law School on 1 December 2014

Shibley Rahman 0 Comments

Chris Roberts (@mason4233), Jayne Goodrick (@JayneGoodrick) and I (@legalaware / @dementia_2014) will be running a ‘Dementia Friends’ information session .

This ‘Dementia Friends’ information session will be at 4 pm at BPP Law School, Holborn, London WC1N 4NY.

‘Dementia Friends’ is a Public Health England and Cabinet Office initiative, delivered by the Alzheimer’s Society.

It is likely that this will be held in the lecture theatre [though this is awaiting confirmation, as we need to coordinate arrangements with the course schedulers of the Law School.]

It is completely free of charge to attend.

It is an information session, containing some activities, about five key facts about dementia. It is not training. We are not experts. We are not counsellors.

People living with dementia can often be frightened to tell their friends and/or family that they have received a possible diagnosis of dementia. This initiative is designed to impart some basic information about what dementia is.

We are not delivering this as ‘a tick box exercise’ – only attend if you are genuinely interested.

There will be a booking sheet published soon on our Twitter feeds. Places will be allocated on a ‘first come, first served basis’.

We should like to thank Anne (BPP University Room Allocation Service), Prof Carl Lygo and Prof Peter Crisp (Professors of Law, CEO of BPP and Dean of the BPP Law School respectively), and Shahban Aziz (CEO of BPP Students) for local help in BPP in organising this session for us.

Proposed plan

PLANFINAL

Poster

poster