Tag Archives: memory

Dementia is not just about losing your memory

“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.

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Meet Norman and Terry: two people living with a dementia in different ways

“Dementia is not just about sitting in a bathroom all day, staring at the walls.”

So speaks Norman McNamara in his recent BBC Devon interview this week.

Norman McNamara

This may seem like a silly thing to say, but the perception of some of “people living  with dementia” can be engulfed with huge assumptions and immense negativity.

The concept of ‘living well with dementia’ has therefore threatened some people’s framing of a person who happens to have one of the hundred or so diagnoses with dementia.

It’s possible memory might not be massively involved for someone who has been diagnosed with a dementia.

Or as “Dementia Friends” put it, “Dementia is not just about memory loss.”

Norman McNamara and Sir Terry Pratchett are people who are testament to this.

“If you made a mistake, would you laugh it off to yourself and say ‘Ha, ha, maybe it’s because I have dementia.””

If somebody else made a mistake, would you laugh at that person and say ‘Ha, ha, maybe it’s because you have dementia.” Definitely not.

There are about a hundred different underlying causes of dementia.

“Dementia” is as helpful a word as “cancer”, embracing a number of different conditions tending to affect different people of different ages, with some similarities in each condition which part of the brain tend to be affected.

These parts of the brain, tending to be affected, means it can be predicted what a person with a medical type of dementia might experience at some stage.

This can be helpful in that the emergence of such symptoms don’t come as much of a shock to the people living with them.

Elaine, his wife, noticed Norman was doing “weird and wonderful things”.

Norman says “my spatial awareness was awful”, and “I was stumbling and falling”.

Norman, furthermore, was putting “red hot tea in the fridge”, and “shower gel, instead of toothpaste, in [my] mouth”.

Dementia with Lewy bodies (DLB) is a type of dementia that shares symptoms with both Alzheimer’s disease and Parkinson’s disease. It may account for around 10 per cent of all cases of dementia. It is not a rare condition.

It is thought to affect an estimated 1.3 million individuals and their families in the United States.

Problems in recognising 3-D objects, “agnosia”, can happen.

Lewy bodies, named after the doctor who first identified them, are tiny deposits of protein in nerve cells.

See for example this report in this literature.

“Night terrors” have long been recognised in diffuse lewy Body disease.

“The hallucinations are terrific”

The core features tend to be fluctuating levels of ability to think successfully, with pronounced variations in attention and alertness and recurrent complex visual hallucinations, typically well formed and detailed.  

See for example this account.

For Norman, it was ‘prevalent in his family’.

Other than age, there are few risk factors (medical, lifestyle or environmental) which are known to increase a person’s chances of developing DLB.

Most people who develop DLB have no clear family history of the disease. A few families do seem to have genetic mutations which are linked to inherited Lewy body disease, but these mutations are very rare.

Monogenetic forms of Lewy body disorders, where a patient inherited the disease from one parent, are rare and comprise about 10% of cases. These familial variants are more common in persons with an earlier age of disease onset.

The patterns of blood flow can help to confirm an underlying diagnosis (see this helpful review).

Also, in this particular ‘type of dementia’, it can be helpful for medical physicians to avoid certain medications (which people with this condition can do very badly with). So therefore while personhood is important here an understanding of medicine is also helpful in avoiding doing harm to a person living with dementia.

However, Norman has been tirelessly campaigning: he, for example, describes how hundreds of businesses in the Torbay-area of Devon have signed up for ‘dementia awareness.”

And, as Norman says, “When you’ve met one person with dementia, you’ve met one person with dementia.”

Sir Terry Pratchett is another person living with dementia.

Sir Terry Pratchett described on Tuesday 13th May 2014 the following phenomenon bhe had noticed:

“That nagging voice in their head willing them to understand the difference between a 5p piece and £1 and yet their brain refusing to help them. Or they might lose patience with friends or family, struggling to follow conversations.”

coins

“Astereognosis” is a feature of ‘posterior cortical atrophy’ (“PCA”).

A good review on the condition of PCA is here.

Sir Terry Pratchett has written a personal reflection on society’s response to dementia and his own experience of Alzheimer’s to launch a new blog for Alzheimer’s Research UK: http://www.dementiablog.org

Sir Terry became a patron of Alzheimer’s Research UK in 2008, shortly after announcing his diagnosis with posterior cortical atrophy, a rare variant of Alzheimer’s disease affecting vision.

He went on to make a personal donation of $1 million to the charity, and has subsequently campaigned for greater research funding, including delivering a major petition to No.10 and countless media appearances.

Terry Pratchett Dementia Friends campaign

In his inaugural post for the blog, Sir Terry Pratchett writes: “There isn’t one kind of dementia. There aren’t a dozen kinds. There are hundreds of thousands. Each person who lives with one of these diseases will be affected in uniquely destructive ways. I, for one, am the only person suffering from Terry Pratchett’s posterior cortical atrophy which, for some unknown reason, still leaves me able to write – with the help of my computer and friend – bestselling novels.”

Posterior cortical atrophy (PCA) refers to gradual and progressive degeneration of the outer layer of the brain (the cortex) in the part of the brain located in the back of the head (posterior).

The symptoms of PCA can vary from one person to the next and can change as the condition progresses. The most common symptoms are consistent with damage to the posterior cortex of the brain, an area responsible for processing visual information.

Consistent with this neurological damage are slowly developing difficulties with visual tasks such as reading a line of text, judging distances, and distinguishing between moving objects and stationary objects.

Other issues might be an inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects.

Some persons experience difficulty performing mathematical calculations or spelling, and many people with PCA experience anxiety, possibly because they know something is wrong. In the early stages of PCA, most people do not have markedly reduced memory, but memory can be affected in later stages.

Astereognosis (or tactile agnosia if only one hand is affected) is the inability to identify an object by active touch of the hands without other sensory input.

An individual with astereognosis is unable to identify objects by handling them, despite intact sensation. With the absence of vision (i.e. eyes closed), an individual with astereognosis is unable to identify what is placed in their hand. As opposed to agnosia, when the object is observed visually, one should be able to successfully identify the object.

Living well with dementia means different things to different people.

Pratchett further writes:

“For me, living with posterior cortical atrophy began when I noticed the precision of my touch-typing getting progressively worse and my spelling starting to slip. For an author, what could be worse? And so I sought help, and will always be the loud and proud type to speak my mind and admit I’m having trouble. But there are many people with dementia too worried about failing with simple tasks in public to even step out of the house. I believe this is because simple displays of kindness often elude the best of us in these manic modern days of ours.”

As we better understand what dementia is, our response as a society can be more sophisticated. I’ve found one of the most potent factors for encouraging stigma and discrimination is in fact total ignorance.

Both Norman and Terry demonstrate wonderfully: it’s not what a person cannot do, it’s what they CAN DO, that counts.

This is ‘degree level’ “Dementia Friends” stuff, but I hope you found it interesting.

 

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

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

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

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

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

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

Apprehensive

Brighton are very lucky to have him.

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

Opening slide

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

SUBE2 GENERAL

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

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

1979 was of course a big year.

SUBE1 1979

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

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

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

1979 DEMENTIA

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

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

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

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

SUBE3 COSTS

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

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

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

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

SUBE7 Japan friendships

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

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

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

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

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

SUBE9 ADI

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

SUBE12 Alz Soc campaign

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

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

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

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

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

SUBE4 National dementia strategy

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

SUBE8 Dementia national strategy objectives

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

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

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

SUBE11 Barriers to care

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

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

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

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

Alistair Burns Shibley Rahman email

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

book photo

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

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

Being an antisocial bastard, I didn’t mingle.

Mingle

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

SUBE 13 Badges

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

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

This apparently is a ‘Delphinium’.

Delphinium

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

Upset to be leaving

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

The Shard

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

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

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

Book cover

And what does the future hold?

Over to Prof Banerjee…

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