Policy makers should listen to this message from Richard Taylor, Dementia Alliance International

There is a motto in the National Health Service, used to varying degrees of success, which goes ‘No decision about me without me.”

We are currently in the middle of Dementia Awareness Week 2014 (18 May – 24 May 2014).

It is therefore timely that Richard Taylor has provided this comment, as a member of the increasingly important ‘Dementia Alliance International‘.

“What this world needs is more people living with the symptoms of dementia of this or that type standing up and speaking out. It also needs writers, politicians, Alzheimer’s Societies and Organization, researcher, fund raisers, caregivers, physicians, etc., etc. to first become better informed from the real dementia experts (persons living with the symptoms), and then to stand up and speak out for the rights, enabling support, and frontal assault on the stigmas of dementia and those who use them to perpetuate their own agenda.”


To read the ‘core beliefs’ of the Dementia Alliance International, please visit here.

A timely reminder from Prof Sube Banerjee, co-author of ‘Living well with dementia’ (2009)

Apart from one caption saying ‘suffer from dementia’, this video I thought was excellent.

Sube gives a very clear definition of dementia which I really liked.

I think the point that dementia is not a part of ageing, but associated with ageing, is extremely important. I think we’re likely to have increasing concern that dementia can be difficult to diagnose in certain communities. For example, in some Asian communities, there is not even a word for ‘dementia’.

Missing from Sube’s account is the fact we can do something for people living with dementia, which is why I actively promote ‘living well with dementia’.

‘Living well with dementia’ might seem at first glance like a bit of a crap slogan, and actually quite offensive for those people who have witnessed loved ones in severe forms of dementia. But it’s an attempt to convey the idea that every individual with dementia is entitled to respect and dignity, and there is much we can do to enable people to live well with dementia by a careful study of the person and his or her environment.

It is apart from anything else the name of the 2009 English strategy, which Sube co-wrote, and which is about to be renewed.

This video is of course particularly timely for ‘Dementia Awareness Week’ running from May 18-24 2014. Our Facebook page is here.

“Drop in centres”. Definitely “one to watch” in the new English dementia strategy.

Access to any sort of dementia service has become the focus of scrutiny in the English dementia strategy.

For example, NHS Bristol and Bristol City Council Health and Social Care have produced a strategy document entitled ‘Living well with dementia in Bristol’ to run 2011-2015. They helpfully provide the following table on page 32.


There is considerable interest in how much ‘support’ can be provided by the NHS and social care providers, and how much can be provided by charities and other voluntary entities.

A major faultline in policy is how the third sector can lower the barriers to entry for ‘other providers’ for dementia awareness, other than the usual suspects. There is a growing momentum that any awareness is to be welcomed, wherever it comes from, but ultimately this awareness should not be for knowledge for its own sake, but should be an application to encourage inclusivity.

And all services can be a bit rushed, especially any services, medical or legal, where the end point of funding is activity-based. But conversely what people with dementia and those closest to them, whether in an official caring rôle or otherwise, invariably mention is the need for time and patience.

“Drop-in centres” have attracted much interest of late.

They offer emotional support, companionship and practical advice to people, including individuals with dementia who wish to live well independently in the community.

They’re generally run by voluntary organisations, local councils and day centres. Drop-in centre sessions usually run for a few hours at a time, one or more times a week.

The volunteers at drop-in centres are generally there to listen and provide support to those who come along, as well as to encourage people to make friends and take part in activities that interest them. Activities are especially promoted in the NICE Quality Standard 30, a strategy document which has as its aim supporting people to live well with dementia. Activities can include things like games and quizzes, arts and crafts, exercise and relaxation classes. There might also be TV, computer and internet facilities. Some drop-in centres offer educational and life-skills workshops, on topics such as developing confidence.

Individuals who use drop-in centres often have opportunities to help make decisions about how the centre is run even, and decision-making, choice and control have become key planks of dementia whichever political party is in office.

The overall aim is to provide a friendly, relaxed and unthreatening atmosphere.

Drop-in centres support people with a very wide range of needs, including older people, young people, people with learning disabilities, deaf or blind people, refugees and asylum seekers, or People facing specific health conditions such as cancer

Many drop-in centres are also open to carers, which may include families and friends of people who have these kinds of support needs. Many people in some sort of ‘caring rôle’ do not consider themselves ‘carers’, numerous successive studies find.

Drinks and snacks are often available at drop-in centres and some also offer hot meals. Some centres can help arrange transport for people who find public transport difficult to use.

And ‘drop in’ approaches might be particularly positive for people living with dementia. Often people living with dementia find the diagnosis stigmatising, but invariably people living with dementia on receiving a diagnosis still wish to live life to the full.

There are lots of services available for people living in the community who would like companionship or support during the daytime. Day centres open for longer hours than drop-in centres and offer support to older people and adults with disabilities or mental health problems. There are lunch clubs for older people too. If you feel lonely or cut off from others in the community, or can’t leave your home very often, then you might like to benefit from “companion and befriender services” arranged through the drop-in mechanism.

‘Drop in centres’ have developed a momentum of their own in England. For example, Age UK Shropshire Telford & Wrekin have opened five Diamond Drop In Centres to support local people with dementia and memory difficulties, their families, carers and friends. Previously it was reported that carers in Faversham have access to a drop in centre in their own locality. This Kingsfield team had created the drop-in service to offer support and information for both their residents’ relatives and people in the local community who are caring for someone with dementia.

Norman McNamara, Founder of Purple Angels, announced this morning that there might be plans to launch a drop in centre in Exeter. Norman admitted to being ‘quite tearful’ at having organised a previous ‘Day Lewis – Purple Angel’ drop in centre, particularly of the busy nature of the location. But it is well known that Norman McNamara has achieved an enormous amount through a remarkable amount of personal determination, as he lives with a type of dementia called diffuse Lewy Body type. This all is a noteworthy development of a campaign which ‘thinks global acts local’. Their ‘global’ website is here.


Now it turns out that “Barchester” is in full support of the Purple Angel campaign. Norman had started this campaign in Torbay – an area with a solid reputation as a retirement destination. He began by generating awareness about dementia with local businesses and soon his iconic Purple Angel stickers started appearing in shop windows around the district to show solidarity and understanding of living with dementia

Norman 2

Many hope that ‘drop in centres’ will feature in the new English dementia strategy 2014-9.

If you’re an unpleasant person, a week of ‘dementia awareness’ will make no difference

There’ll be a third of people roughly who’ll hate whatever you do.

There’ll be a third of people roughly who’ll love whatever you do.

There’ll be a third of people roughly who’ll be completely indifferent.


This is advice my father gave to me shortly before he died. In society, there will always be a hardcore group of selfish bastards.

Many people who develop long term conditions in adulthood report how people whom they had considered ‘friends’ suddenly desert them.

They say ‘sayonara’ when times get tough. They are not there for you when it matters.

Sadly, in the real world, with all the best will in the world from policy-makers, there will very many people for whom this becomes an extremely negative experience on receiving a diagnosis of dementia from a clinician.

The shock of receiving that diagnosis can be profound, leading almost for the recipient of the diagnosis to enter the first stage of the Kubler-Ross ‘five stages of grief': denial.

And of course doctors can come to the wrong conclusions especially if the information is slightly incorrect: so in an ideal world, every first diagnosis would be confirmed through a specialist look at the supporting evidence including perhaps further tests.

There has never been a definitive statement that there has been a concomitant increase in resources for services for specialist dementia services for this national policy in increasing dementia diagnostic rates. This is one issue which the All Party Parliamentary Group for dementia under The Baroness Greengross should examine urgently, I feel.

Unfortunately, if ‘friends’ of yours suddenly leave you in droves, you will end up lonely, even if you yourself are a pleasant person.

“I have never felt so lonely” is a very common saying to hear a person living well with dementia saying, even in this age of ‘Dementia Friends’.

So, there’s the rub, schemes such as ‘Dementia Friends’ will make certain people collect a badge for making themselves feel better about having done something superficially for dementia, and think ‘job done’.

But it’s the action which follows which matters. This might include contributing to a dementia charity, with a very small proportion of revenue ultimately going towards research into living well with dementia.

The original Japanese ‘befriending’ scheme meant exactly that. The aim was to ‘befriend’ a person living with dementia, to break down the usual taboos.

So it is not altogether surprising that, if society still shows stigma and discrimination towards people living with dementia, there are some people who might recognise symptoms but prefer to keep schtum.

Keeping schtum might be delaying to see the Doctor, or delaying doing something about the diagnosis, such as having it confirmed elsewhere or telling close friends about it.

In the cost-benefit analysis, telling people about the diagnosis might be accompanied about fears of losing your driving licence (as indeed a person from South London living with vascular dementia told me three days ago at the Alzheimer’s Show). Or it could be accompanied by fears about job prospects. Or it could be accompanied by fears shopping or using a bank.

Whilst I disagree with the name, you can sympathise with the general good intentions of  ‘dementia friendly communities’. And perhaps award ceremonies which celebrate good practice, if they break down discrimination and stigma, might help.

Seeing people living well with dementia might help turn around negative perceptions of certain people. This might include Norman McNamara’s infectious ‘Run for the Sun’, the winner in the 2014 Riviera Fringe Festival Anthem Competition. Or it could include Sir Terry Pratchett continuing to produce successful books whilst living with a diagnosis of a type of dementia called posterior cortical atrophy.

But one is immediately cautious about embarking on a route where people living with dementia need to prove they are successful to prove their worth. This is reminiscent of some people from ethnic minorities who had to prove themselves academically and professionally to be accepted. At one extreme, for example, should be welcoming immigrants into this country only if they can contribute something economically to this country? Nigel Farage has often spoken about the engineer from New Zealand being discriminated against compared to perhaps an artisan from a country such as Latvia.

But it is clearly going to be difficult to change direction of a huge ocean liner. One week’s ‘Dementia Awareness’ is necessary but insufficient, possibly. People’s basic knowledge about dementia could be improved with some basic facts – e.g. that it is not part of normal ageing, many people live well with dementia, dementia is not just about memory – as per the ‘Dementia Friends’ campaign from Public Health England delivered by the Alzheimer’s Society.

However, people with dementia often report that they need to be given time and for others to be patient from both professionals and non-professionals. People with dementia often report being rushed in settings ranging from supermarket aisles to acute hospitals. Such a sentiment of feeling rushed more often than not gets tagged onto a feeling of being a burden, and can become profoundly depressing.

When professional shills for raising money into dementia get accompanied by ‘cost’ rather than ‘value’, and when public perception of some in society about people living with dementia can be low, the situation can get worse rather than better.

When we use terms such as ‘dementia friendly communities’, it can engender a feeling of ‘them against us’, and people with dementia become ‘somebody else’s problem’.

Of course, many people are not so pathetic, and such negative generalisations may not be justified with recent successes in raising awareness such as G8dementia or ‘Dementia Friends’.

But we do need to worry as a society if things have not fundamentally changed as a society in perception and identity of people living with dementia. Some people still refuse steadfastly to believe there are some people living well with dementia. It could be the case that people actively avoid talking about the ‘D’ word in much the same way they once avoided the ‘C’ word, and this is reflected in the comparative lack of funds raised for dementia and cancer respectively.

‘Dementia Awareness Week’ is running here from 18-24 May 2012.

If one more person can become a bit more understanding about living with dementia, there are plenty of reasons to be cheerful?

Please support us on Facebook this week.

Deep breaths..

Deep breath…

‘Invisible dementia’ friends?

One of the most difficult issues in mental health is how it is very hard to do ‘outreach’ for people with certain conditions.

You can’t, as such, force people with alcohol dependence syndrome in remission or relapsing to go to support groups such as Alcoholics Anonymous.

A real issue for national policy is how there are individuals who do not wish to have a diagnosis of dementia.

Some feel that they do not memory symptoms severe enough actually to warrant a diagnostic label of dementia. And – to be fair – they could be living with a ‘mild cognitive impairment’ instead.

In an ideal world, you’d want specialist services to be able to work out whether a person is likely to be developing a dementia. This might include the appropriate thinking tests (called ‘cognitive neuropsychology’), a brain scan (such as CT or MRI), or even other investigations (such as fluid off the spinal cord, or blood tests).

Such individuals do a ‘cost benefit analysis': of thinking how much they achieve by telling their friends that they might be developing a dementia, and receiving support or medical treatment, compared to being alienated and being offered no support or treatment.

The fact is that the drugs used primarily to treat dementia do not slow progression, and can help with symptoms for earlier forms of the condition for a few months on average.

So, public health policy faces a situation where some people with dementia prefer to have their diagnostic label ‘invisible’ to others. And this is why this new public health advertisement is so intriguing.

The ad can be criticised in that it gives a very stereotyped picture of a person with dementia: old, pictured against a background of sinister music.

This ad is clearly aimed at increasing the diagnostic rates, which is ultimately one of the key factors by which The Baroness Greengross and the rest of the All Party Parliamentary Group will assess the impact of “The Prime Minister’s Dementia Challenge”.

Oddly enough, the ad says, “He’d started to forget things. It could not just have been old age”. This is one of the five messages of ‘Dementia Friends’, a Public Health initiative delivered by the Alzheimer’s Society.

However, the ad screws up in the sense that dementia does not only present with memory symptoms: in fact people with early stages of semantic dementia, primary progressive non fluent aphasia, behavioural variant frontotemporal dementia, and posterior cortical atrophy can present with plum normal memory.

This leads naturally onto another related faultline in national policy.

One of the common questions apparently asked in Dementia Friends sessions is “How can you tell a person definitely has dementia by looking at them?”

The actual answer is that you can’t.

And there are clearly ethical limitations to asking people to ‘out themselves’ in saying they are living with dementia, and as such mental health policy mostly does not engage in outreach.

So if you’re building ‘dementia friendly communities’, for the aim of embracing equality (which you have to do anyway under the law), are you somewhat ignoring diversity?

Thanks for this picture shared by Kate Swaffer.





[The picture in the top left corner is from the “Invisible Friends” project, which is something totally different.]

Could ‘social prescribing’ be an effective way of promoting living well with dementia?

Personhood and the environment interact in a complex way for a person living well with dementia.

However, it is generally not feasible to address these issues in a busy GP practice, whatever the best will in the world; nor even in hospital or specialist tertiary unit care.

The G8 Dementia Summit and the World Dementia Council (which has no persons with dementia or carer representatives) were and are outstanding at promoting the interests of the big pharmaceutical industry companies and elected politicians.

The evidence for the beneficial effects of drugs used commonly to treat specifically dementia on quality of life measures can at best be described as scanty.

The opportunity cost of 493 pages of the Health and Social Care Act (2012), and an ensuing £3bn top down reorganisation, and £2.5 mn spent on ‘Dementia Friends’ from Public Health England (delivered by the Alzheimer’s Society), is that many issues were simply kicked into the long grass.

When I turned up at the “Alzheimer’s Show” this weekend, opinions from families which had somehow encountered persons receiving a clinical diagnosis of dementia were at fever pitch.

It was not uncommon for me to hear of ‘non existent’ post diagnostic support. Many individuals were simply desperate for somebody to take on the rôle of ‘care coordinator’, exasperated at spending hours on trying to navigate through the benefits and legal systems inter alia, even parking aside health and social care.

We simply cannot go on like this.

I found a situation where many social enterprises reported having been rogered backwards through the Prime Minister’s Dementia Challenge. While people invariably recounted how wonderful it would be for society to be more welcoming and understanding of people living with dementia, they found current initiatives rather superficial and patronising.

What they really wanted was real practical help on the ground.

Caregivers of all types, including paid carers on zero hour contracts and unpaid family members, reported to me being totally exasperated about soldiering on regardless. Many reported to me how they did not feel that they had taken on a caring rôle even. Some reported their unease about whether their care and support were any good.

Social prescribing could however be the ‘next big thing’.

It is a means of enabling primary care services to refer patients with social, emotional or practical needs to a range of local, non-clinical services, often provided by the voluntary and community sector.

Research into social prescribing reports tend to report benefits in three key areas: improving mental health outcomes, improving community wellbeing, and reducing social exclusion which is relevant for older people with depression or who are socially isolated, both increasing problems in society.

As one example, “information prescriptions” might be particularly beneficial to individuals living with a long-term condition or social care need such as dementia, in consultation with a health or social care professional.

Information prescriptions, it is hoped, will guide people to relevant and reliable sources of information to allow them to feel more in choice and control and better able to  manage their condition and maintain their independence.

Broadly, social prescribing is one route to providing psychosocial and/or practical support for:

  •  vulnerable and at risk groups, for example low-income single mothers, recently bereaved elderly people, people with chronic physical illness, and newly arrived communities;
  •  people with mild to moderate depression and anxiety;
  •  people with long-term and enduring mental health problems; and
  •  frequent attenders in primary care.

There have been various permutations of it trialed around the county, but the basic design is like this.

social prescribing

One particular “Social Prescribing Pilot Project” has already demonstrated a successful model of partnership working between the voluntary sector and general practitioners and can be replicated.

This pilot project worked with 12 GP practices and six local Age UKs across Yorkshire and Humber.

General practitioners referred 55 older people who had mild to moderate depression or were lonely and socially isolated to the Social Prescribing service at their local Age UK.

As part of the authorisation process, clinical Commissioning Groups (CCGs) are required to demonstrate that they have mechanisms in place to work with voluntary-sector groups.

63 referrals to Age UK services including befriending services, day clubs, information and Advice, benefit checks, trips, Theatre outings, advocacy, legal advice, and art groups.

Funded Voluntary and Community Sector providers have benefited from the opportunity to broaden and diversify their provision for people with complex needs. It has enabled a number of smaller community level providers to engage with health commissioning for the first time, whilst enabling more established providers to test the effectiveness of new and innovative types of provision.

Social prescribing could be in the future developed as a route to strengthening protective factors for mental wellbeing.


For people living well with dementia, such a system would make it very easy for GPs to refer people to services to promote living well. Instead, GPs have needed to reach for their prescription pad to prescribe drugs which may have a modest effect on symptoms for a few months, but which have no effect on slowing progression.

Of course, it is in a sense sad that doctors have to accept parity of such interventions to promote living well with dementia by the symbolic prescription pad, but such formality may assist in commissioning and catalysing change towards the mindset of whole person care.

Whole person care, or integrated care in the alternative, is likely to be introduced by the incoming government of whatever political flavour after May 7th 2015. Andy Burnham MP, Shadow Secretary of State for Health, has already indicated that he will making the existing structures ‘do different things’ to avoid another massive structural reorganisation. However, in this new Jerusalem, it is likely that Health and Wellbeing Boards will take on a new importance.

People are still uncertain how whole person care would be implemented, but the money is probably on unified personal budgets being option. The concern for many is that the money would quickly run out in such budgets, and hybridising two systems (one universal and one means-tested) would undermine the founding principles of the NHS.

Notwithstanding, the current political intention from Burnham and Labour is for social care to become subsumed under the NHS.

Interventions which genuinely improve somebody’s quality of life for living well with dementia, such as reminiscence (including ‘Sporting memories‘), healthy living clubs, advocacy, life story, may find themselves empowered in the middle of 2015 in a way that they were never under the “Prime Minister’s Dementia Challenge” of the current administration.

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.”


“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.


“The Alzheimer’s Show” tomorrow and Saturday: my competition

I’m going to the Alzheimer’s Show tomorrow and on Saturday (Friday 15th May and Saturday 16th May 2014) in London Olympia. I am looking forward to seeing and chatting with many of my friends there.

I quite like the approach of the show as it is accessible to people with dementia as well as people who help to support people living with dementia.

The show’s official flier can be downloaded off their official website.

There’ll be over exhibitors including care at home, care homes, living aids, funding, legal advice, respite care, complementary therapies, training, telecare, assistive technology, charity, research, education, finance and entertainment.

You’ll get a chance to be a “Dementia Friend“.

I have written about the five key messages of “Dementia Friends”, as my PhD was successfully awarded in the cognitive neuropsychology of dementia at the University of Cambridge.

My slot – “Meet the author”

I’m thrilled to be doing a half an hour slot called ‘Meet the author': details here.

My book is called “Living well with dementia”. It also happens to be the name of the current five-year English dementia policy, about to be renewed.


(@mrdarrengormley and I)

It has had many positive reviews, including from Prof John Hodges, a leading international expert in all dementias, including frontotemporal dementia.

I was especially honoured to receive this book review from the prestigious ‘Nursing Times‘.

I feel very strongly that living well with dementia must be a critical plank in the renewed English dementia policy, whichever party/parties come to power on May 8th 2015.

As I explained in my short article in the “ETHOS” journal, living well with dementia is perfectly understandable in the context of integrated care or whole person care.

There’s no doubt that values-based commissioning, promoting wellbeing in dementia, should be a core feature of English health policy in the near future. I discuss one application here in the Health Services Journal recently.

My competition

To be eligible you will need to be at the Alzheimer’s Show on one of the two days to pick up your prize.


Simply respond to the following –


 You must tweet this by the day on which you intend to be at the Alzheimer’s Show.

English dementia policy: hitting the target but completely missing the point?

It was an accusation, at times quite intense in the media, that political pressures drove English health policy too ferociously. Managers were accused for become obsessed with  targets: causing Sir David Nicholson, the previous CEO of NHS England, to coin the phrase, “Hitting the target and missing the point“.


An example of this is how NHS Trusts met their financial key performance indicators in part obligation to becoming NHS Foundation Trusts with their regulator. And of them had devestating safety records. And their CEOs were no longer to be found, as they had long gone.

With errors in policy, often the enablers disappear long before the repercussions can be seen.

The current Government is relentlessly pursuing a policy of improving diagnostic rates in dementia. This is heavily promoted by the Alzheimer’s Society, a major campaigning organisation to which it appears much implementation of Government dementia policy has been effectively outsourced (another example being “Dementia Friends“). One ‘target’ here is one million ‘Dementia Friends’ “by 2015″; whether or not this is formally called a target,  it is thought the current number of “Dementia Friends” is currently a long way off this. As this presently stands, this might in fact be a case of completely missing the target (but the point itself is potentially commendable.)

Prof Alistair Burns, clinical lead for dementia in England, said in March 2014: “Our aspiration is to increase the diagnosis rate and close the gap. It’s a very important point about the variability of services. One of the things that we do at NHS England, working with colleagues in social care, is to raise the profile. There’s also been specific interest in young people with dementia and that’s very important too.”

In November 2013,  further, it was reported that  the Health Secretary’s “dementia map” of England shows that in some areas, fewer than four in every 10 people living with dementia have their condition recognised by the NHS.

These included public attitudes (including fear and stigma), and GP attitudes (where GPs were ‘blamed’ for preventing or delaying early diagnosis). In fact, it is conceded by leading academics that the reasons are far more complex than that.

Despite improvements in awareness of dementia, there is still confusion amongst many about what the symptoms of dementia are. There is also still fear attached to dementia.

The current Government took to the strategy of “naming and shaming” the areas with the lowest dementia diagnosis rates.


In the report ‘Unlocking diagnosis: The key to improving the lives of people with dementia’ from the All Party Parliamentary Group on dementia‘ in July 2012, possible reasons for the perceived low diagnosis rates for dementia were discussed.

Nonetheless, the Alzheimer’s Society “Early Diagnosis” campaign was launched to increase diagnosis rates by improving public awareness of dementia through the Worried about your memory? campaign, and by increasing health professional understanding of dementia. And “Dementia Friends” also came along.

However, Dr Martin Brunet, a leading General Practitioner in dementia, warned in the Journal of Dementia Care in 2013 that that the higher the diagnosis rate too the higher the likely rate of overdiagnosis.

Brunet concluded that there is likely to be an optimal rate of diagnosis where the balance of benefits and harms is most beneficial. But Brunet also suggested that meaning that calls to achieve a target diagnosis rate are meaningless and potentially harmful at the present time.

He later remarked that the setting of target rates for the diagnosis of any condition is unprecedented, implying consistently that other powerful non-clinical forces were at play in driving up the clinical diagnosis rate.

The diagnosis of dementia can only be made at post mortem. Consistently work, including that from the laboratory of Prof Seth Love, has shown that there exists a substantial minority of individuals who were thought to have dementia while alive – but they never had dementia post mortem.

One in three older people has some form of minor cognitive impairment, which can be picked up in tests but may never lead to full-blown dementia.

And last year, it got even worse.

A paper in 2013 was published in BMJ Open entitled, “Improving the identification of people with dementia in primary care: evaluation of the impact of primary care dementia coding guidance on identified prevalence”.

The authors reported that improving dementia care is a policy priority nationally and internationally; there is a ‘diagnosis gap’ with less than half of the cases of dementia ever diagnosed.

They noted that the English Health Department’s Quality and Outcomes Framework (QOF) encourages primary care recognition and recording of dementia. The codes for dementia are complex with the possibility of underidentification through miscoding.

So they developed “guidance “on coding of dementia.

Their findings,according to the authors who include Prof Sube Banerjee, an Alzheimer’s Society ambassador, argue for “the  potential of a simple primary care coding exercise, requiring no specific training, to increase the dementia identification rate.”

The authors confidently report,

“An improvement of 8.8% between 2011 and 2012 is equivalent to that of the fourth most improved primary care trust in the UK. In absolute terms, if this effects were mirrored across the UK primary care, the number of cases with dementia identified would rise by over 70 000 from 364 329 to 434 488 raising the recognition rate from 46% to 54.8%. Implementing this exercise appears to be a simple and effective way to improve recognition rates in primary care.”

But remember Prof Burns’ precise wording of this? He refused to call these anticipated improved diagnostic figures for dementia “target”. he calls them “aspirations”. They are not “targets”. In the same way, Prof Banerjee’s paper does not suggest “Gaming”.

A sharp rise in the number of people needing palliative care was reported earlier this year.

The way hospitals record deaths could be covering up poor treatment and costing lives, it was alleged.

Figures show a dramatic rise in the number of people recorded as needing palliative care at the end of their lives, with some hospitals saying more than 35% of their patients die that way.

Experts feared hospitals could actually be hiding the fact patients were admitted for treatment which then failed.

Data from health analysts shows thatacross England in 2012/13, 36,425 deaths were coded as palliative – meaning people received some sort of care to relieve suffering at the end of their lives.

That was 17.3% of the total number of deaths and is almost double the 9.1% (2,1130) recorded as needing palliative care in 2008. In 2006, just 3.3% of deaths were palliative.

Some hospital trusts have greatly outstripped this national rise.

Palliative care deaths are not included in the hospital standardised mortality ratio (HSMR), which compares the expected rate of death in a hospital with the actual rate of death.

Professor Sir Brian Jarman, from Imperial College London and “Dr Foster”, developed the HSMR. He told famously the inquiry into the scandal at Mid Staffordshire that some trusts increased their coding of palliative care deaths to reduce overall death rates.

“I am concerned that trusts know that increasing their palliative care rates assists their HSMR and am concerned that this could be the reason they are doing it.”

But the good news is that these are not “targets”. And they are not being “gamed”. I am increasingly beginning to think that in England we do not have a credible dementia policy any more anyway.

The five key messages of ‘Dementia Friends’

Ideally, at the end of a ‘Dementia Friends’ session, each participant will have learned the five key things that everyone should know about dementia, and aspired to turn an understanding into a commitment to action.

In this blogpost, I wish just to discuss a little bit these messages in a way that is interesting. If you’re interested in finding out more about ‘Dementia Friends’, please go to their website. Whatever, I hope you become interested about the dementias, even if you are not already.

I’ve got nothing to do with writing ‘Dementia Friends’, but the following I reckon is a view which would be given by anyone like me who has worked in this academic field for a very long time.

I am a physician. I did my PhD in early diagnosis of frontotemporal dementia in Cambridge. I am a Dementia Friends Champion in London.


1. Dementia is not a natural part of aging.

This is an extremely important message.

However, it is known that the greatest known risk factor for dementias overall is increasing age. The majority of people with Alzheimer’s disease, typically manifest as problems in new learning and short term memory are indeed 65 and older.

But Alzheimer’s disease is not just a disease of old age. Up to 5 percent of people with the disease have early onset Alzheimer’s (also known as younger-onset), which often appears when someone is in their 40s or 50s.


[For a further discussion of this statement, please see another blogpost of mine.]


2. It is caused by diseases of the brain.

Prof John Hodges, who did the Foreword to my book, has written the current chapter on dementia in the Oxford Textbook of Medicine. He also supervised my Ph.D. The chapter is here.

There is a huge number of causes of dementia.


The ‘qualifier’ on this statement is that the diseases affect the brain somehow to produce the problems in thinking. But dementia can occur in the context of conditions which affect the rest of the body too, such as syphilis or systematic lupus erythematosus (“SLE”).


[For a further discussion of this statement, please see another blogpost of mine.]


3. It’s not just about memory loss.

This statement is perhaps ambiguous.

“Not just” might be taken to imply that memory loss should be a part of the presenting symptoms of the dementia.

On the other hand, it might be taken to mean “the presentation can have nothing to do with memory loss”, which is an accurate statement given the current state of play.

John (Hodges) comments:

“The definition of dementia has evolved from one of progressive global intellectual deterioration to a syndrome consisting of progressive impairment in memory and at least one other cognitive deficit (aphasia, apraxia, agnosia, or disturbance in executive function) in the absence of another explanatory central nervous system disorder, depression, or delirium (according to the Diagnostic and Statistical Manual of Mental Disorders , 4th edition (DSM-IV)). Even this recent syndrome concept is becoming inadequate, as researchers and clinicians become more aware of the specific early cognitive profile associated with different dementia syndromes.”

I remember, as part of my own Ph.D. at the University of Cambridge on the behavioural variant of frontotemporal dementia,virtually all the persons with that specific dementia syndrome, in my study later published in the prestigious journal Brain, had plum-normal memory. In the most up to date global criteria for this syndrome, which should be in the hands of experts, memory is not even part of the six discriminating features of this syndrome as reported.

Exactly the same arguments hold for dementia syndromes which might be picked up through a subtle but robust problem with visual perception (e.g. posterior cortical atrophy) or in language (e.g. semantic dementia or progressive (non-) fluent aphasia, logopenic aphasia.) <- note that this is in the absence of a profound amnestic syndrome (substantial memory problems) as us cognitive neuropsychologists would put it.


[For a further discussion of this statement, please see another blogpost of mine.]


4. It’s possible to live well with dementia.

I of course passionately believe this, or I wouldn’t have written a book on it. It is, apart from all else potentially, the name of the current English dementia strategy.


[For a further discussion of this statement, please see another blogpost of mine.]


 5. There is more to the person than the dementia.

This is an extremely important message. I sometimes feel that medics get totally lost in their own clinical diagnoses, backed up by a history, examination and relevant investigations; and they become focused on treating the diagnosis rather than the person with medications. But once you’ve met one person living with dementia, you’ve done exactly that. You’ve met only one person living with dementia. And it is impossible  to generalise for what a person with Alzheimer’s disease at a certain age performs like. We need to get round to a more ‘whole person’ concept of the person, in not just recognising physical and mental health but social care and support needs, but realising that a person’s past will influence his present and future; and how he or she interacts with the environment will massively influence that.


[For a further discussion of this statement, please see another blogpost of mine.]