The Purple Angels’ Dementia Awareness Day, founded by Norman McNamara, on September 20th 2014!

I’m looking forward to the Purple Angels’ Dementia Awareness Day to be held on September 20th 2014.

This year’s chosen charity is “YoungDementia UK“, and here is the link to the “Just giving” page which has been set up.

Dementia is considered ‘young onset’ when it affects people under 65 years of age. It is also referred to as ‘early onset’ or ‘working age’ dementia.

However this is a somewhat arbitary age distinction which is becoming less relevant as increasingly services are realigned to focus on the person and the impact of the condition, not the age.

Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember.

Their personality, behaviour and mood can also be affected. Everyone’s experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.

Dementias that affect younger people can be rare and difficult to recognise.

People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.

They are of considerable interest to me, as my own Doctor of Philosophy was passed by the University of Cambridge in January 2001, on “Specific cognitive deficits in the frontal lobe dementias”.



Norman McNamara from Devon was diagnosed with dementia six years ago when he was just 50.

Although his father and grandmother had suffered from the condition, Mr McNamara did not expect it to be part of his future.

He said: It was never really in the back of my mind that I might get it.

“I think it came to a head when I set the kitchen on fire three times.”

After his diagnosis, McNamara, from Torquay, began blogging online about his experiences and during a phone call with a friend he had the idea of organising the first Dementia Awareness Day.

The event was marked all across the world for the first time on 17 September 2011.

Norman McNamara writes, regarding this year,

“We want this year to be the best ever, and you don’t have to wait until the 20th Sept 2014 to do some fundraising! It doesn’t matter if it’s today, tomorrow, the 20th Sept or even New Year’s Eve!’

“All that matters is that you hold a small event, be it a coffee morning, a football card, car boot, a bingo game, a concert or even a SKY DIVE!”

“It really doesn’t matter, just please be assured that every penny you raise and donate to this link will go straight to YoungDementia UK and be spent on those who need it most, those with Dementia!”

“So please, let me know what you are organising this year so we can advertise it, the more people know about it the more we will raise.”

“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.

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:

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.


Do you think the media tries actively to hide people living very well with early dementia?

Do you think the media tries actively to hide people living very well with early dementia?

Don’t shoot the messenger, but this is effectively a question which Norman McNamara, well known campaigner and a person living with dementia, asked on a public forum as follows.


But when you think about it, you rarely get ‘success’ stories about or written by people living well with an early dementia.

This phenomenon, to be fair, might be part of a wider picture, of the media tending to focus on bad news stories, or “shocks”.

Not to generalise, but often irresponsible journalists have tended to sensationalise news stories anyway, “not letting facts get in the way of a good story”.

It is thought that there are currently about 900,000 people currently living with dementia in the UK. Some of them are living well by the law of averages?

But the question asked poses wider issues of more potential concern. Does the public need to be ‘scared’ in order to donate to a cause?

Might it be effective to use the words “bomb”, “timebomb” and “flood” to shock people into action through donation to a dementia charity?

The focus of efforts can of course be the elusive “cure”, with proponents arguing that cures for dementia have been denied resource monies compared to, for example, the cancer charities.

It can also be argued that there is a genuine shock in the story, that it would be quite inappropriate to sanitise the dementia narrative. For example, almost every week there’s a new revelation about cuts in social care.

As it happens, I had been thinking about a similar issue: on the nature of the term “dementia friendly communities”.

A friend of mine, whose mother lives with dementia, said to me: “Whenever I see that a café is ‘dementia friendly’, I get immediately reassured.”

On the other hand, another close friend of mine, living with dementia, said: “I find the concept of dementia friendly communities intensely patronising.”

When I asked her why, she said it is simply inappropriate to think of people with dementia as one huge group as they have differing needs and abilities.

Maybe the term ‘community’ is meant to reflect this diversity though?

I am physically disabled, and I have often thought about whether I would welcome a national policy called “disabled friendly communities”.

In a way, giving a whole group of people a label negates personhood and individual identity. On the other hand, criticism of the term might be overly politically correct, and one should be intuitively positive about any initiative which is inclusive for people in society?

The late Tony Benn used to explain his views on equality in terms of not forcing people to be equal. Benn argued that a more useful way to conceptualise the situation was to think of removing obstacles that made people more unequal.

But I feel the question that Norman poses is an appropriate one. If we are to embrace truly the notion of a ‘dementia friendly communities’, we need to embrace the idea too that some people with dementia are inspirational and can be leaders themselves.

The notion of presenting people living well with dementia is therefore a very important one, and to omit them from the narrative would be a very dangerous pursuit.

That is, it would be if such a pursuit were deliberate: presumption of innocence, and all that.

The BBC’s current political editor, Nick Robinson, calls this ‘bias by omission’, and, whilst we share rather different political perspectives perhaps, on this I feel Norman and Nick are together right.

Sale proceeds from Norman McNamara’s books will go to ‘Young Dementia UK’

Young Dementia UK is a very interesting charity.

The original name of the charity, “The Clive Project”, was a tribute to Clive and Helen. Our name change to YoungDementia UK is aimed at strengthening that tribute well into the future.

Clive was in his mid-40s when his career as an Army officer suddenly nose-dived. He had difficulty communicating with his colleagues. He was made redundant in 1992; he was 45 and his children were 3 and 4. He never worked again.

After a fraught year of failed job applications and difficulties in coping at home, Clive was forced to look for a reason for his difficulties. Clive was diagnosed with early onset dementia in December 1993.

There’s another great initiative worth noting, involving this ‘Give as you live’ website.

This website enable people to donate to a charity of their choice, just by doing their normal shopping online. You sign up to their website, then just do your shopping as you normally would (but via their website), and then they donate a percentage of the shop to the charity of your choice.

Major retailers have signed up for it – John Lewis, Tesco, Amazon etc.

So many people do their food shopping online, or buy presents and household items online. Imagine if a small donation was made to YDUK (“Young Dementia UK”) every time how much money could be raised? And as I say, it doesn’t cost the person shoppping a penny or take up any of their time!

And in another great move – sale proceeds from Norman’s books (twitter here) will go to this years nominated charity of 2014 which is Young Dementia UK.

You can view the books here on Amazon UK.



Silent Voices “My Battle With Alzheimer`s Rages On [Paperback]

Me And MY Alzheimers: Me and My Alzheimers, join me as fight the fight of my life against this awful illness: 1 [Paperback]

More Than Words, Poems by An Alzheimer`s Sufferer [Kindle Edition]

More than words, poems by an Alzheimers sufferer: My everyday fight with Alzheimers: 1 [Paperback]

The Ghost Of Marnie Jones: 1 [Paperback]

Silent Voices “My Battle With Alzheimers Rages on” [Kindle Edition]

Me And My Alzheimers [Kindle Edition]

My statement in response to Norman Macnamara’s status this morning

For those of you who haven’t seen it, this is Norman’s statement from this morning on Facebook.

“Good morning all,

Yesterday was a hard day for many reasons, but i stood my ground!!And On more than one occasion !!!!. I was questioned about the GPS Systems, the ethics of it and how many people we will reach and are reaching now. Questions were raised about how some people thought the Purple Angel campaign was just a one man band and will fizzle out after my demise (Their words not mine!!) and the locality of the reach we have!!

This hurt as i felt it was undermining all the great work you have done around the world, something they are having trouble grasping!! Being as protective of you all as i am, i let them know, in no uncertain terms how STRONG we are, how BIG we are and how our Arms all reach around the globe in complete unison and that i will not, or will ever, have people talking (Gossiping) about something they quite clearly no nothing about!!!

Days like this will come, i know this, and i can deal with it without favour or fortune ( i fight a bigger battle of my own as you well know) but please know i will always defend the work we do , you do, and everybody does in this wonderful organisation. For all who like a bit of a read this is what i wrote in my feed back to all attendees yesterday when i arrived home last night, much love to all and always remember
“Together We Are Strong”


Good evening all, just a little feedback from todays meeting. As a person “Living with Dementia” can i just say a huge thank you to each and every one of you for your attendance today under such difficult circumstances regarding the weather.

Now, onto my feedback, after the “Lively” discussion Ian Sheriff and myself had regarding the locality of what we do under the banner of the Purple Angel Campaign i would just like to clear a couple of things up. As much as Ian pressed what we do is a local thing just in Torbay, nothing could be further from the truth.

The Purple Angel Campaign is a Global movement with over 100 Dementia Ambassadoors worldwide. We have huge swathes of the UK covered and reading the material we provide for free, the links at the bottom of this e mail me show just this. The Urban MYTH that all this will collapse when i become worse is just that, and URBAN MYTH. We have Succession protocols in place and not only that the 100 ambassadors i talk about the majority also have their own teams to take this forward when i am long gone. I will say passionately, that whilst others have been discussing this, talking about oty for months and the ethics of it, doing research will last months and months, we have just got on with it and got the job done, and in the process of carry on doing so.

As for the GPS `s being a local thing, this is also UNTRUE!! The call centre in Torbay is now a NATIONAL CALL Centre for the whole of the uk. The GPS`s are being posted to those who request them from the 1st of Feb 2014 and are being activated ALL over the UK as we speak. They will begin to save lives The call centre employees are all ex Dr`s, Nurses, Firemen and paramedics who are all versed in Triage and emergency situations !! All protocols have been passed by the NHS and devised by Devon and Cornwall police. How other forces respond will have to be worked out at their own local level but these are now “LIVE and “Active ” across the UK

Without having what we call a sideways dig at anybody, the Alzheimers society are not the Dementia police and are not the only ones who can make a difference to people with dementia and their carers!! And certainly not everything has to be okayed by them. I was so happy to have the support there today of my fellow Purple Angel dementia ambassador Hilary Cragg who is also a solicitor and i was only to happy to hear that she also is mystified by the “Ethics ” argument regarding GPS SYstems. Nobody is forcing these on anybody, and if anybody gets to the late stage where they aren’t responsible to say yes or no then there is usually a Power of attorney involved or a need for care, it really is as simple as that and its the media and the general public who are making hard work of it as usual!!

That said we dont have to PROVE to anybody what we are doing, and whatever the outcome will just carry on doing what we do best. The invitation to ALL of you is here to ask any questions you want too and our offer of help still stands to all who need it. I hope the weekend is a lot kinder to you than it was to us all today.

Best wishes, Norrms and family”

I would like to make a brief statement on this status.

I have met Norman and Elaine:



The idea that Norman is a ‘one man band’ is science fiction.

My personal Facebook is populated full of ‘Purple Angels’ who genuinely adore Norman.

Norman is in fact what management gurus would call a ‘charismatic leader’. This means that he has a vision; he has followers; he’s communicating his vision; and followers believe in his vision.

I think it’s very difficult to find a more relevant stakeholder opinion that that of the person living with dementia.

I think, in fact, and many agree with me, as an academic who has devoted a lifetime to dementia, that they should be at the heart of all service provision decisions about strategy.

I also think they should shape the direction and tactics of our global research strategy.

If anyone would like to discuss with me rationally the ethics and law of wandering mitigation, I am happy to do so. I am a member of the World Neuroethics Society, and have been awarded my Master of Law from the University of Law here in London.

Using words such as ‘demise’ can only be hurtful. As somebody who had a cardiac arrest in 2007, I should like to remind people that anything can happen to anyone at any time.

My aspiration to make life better for those living with dementia has been obstructed by much promotion and spin from those people who have pursuing their own agenda often with a cruel aggression. I salute Norman and his Purple Angels for standing his ground.

All I can say to Norman is that at first they ignore you, then they try to discredit you, and then they attack you.

Norman’s reaction yesterday confirms for me only one thing.

That Norman and Elaine, and the Purple Angels, have in fact won the “battle”. And thanks to them we have made huge advances in promoting living well with dementia.

Ostrich GPS trackers for persons living with dementia who are at risk of wandering

Ostrich Care have decided to offer “tracking devices”, supported by 24/7 365 geo tracking and contact to a live emergency call response centre.

The idea is that, for people with dementia who know they’re at risk of suddenly wandering, the trackers can be used to work out where that person has gone.

Norman McNamara describes the project in the short film above.

Norman describes the usual concerns about their use in his video, including whether it’s a proportionate response to wandering using the notion of human rights.

There’s no doubt that wandering can be a distressing and dangerous situation for certain individuals with dementia (and their closest.)

Practical issues which will be of concern to users of this device will inevitably include the idea of being tracked at all, whether the user will remember to take the tracker with him or her outside, or whether the battery life is sufficiently long such that the device doesn’t conk out.

Anyway, the idea is that this approach is voluntary, and will bring benefit to those who want or feel they need them.

Some information about the “Ostrich GPS tracker” is here.

This blogpost is not sponsored by Ostrich Care.