A quick word about my campaign ‘Dementia Rights’


I intend to launch a campaign called ‘Dementia Rights’.

But I should like to say a few words.

I do not wish to give the impression that I am campaigning on behalf of people with dementia on this. This would be to overrule every instinct I have on this. I have always believed that people after a diagnosis of dementia need to be leading on campaigns themselves. What I have found a bit annoying is some people using people with dementia to further their own script. Like an authentic newsreader.

For this reason, I have decided to time the launch of this at an appropriate time in relation to the Dementia Alliance International (DAI). I think the primacy of their work is paramount. With Dementia Awareness Week in the UK coming up, I’d like to ensure that the spotlight is shining on the right targets. I will be supporting ‘Dementia Friends’ as a Dementia Friends champion as usual.

I part company from the ‘Dementia Friends’ initiative a bit in that I feel the campaign caters well people for people who do not have dementia, and unwittingly produces a ‘them against us’ situation. I find the word ‘friends’ a bit patronising, but I know no malice is intended. It reminds me of ‘Does he take sugar?’ – that’s all.

This morning I was asked to discuss about the use of the hashtag ‘#DementiaRights’ not from anyone I work with usually. The criticism is that human rights are universal and therefore should not be constrained for people with dementia. This is of course correct, and it is an argument I have made myself indeed. But on the other hand I do think for too long, as a person outside of the community of people living with dementia, that the rights of people with dementia have been somewhat ignored – take for example the primacy of the ‘dementia friendly’ (rather than ‘dementia inclusive’) approaches, or the inability to segregate carers’ rights from the rights of people living with dementia. I should like to emphasise that carers’ rights are extremely important too for distinct reasons.

I will not be flogging ‘Dementia rights’ to any commissioners. I will make the materials freely available for anyone to use. Money will not be involved in any way. I am very irritated as you know with dementia being exploited for commercial gain.

The material of ‘Dementia Rights’ will not be confined to any particular geographical jurisdiction.

The format of ‘Dementia Rights’ will be, like Dementia Friends, a public awareness session given by anyone. It will have five key themes, and will be built around various activities and an original analogy of mine to explain human rights.

The aim of this initiative is to bomb policy with rights-based advocacy, and to get people talking about dementia rights. I don’t have the infrastructure of Big Charity, or the resources, but never deny the good which can be done from small acorns, to corrupt a Margaret Mead quotation often used by DAI themselves.

My abstract submission for #ADI2016 on dementia, disability and rights

The deadline for abstracts submission is November 16th 2015.


Here’s my sole submission for the 31st ADI conference to be held in Budapest.



The awareness of fundamental international legal human rights underpinning rights-based advocacy for dementia.


Dr Shibley Rahman




An assumption invariably made is that the general public, including people living with dementia and carers, have a good understanding of the fundamental human rights which underpin policy.


To make use of the rights in rights based advocacy, you need to know what these rights are, as they are enforceable. The Mental Health Foundation published in 2015 their much awaited and influential report ‘Dementia, rights and the social model of disability’.


Most significantly, the European Convention for Human Rights (ECHR) and the UN Convention for Rights for People with Disabilities (UNCRPD) apply in Europe and the world respectively.


Dementia is a disability under international law.




There are relatively few studies of the level of awareness of international rights.


This study aimed to remedy that.




A ‘Survey Monkey’ survey took place in the first week of November 2015. Invitations to participate were tweeted regularly. There was no restriction geographically on participation.




The electronic questionnaire contained 11 questions.


A maximum of 54, and minimum of 51, responses were elicited for any one question.


19% stated that they were disabled.

The vast majority (83%) perceived dementia to be a disability (answering 4 or 5 on a scale of 0 (not at all) to 5 (very much)).

A substantial proportion of respondents did not know whether right to a personal budget (47%) or a right to a medical diagnosis (39%) were rights under ECHR.

A high proportion (81%) recognised the right to privacy and family life as a human right under ECHR.

Of four instruments surveyed (human rights act, mental capacity act, UNCRPD and equality act), the respondents felt that all four instruments had approximately equal ‘importance’.

A sizeable proportion did not know the availability of the two separate rights to accessibility or to justice under the UNCRPD (54%, 54%).

48% did not know that a right to live independently and in the community exists under the UKCRPD.

47% did not know that a right to work and employment exists under the UNCRPD.

Of the five PANEL principles (participation, accountability, non-discrimination and equality, empowerment and legality of rights), non-discrimination and equality was viewed as the most important (34%); and accountability the least (4%).




The significance, conceding limitations, of these results for international policy will be discussed fully.



The ‘faces of dementia’

I am not actively antagonistic towards the medical ‘profession’, but I think I should be allowed to offer some healthy criticism of their activities as regards dementia. Their activities can tend to belittle people into a portfolio of clinical meetings and investigation results, charting decline in people with dementia, and not offering anything much in the way of life planning, care or support. The lack of drive for clinical nursing specialists, say compared to Marie Carie and Macmillan, is a testament to a profound impotence in clinical leadership in some places.


And yet UK dementia research is flourishing, a true envy of the world, while junior doctors sadly are thinking about strike action. The two cultures are fascinating, but, on the international scene, there are some remarkable people with dementia doing remarkable things. I do somewhat resent how little I was ‘taught’ about living with dementia at medical school, but I think ultimately I was to blame. The NHS ‘teaches’ you to treat clinical care in hospitals as processes which need to be ‘productive’ and ‘efficient’. I would encourage any junior in training to read up about living with dementia from any possible diverse source. For example, reading this piece on living with posterior cortical atrophy by Valerie Blumenthal will teach you much more about humanity and the condition, than many decades at medical school might.




My friend Helga Rohra was elected to the position of Vice Chair of Dementia Alliance International. Helga was already Chair of the European Working Group of Persons with Dementia, a group which has had success in mapping the concerns of people with dementia and carers onto European policy. Helga’s book is currently being translated from the German to English (we hope); and Helga’s career as a translator who spoke five languages is not to be dismissed lightly.


Every day, Agnes Houston MBE is active in campaigning about dementia. A proud member of the Scottish Dementia Working Group, Agnes’ own particular interests are sensory issues in dementia.




I have met some extraordinary people in the last two years, since my interest in dementia became less from the perspective of my medical training and more to one of essential humanity.


The late Tony Benn used to joke about how the term ‘activist’ tended to be used pejoratively as an insult. For example, a vicar might be a ‘religious activist’, or an author might be a ‘literary activist’. I still hesitate when I hear the term ‘dementia activist’, as I feel that it puts an unnecessarily militant overtone on extraordinary people doing extraordinary things.


Take for example Peter Mittler, himself an Emeritus Professor for the University of Manchester. Peter has in fact got an incredibly distinguished career behind him in inclusivity. Hilary Doxford was the first ever delegate living with dementia onto the World Dementia Council, a post which Hilary has executed brilliantly.




I will be in Birmingham NEC for the evening of Friday, to be there with my friend Chris Roberts, who has been nominated for the award of most exceptional person living with dementia in the National Dementia Care Awards 2015.




Also nominated is Ken Howard, who like Chris Roberts, came to our joint get-together hosted by me and Kate Swaffer in Arlington Centre, Camden. Ken, good luck!




I don’t like the term ‘stages of dementia’ for the very reasons which our friend Beth Britton describes here. Indeed, I remember Helga specifically railing against this in her plenary speech at the Alzheimer’s Disease International conference this year in Perth, Western Australia, in April 2015.


Last night (Aussie time), this morning (London), was Kate Swaffer, another extraordinary person doing another extraordinary thing. Kate is Chair of Dementia Alliance International, and was nominated for Australian of the Year (for Southern Australia). Jacinta’s also in this photo!




Kate Swaffer maintains a profound interest and expertise in cuisine; Kate even ran a restaurant. There’s very little Kate hasn’t excelled at previously, including poetry and nursing. Kate even achieved a distinction in her Masters in Dementia Care from the University of Wollongong recently.


Putting the ‘me’ back in dementia is no small desire; seeing the person beyond the dementia is essential, and I can’t emphasise this enough. I was thinking this morning of what I’d say for the new Nottingham initiative ‘Dementia Day to Day’, and I struck on the idea that what links us all, whether we happen to be living with dementia, carers (including friends and family), people in research, professionals (allied or otherwise), all practitioners including social care practitioners, and so on, is a strong sense of ‘bonding’ and community. I reckon I can spot quite easily people who aren’t ‘team players’. Unfortunately, there’s a minority who are so focused on the bottom line or the next target that such individuals have lost the plot of what living beyond dementia is all about. I think when you as an individual worry too much about your empire or the next grant to commission, more than the actual needs of people with dementia, met and unmet, or worry about your own standing in your industry, you should really begin to worry.


The diverse faces of dementia deserve much better.

“Stop using stigma to raise money for us”, says a leading advocate living well with dementia

Let me introduce you to Dr Richard Taylor, a member of the Dementia Alliance International living well with dementia, in case you’ve never heard of Richard.

“We shouldn’t be put on ice”, remarks Taylor.

“Or when we shouldn’t be put in a freezer, when we our caregivers go on holiday. We too should take a vacation from our caregivers.. enjoy the company of other people with dementia and enjoy their company.”

Dr Taylor had explained how there is a feeling of camaraderie when people living with dementia meet in the room. This is somewhat different from an approach of people without dementia being ‘friendly’ to people with dementia, assuming of course that you can identify reliably who the people with dementia are.

We are now more than half way though ‘Dementia Awareness Week’, from May 18 – 24 2014. Stigma, why society treats people with dementia as somehow ‘inferior’ and not worth mixing with, was a core part of Dr Taylor’s speech recently at the Alzheimer’s Disease International conference held this year in Puerto Rico.

He has ‘been going around for the last ten years, … talking to people living with dementia, and listening to them.”

That’s a common ‘complaint’ of people living with dementia: other people hear them, but they don’t listen.

“Stigma defines who we are.. not confined to the misinformed media, or the ‘dementia bigots’. Stigma is within all of us. When I heard my diagnosis, I cried for weeks… I’d never heard of dementia or Alzheimer’s disease, but it was the stigma inside me.”

Commenting a new vogue in dementia care, which indeed I have written about in my first book on living well with dementia, Taylor remarks: “We’ve now shifted to ‘person-centred care’. I think that’s a good idea. I always ask the caregiver who that person was centred was on previously. But I do that because I know I can a bit of a smart-arse”

“The stigma is in the very minds of people who treat us.”

“But you actually believe we are fading away… and we are not all there… it is not to our benefit.”

“The use of stigmas to raise awareness must stop right now.”

” Very little attention is paid to humanity of people living with dementia.. The use of stigma to raise awareness and political support must stop. We must stop commercials with old people.. which end with an appeal for funds. That reinforces the stigma. That comes out of focus groups with a bunch of people they want to focus on.”

“What would make you give money to our organisation? An older person or a younger person… We had a contest in the United States of who should represent “dementia”. The lady who won was 87-year old man staring into the abyss with a caregiver with a hand on her shoulder…”

wrinkly hands

“Telling everybody with dementia that they’re going to die is a half-truth. The other half without dementia are going to die too. Making it sounds as if people are going to die tomorrow scares the life out of people… scares the money out of people.”

But it seems even the facts about dying appear to have got mixed up in this jurisdiction. Take for example one representation of the Alzheimer’s Society successful Dementia Awareness Week ‘1 in 3 campaign’.

This was a tweet.

1 in 3

But the rub is 1 in 3 over 65 don’t develop dementia.

Approximately 1 in 20 over 65 have dementia.

It’s thought that by the age of 80 about one in six are affected, and one in three people in the UK will have dementia by the time they die.

There was a bit of a flurry of interest in this last year.

Neither “Dementia Friends” nor “Dementia Awareness Week” can be accused, by any stretch of the imagination, of ‘capitalising on people’s fears”.

And the discomfort by some felt by speaking with some sectors of the population is a theme worthy of debate by the main charities.

Take this for example contemporaneous campaign by Scope.


But back to Richard Taylor.

“How are you going to spend the rest of your lives? Worrying about how you’re going to die, or dying how you’re going to live?”

“I believe there is an ulterior motive.. to appeal to our fear of dying.”

“Stop using the fear of us dying to motivate people to donate to your organisations. It makes us mad and complicates our lives more than it needs to be.”

“The corruption of words to describe people who live with dementia and who live with us must stop.”

Dr Richard Taylor argues that the charities which have worked out how best to use manipulative language are the dementia charities.

“The very people who should be stopping corruption in language are the very ones involved in… “We’re going to cure dementia” What does that mean? Or will it be a vaccine where none of you get it and we all die, and so there’s no dementia any more?”

Taylor then argues you will not find ‘psychosocial research’, on how to improve the life of people with dementia.

Consistent with Taylor’s claim, this recent report on a ‘new strategy for dementia research’ does not mention even any research into living well with dementia.

“We are heading for more cures.. we’ve set the date for it wthout defining it. If we’re going to cure it by 2025, what will I see in 2018 to know we’re on track? .. It’s corrupt language.. None of the politicians will be around.. But people with dementia will be around to be disappointed.”

Taylor notes that every article rounds off with: “And now with further investigation, there’s a hope this might do this and this might do that.”

Except the politicians and charities have learnt how to play the system. These days, in the mission of raising awareness’, a Public Health and Alzheimer’s Society project, many articles focus on ‘Dementia Friends’, and people can decide at some later date whether they want to support the Alzheimer’s Society.

Articles such as this, or this, or this, or this, or this, or this, or this, or this, or this, or this, or this, or this, for example.

They could as a long shot decide to support Alzheimer’s BRACE, or Dementia UK. Dementia UK have been trying desperately hard to raise awareness of their specialist nursing scheme, called “Admiral Nurses“.

It all begs the question is the focus of the current Government to promote dementia, or to promote the Alzheimer’s Society?

Take this tweeting missive from Jeremy Hunt, the current Secretary of State for Health in the UK:


According to Taylor, “We need to start helping for the present.”

He is certainly not alone in his views. Here’s Janet Pitts, Co-Chair of the Dementia Alliance International, who has been diagnosed with frontotemporal dementia. Janet is also keen on ‘person centred services’, ‘is very proud of the work [we] have been doing since [our] inception in June 2013′, and is an advocate.

“I am an example of where life is taken away, but where life is given back… [I want us to] live well with dementia, advocate for people with dementia, reduce stigma in dementia.”

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.