What do we want? Meaningful dementia activism. When do we want it? Now.



With dementia care on its knees in England, it is impossible to avoid the conclusion that this is in part due to a failed model of ‘dementia activism’ with annually the same dementia activists appearing on the same stage in the same conference talking about the same things.

I do not have any objection to learning from other people’s experiences. The commodification or presentation of ‘lived experience’ as a brand is something, however, to be concerned about. The pattern is the same, only disrupted by COVID-19. A group of people who say they have dementia. As a professional, I am certainly not going to diagnose them at a distance. I am not going to coerce any of them into ‘outing’ their actual diagnoses, because the medical profession takes medical confidentiality extremely seriously, except for example where disclosure is necessary with others at danger potentially. But I could say I have early dementia, and I could say I am an ambassador. This is simply a fact of the problem of the system at large.

Being able is not an invisible impairment. I could say I have an invisible disability, and you could give me travel expenses to talk about it. For example, my perceptual problem could be rare, only known to me. This could happen legitimately in posterior cortical atrophy. Or, I have an insidious change in behaviour and personality. This could happen in behavioural variant frontotemporal dementia. Except one problem here, some ‘activists’ have been heavily promoting the mantra that behavioural symptoms can’t be symptoms of dementia, which flies in the face of the clearly difficult symptoms such as agitation, anxiety and compulsions which can occur as dementia progresses or indeed in delirium superimposed on dementia.  To remind you, the inability of family carers to cope with these symptoms is a huge reason why individuals with dementia can end up in a care home.  The conflation of ‘invisible disability’ with activism with disabilities you can’t ‘see’ is very shrewd in fact. But it is a glaring observation that in this small group of people they never talk about their invisible impairments.

Also, in this narrative, carers, although appendages at conferences at events, do not explain how or when they care in their public skits at conferences. So this educational experience is lost. Caring in families is 24/7 and very real. I know. I am one. We don’t hear of any of the frontlines of caring in dementia, such as social care or NHS continuing care. It’s no accident that the NHS England ‘Living well with dementia’ transformation pathway contains diagnosing well, living well, supporting well, dying well, but no caring well. What sort of nonsense is this?


This is a product of years of ‘activism’ in England by these comedians.

As I said, I do not have any fundamental objection to experiences. I value experiences. All experiences are valid. They add hugely to the biomedical/social/psychological descriptions in textbooks and lectures. But they are being branded – processed – marketed – and transacted upon. This is totally the wrong approach. There are some proponents of dementia activists who are little more than brand ambassadors for charities or social enterprises, who do not seem to have an authentic interest in the savagery of the injustices of dementia care in England, but rather seem more keen on improving their profile through book sales or Twitter followers. This is wrong. Some of these people do need neuropsychiatric help, because they have been clearly misdiagnosed, having been given a diagnosis a decade ago, with no obvious progression, even allowing for the ‘invisible disability’ get out of goal card. But these are people who one assumes would never have wanted a diagnosis of dementia. Most people in fact don’t want to have a diagnosis of dementia. They don’t see the loss of speech, problems eating or swallowing, delusions or hallucinations, or aggressive behaviour as an ‘opportunity’.

A gadgy catchphrase has been the ‘voice of the person with dementia’. Yes, sure. But why are some voices so inaudible? The voices of those residents with advanced dementia in nursing homes receiving clinical specialist nursing care. There are some people who have literally lost their voice through dementia (for example primary progressive aphasia or logopenic aphasia), and how are they meant to be represented on a fair and equal basis in podcasts or conferences? Some topics are simply out of bounds. I’ve never heard a dementia activist talk about his or her incontinence, psychotic symptoms or swallowing difficulties (assuming these symptoms exist.)

I get trolled about this. I get emails at 8 am saying I am the mouthpiece for the medical profession, I’m doing myself ‘no favours’ and I should know better. From ‘dementia activists’. But there are clearly some bitter people around who should read about the common law and statutory law on malicious communications. I think this whole industry, of a ‘go to’ group, spinning publicly disinformation like a game show, is highly discreditable, and needs scrutiny.

I believe strongly in the presumption of innocence from having done my Master of Law. This gives me a right to discuss human rights in a commentary in Dementia Journal, as I intend to. ‘Lived experience’ has become bastardised in all the wrong directions, with ‘go to’ groups in corporate dementia charities opening up the membership to mild cognitive impairment or MCI too (to allow for people misdiagnosed with dementia who don’t have dementia). We know that MCI includes a functional neurological deficit population (see excellent paper in Brain this year). The whole macabre evolution of ‘lived experience’ gone wrong is discussed competently in this excellent BBC ‘Moral Maze’ here. To re-iterate, I believe strongly in learning from experiences.

The whole thing is sick, sick, sick. These individuals and those processes are diverting valuable scarce resources which we desperately need elsewhere in raising the profile of dementia care in England.

When do we want this scrutiny?






Rights-based approaches in dementia. What are they good for?

I will be responding to a Mental Health Foundation report on disability and dementia on Thursday.

“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about. I was, to be honest, a bit afraid whether it was “the next big thing” in dementia policy, like “dementia friendly communities”. My concern was that it is a bandwagon, which, like the “no decision about me without me”, is prone to becoming a slogan without people looking behind the sentiment. But on closer examination, I feel “rights based approaches”, which I will call “RBA” so it sounds less threatening, has much to offer.

For a start, it has a lot to offer people living with dementia themselves – this includes all individuals who’ve received a diagnosis of dementia, and living at all ‘stages’ of their dementia. I feel the danger with “dementia friendly communities”, apart from the basic problems of how you define ‘friendly’ for a start (is it the same as capable? inclusive? accessible?) is that it offers more to people other than people with dementia than the people with dementia themselves. However, this policy was clearly meant to be for the benefit of the person living with dementia, such as more ‘friendly’ design, transport or housing.

But human rights, such as right to be free from degrading treatment, apply to everyone. They are inalienable; they apply to everyone. There are problems in thinking that all human rights are legal ones. It’s often cited that the offense caused by Apartheid is a moral one and pre-existed legislation. The general issue is that rights do not need to be in law to be meaningful (but it certainly helps.) The fact that they are inalienable is an extremely powerful concept – that they do not erode as the dementia progresses. The way dementia is often framed in the media and even by professionals is an insidious “dehumanising” process.

And the United Nations are deadly serious about the implementation of human rights, to the extent it has produced a Convention on the Rights of People with Disabilities. It’s also given guidance on how corporates should behave responsibly to observe human rights. The Convention on the Rights of People with Disabilities, I feel, is valuable as it adds serious teeth to what might have seemed peripheral issues, such as the democratic representation of people with disabilities.

Its ethos about everyone being equal in front of the law has serious implications for our own Mental Capacity Act. And I don’t think it is a bad thing that we are forced to think about our understanding of capacity – and what ‘happens’ when capacity is ‘lost’ in a seemingly all or nothing matter. A law is only as useful as its enforceability, but a sense of ‘rights conciousness’ gives people with dementia a sense of entitlement to standards. Of course, it is counterproductive if people use this law to be compliant to prevent complaints, rather than use this law to acknowledge certain people have legitimate legal expectations.

I feel, particularly, that a RBA offers a mechanism to campaign as a social movement. People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’. People with dementia can campaign for minimum standards in things which affect their health through constructs such as the Convention for People with Disabilities, such as in housing, education or democracy; in the same away as activism on public health brought about basic changes in sanitation in global medicine.

This should be of course a focus for public health anyway, but it is all too easy for Big Charity and governments to collude in a narrative on prevention and cure, squeezing out living well. But this prevention script is not innocuous either. A healthy lifestyle does not necessarily mean another dependency on cholesterol or blood pressure lowering drugs.

And the “pre-dementia” notion, often advocated for by Big Charity, potentially can make patients out of us all. The effect is we are all living in fear, some more than others, and ‘it’s our fault’ if we don’t do something to stop getting dementia (the “personal responsibility” narrative). A disability requires a long-lasting substantial impairment, and access to benefits on the basis of disability are de-incentivised by any simultaneous wish to ‘live well’. We get into slippery territory if we can recognise all people with ‘genetic handicaps’ over meticulous examination of their DNA through ‘Big Data’ innovations. Some people find the label ‘disability’ empowering, some disempowering, looking at the literature from all long term conditions. I personally find recognition of my physical disability ’empowering’, but each to their own?

And living better with dementia is important as it supports a move away from deficits and illness. Health is not just about an absence of illness, and people on receiving a diagnosis of dementia are entitled to lead lives in recovery akin to receipt of a diagnosis of schizophrenia. If a social movement such as ‘dementia activism’ gains traction, it’s perfectly possible this will provide further leverage, such as not seeing people with later stages of dementia being parked in residential homes. For decades, it was too easy for many individuals to be given inappropriate antipsychotic medications institutionalised like some sort of police state.

I think language is critical – and that’s why this from the Alzheimer’s Society back in 2009 did not impress me much.


Victimhood is sometimes unwittingly exacerbated by Big Charity – which is why we all need to be vigilant. A RBA may help to reset the compass on this one.

In summary, I feel RBA are complementary to dementia friendly communities, and will make the weather. I think they are less reliant on codification by governments or governmental bodies, and can be ‘enforced’ in a legalistic manner, but the crucial strength in them is their ability to command a social movement for better dementia care and respect for people with dementia and carers.