Experts by personal experience aren’t always right (guest post)

Professor June Andrews discusses her discomfort about advocacy based upon the questionable (but unquestioned) personal experience of individuals.

Dementia is in the news.  Stories about it could be described as fashionable.  Advocacy organisations understand the power of hearing the voice of a person who is experiencing dementia themselves, and so they are on the hunt for people, preferably famous, who can come to represent the disease.  They can be people with dementia, or the relatives of people with dementia.  At a push, they can be people who sympathise with dementia, if they are famous enough to be influential even though they don’t have a back story.

Advocates have an honourable role in the campaign of any charity to raise funds.  It’s often described as raising awareness.  But in truth, awareness is already pretty high so you can be sure the main aim is to get funding for the charity, which is often focussed on a cure.

There are two problems with this sort of representative advocacy.

Problem 1 – the unquestionable legitimacy of “personal experience”.

The press officer at the charity is not a clinician, so when someone turns up with a diagnosis, they take it on face value. The way news is curated by media editors and controllers demands tropes like “victim” or “hero” and some virtue signalling or novelty.  If the person with the diagnosis is articulate and personable, they will be good to undertake media roles for the charity. The public gets most of their information from general media, so that’s the way to let them know they need to fund a particular charity and secure a cure.  Media coverage is so relentless and fast, the representative needs to be nimble and well prepared to get the best from any opportunity that arises.

Dementia is a progressive degenerative condition, but the press officer can’t stop to ask any questions when the person is still stable, at the same level, years later.  By that time the dementia representative patient is busy and in demand for appearances world-wide.  So pervasive is the idea of “nothing about me without me” that conference organisers know they will be heavily criticised if they fail to put a person with dementia up on the platform.   The media-experienced-dementia-experienced personalities get heavily worked.  They see it as a duty and a mission, whatever it costs them. 

I have recently been alerted to the fact that any question of whether they actually have what a clinician would think of as dementia is blocked.  Dementia clinical experts are puzzled, because mild dementia is a transitional phase but these mildly affected media representatives go on for years.  If someone has been on the circuit for a long time, clinicians can with confidence say that this person is definitely not like any other dementia case.  The charity can’t afford to go anywhere near this. However odd it might seem to people who really know about dementia, the representative (who almost certainly has some other complex illness) is put up in public as just “a person with dementia”. News values demand an interesting person with dementia who is happy to be exposed in the media.  If you have one, you keep them as long as possible and are, to be honest,  grateful if they seem to survive longer than usual because it’s hard work to keep finding people with a fatal, progressive, cognitive disease and a thirst for publicity.  You invest in what you’ve got.

Any suggestion that the patient’s sense of entitlement is out of control is taboo. When organising dementia events, you may sympathise with requests for free places for people with dementia.  When they then expected travel and hotel accommodation for themselves and their partners, with a few days on either side to overcome their fatigue, organisers can’t always afford it.   My own experience is that refusal causes profound offence, and can give rise to well publicised anger and unfavourable comparisons with other conference organisers. We’d get accused of profiteering on the backs of people with dementia and failing to give voice to people with dementia.  Actually our job was not to give them voice.  It was to educate professionals about the latest research, and practical things like how to manage continence, and terminal care.   The person with dementia talking at the event was usually preaching to the converted. We had more educative value from dramatic representations of the sort of complex problems that could never be revealed in the first person account of one individual.

Problem 2 – erosion of the legitimacy of professional expertise

The second problem is related. In the environment that has been developed with the strong encouragement of the advocacy organisations, any one of these “dementia-experienced” selected representatives trumps the knowledge or experience of the rest of the world.  The individual is sanctified with an almost religious fervour, in that anything they say cannot be contradicted. Crossing them gives rise to shock and outrage.  Those who might be seen to hold heretical positions such as questioning the diagnosis or wanting to meet without a token dementia person in the room often do so secretly because to speak openly about this sort of thing can affect your funding or your job prospects.  You risk a sort of excommunication. Or you hide.

 When you’ve upset the dementia lobby, they mobilise an articulate person with dementia who goes along with their mainstream view to attack you. From experience, it is personal and vicious.  If I was earlier in my career, I believe I’d be silenced by them.  The decider is that I don’t have dementia and they do, so anything I say that they disagree with is evidence that I have no knowledge. In this way, people who have worked with hundreds of affected families and people are marginalised. One individual can say on the basis of their personal experience, with the backing of an organisation, that this is only a “so-called” expert.  Social media heats up.  It’s dangerous to come out with an alternate point of view because you’ll get attacked.

I understand fear and rage, and as a psychiatric nurse, I’ve worked with lots of that.  What offends me is the channelling of that by organisations and lobbies for their own ends, using people with dementia, patients, dementia sufferers – whatever you are allowed to call them – as a human shield. They like to imagine they have the moral high ground, but they don’t.  For them, it’s just business and the sooner we reveal that, the sooner other sorts of experts will be able to say what they know without needless anxiety.