Day: April 21, 2015

Blame Alice: how language wilfully produces power imbalances in dementia

Shibley Rahman 0 Comments

People who’ve received a diagnosis become entwined in power games, often from clinicians, often conferring blame on them.

As public health and discussion of non-communicable diseases produces more detailed effective messaging of risk factors for Alzheimer’s disease and other dementias, we have to be careful. That is, people find themselves ‘to blame’ for developing dementias, for not having eaten the right foods, drunk too much wine, and so on.

The language actually used to describe people living with dementia is not uncommonly completely unacceptable from some (NOT ALL) clinicians and researchers: e.g. “wetter”, “poor feeder”, “screamer”, “vocaliser”, “obstructive”. Alzheimer’s Australia have produced useful language guidelines specifically on this subject.

I know of one situation in a jurisdiction which went as follows.

“The continent” “vocaliser” “screamer” was in a room in residential care. The nurse did not attend to the buzzer. The resident was waiting for the toilet. By the time the nurse came to the “screamer”, the “vocaliser” had become “the incontinent”. As a result of repeated incidents like this, the nursing home received more State subsidy on account of the higher number of “the incontinents”.

Al Power, in his talk for the Alzheimer’s Disease International, remarked that anytime ‘behaviours’ were referred to by clinicians they tended to be used in a negative context.

And there are a number of words specially invented by the medical profession to describe certain behaviours. For example, Witzelsucht (from the German is a set of rare neurological symptoms characterised by a tendency to make puns, or tell inappropriate jokes or pointless stories in socially inappropriate situations.

And such people can be prescribed mood stabilisers, or other non-person-centred therapy.

Excessive crying can happen in some people with dementia, it is said particularly in vascular dementias.

But who is anyone to judge when these behaviours are particularly excessive? It could be that jokes or crying are perceived by that individual living with dementia at that particular place and time to be entirely appropriate.

There are people with vested interests at stake, seeking substantial amounts of money for “challenging behaviours”.  Many people believe that the term “challenging behaviours” is not right, like “problematic behaviours”.

Normally framed as reducing the quality of life of caregivers, challenging behaviour has been linked to behavioural and psychological symptoms of dementia (BPSD). There’s been a lot of money in treating BPSD pharmacologically, but often are actually an understandable consequence of the environment, for example the breakdown of communication of a person living with dementia and surrounding care staff.

If you provoke me, I might get ‘agitated’ or ‘aggressive’, and exhibit ‘challenging behaviours’, but does this mean you should ‘blame me’, and dose me up to the eyeballs with antipsychotic medication?

Rather, such a behaviour may be seen as an active attempt by the person living with dementia to express an unmet need, which could be physiological or psychological. It might be a manifestation of actual distress, or a reaction to the carer, which may lead to a vicious cycle of increasing distress.

However, as Kitwood articulated, ‘personhood’ is the standing or status that is bestowed on one human being by another. It implies recognition, respect and trust. Each person is acknowledged and valued as an individual regardless.

Similarly, if a person with dementia decides to go for a walk, which may well have a clear purpose in his or her mind, it is pejorative to jump to labelling him or her as a ‘wanderer’. I found, when I was reviewing evidence for this for my second book, it was impossible unless I based my literature searches on the words “wanderer” and “wandering” – and so the system validates itself, and the meme “wandering” continues, and no academic or clinician challenges it.

‘Wandering’ is one of those classic words where blame is transferred onto the individual person with dementia – like “getting lost”. The person with dementia there is ‘to blame’, the term is used in a derogatory way, does not concede the person with dementia might have a valid reason to want to leave his or her environment, and defines a person simply by a symptom.

So – the culture of ‘blaming Alice’ continues.

Pathologising Alice

Shibley Rahman 0 Comments

I’ve now seen the ‘Still Alice’ film twice. Once I viewed it with loads of adverts on a bootleg website, and the other time I saw the film without interruption in the large Riverside Theatre of the Alzheimer’s Disease International conference last week in 2015.

The film ‘speaks to’ a specific gene mutation, pre-senilin 1, familially inherited, affecting a young professional with the dementia of the Alzheimer type in a high income country which is relatively resourced well.

There’s not a single physiotherapist, occupational therapist, dietician, or speech and language therapist. It’s just a single clean-shaven clinical neurologist, in a white coat, who can take time off to attend international conferences.

There’s no scene about Alice being recruited into a research trial. Alice even has a brush with residential care, when she goes to visit a home. Alice never discusses a cure by 2025.

Alice is given a diagnosis of Alzheimer’s disease, not any of the other hundred or so dementias. The author cannot possibly cover all possibilities – but she has touched upon two predominant narratives for dementia, “Alzheimerisation” and “medicalisation” of dementia.

Many people across many jurisdictions find themselves lost in a wilderness following a diagnosis of dementia. And indeed many find themselves subject to a ‘prescribed disengagement’, where they are told to pack up their job while their friends circle contracts.

In England, the direction of travel is towards integrating health and social care, with personalised care plans, pooled budgets, clinical care coordinators. Worldwide, the greater scrutiny being given to dementia has led to a rude awakening of the limitations of the medical model of dementia. The supertanker has, despite of Pharma, or maybe even as an abreaction to Pharma, has instead increasingly embraced a social model of disability, with recognition of the implementation of human rights.

Beth Britton once wrote a blogpost saying ‘Cure and cure – let’s not fight about it”. In main party politics, in many jurisdictions, we have an adversarial system. People play their expected rôles, as per “The Truman Show”. Often hearing the other side’s argument helps you to crystallise your own perspective.

The slogan “care for today, cure for tomorrow” is a serious one for some. Evangelists of the cure narrative claim it might be possible to eradicate Alzheimer’s disease if not the hundred dementias eventually. It is not clear in what form the therapy is going to take, such as arresting all dementias in a pre-clinical stage (highly hypothetical).

It has somewhat become more than a slogan or mantra. It fits very neatly into a neoliberal ideology of a small State. If the Pharma experiment fails in Alzheimer’s disease, you can bet your bottom dollar that the situation will be one of socialising the losses, rather than privatising the profits, pardon the pun.

The character Dr Alice Howland does, however, to all intents and purposes wish to live better with Alzheimer’s disease. She appears in coffee shops, going to her daughter’s play, and playing on apps on her smartphone. This is as much as I can go into without providing massive spoilers, of course.

The husband, of course, is awarded high performance grants for biological research, rather than research into living well or care.

But the film, excellent though it is, doesn’t ‘speak to’ low and income countries, but why should it? But the emerging situation is well on the RADAR, with initiatives such as the 10/66 programme of Alzheimer’s Disease International (ADI).

It is worth, however, being forced to think what particular aspect of dementia the film is ‘raising awareness of’. In the panel discussion, the general consensus was that it raised awareness, and it is tempting to find an excuse to dislike the good intentions of Hollywood possibly out of sheer envy.

And indeed we are coming from a very very very low baseline. I have reservations about the term ‘touched by dementia’, but unless you are ‘touched by dementia’, or happen to be involved with dementia somehow otherewise, it’s possible you can end up knowing very little about it. I have met many people who can’t tell me a thing about dementia.

It is not so much awareness which is needed, but outright education. It’s this education we need to address stigma, discrimination and prejudice.

Every long journey starts with the smallest step, and we are in a better place overall when it comes to putting dementia on the agenda. A minority of campaigners do the ‘cause’ a disservice by spreading misinformation about dementia, but, reservedly, any publicity tends to be welcome publicity if language guidelines are observed.

Alice is ‘Still Alice’. That was, by far, the most important message of all.