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Blame Alice: how language wilfully produces power imbalances in dementia

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.

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Good luck to Julianne Moore for #Oscars2015

still alice still

Recently, I asked someone living with dementia whether he recommended I should watch “Still Alice”. He is yet to see the film.

He emphatically said, “yes”. In fact, he informed me that he would indeed buy the film if he thought it was any good.

“Still Alice” is a 2014 American drama film written and directed by Richard Glatzer and Wash Westmoreland and based on Lisa Genova’s 2007 bestselling novel of the same name. The film stars Julianne Moore in the role of Dr. Alice Howland, a Columbia linguistics professor diagnosed with early-onset Alzheimer’s disease.

Alec Baldwin plays her husband John, an ambitious medical researcher. Kristen Stewart, Kate Bosworth, and Hunter Parrish play her children Lydia, Anna, and Tom.

I was not looking forward to watching this film at all, despite its brilliant reviews. In a way, the film is in a ‘no win’ space of having not to over-glamourise dementia, and yet simultaneously not to depict it in overwhelmingly negative terms.

As someone who has been an academic and/or practitioner in this field since 1997, I really think the film is an excellent attempt at this very difficult topic.

No one person’s experience of dementia is the same as somebody else’s; and your perception of that person with dementia will depend on a huge number of factors, not least your own preconceptions and the coping strategies of the person living with dementia. The portrayal of Dr Alice Howland is completely believable though.

Dementia doesn’t just affect old people; although your risk of dementia increases as you become old.

The film is to be praised for emphatically demonstrating that the diagnosis of dementia affects friends and families, and not simply a person in isolation. Whilst the character Dr Alice Howland is initially told the possible diagnosis alone, it is clear that the whole family becomes involved.

There is a sense of the ‘prescribed disengagement’ which Kate Swaffer, living with dementia in Australia, has so graphically described. All too often the diagnosis of dementia is articulated as an ‘end’ rather than a beginning. I inevitably watched the film through the prism of how much it promoted the notion that it is possible to live better with dementia.

The effect on work in this particular story is interesting. I am mindful of other criticisms that portraying her as a linguistics professor is over-egging the topic somewhat, but reality can be larger than life. Prof John Hodges’ team in Australia, as is known publicly, was involved in charting the change in language profile of Iris Murdoch, renowned author and wife of Prof John Bayley who has recently sadly passed away.

In someone presenting with a clinical picture of early Alzheimer’s disease, with that particular distribution of abnormal amyloid protein in the brain (although we are not given precise details), as shown by PET neuroimaging, it might be entirely reasonable to seek out a genetic diagnosis such as a presenilin mutation. I realise that Dr Alice Howland is a fictional character, but the issue of how the issue of certain types of dementia might run in families is a very active one both in the US and here in the UK.

I quite liked the use of internet chat in the film. All around the world, there is interest in the intelligent use of technology to connecting unique individuals with dementia to others, and indeed to their past through the method of ‘life story’.

No film on this topic would be expected to be anywhere near perfect, and some of the issues will be raw for many, such as the choice of care homes and behaviour in them. However, I think that this film is as a good attempt as any to cover some hugely important issues.

I of course have reservations about aspects of the plot. Some people I know hated the film and the book. But I do wish Julianne Moore well, and I hope that she wins best Actress in the Oscars 2015 tonight/this morning.

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