I remember once being told that an “alcoholic” is uomebody who drinks as much alcohol as you, but somebody you don’t particularly like.
Culture has an odd way of inflicting labels on people it doesn’t particularly respect. This can be done for entirely political reasons – a need to place a ‘them against us’ division, like the term ‘benefit scroungers’ for people who cannot find gainful employment.
I remember when I went to the Alzheimer’s Show last year, and a senior consultant in psychiatry gave a talk on ‘challenging behaviours and BPSD’. I challenged him at the end for whom did he deem the behaviour challenging – for the person with dementia distressed, or for the professional who wanted a quiet shift?
I then shortly afterwards went to an evening of a drug company sponsored CPD session on frailty. The GP presenting the case study kicked off with the line ’83 y.o. demented F’. I asked the presenter to justify the use of the word ‘demented’ in his case study. He informed me it was about as pejorative, and equally inoffensive, as saying ‘wheelchair user’.
I don’t want to enter into a discussion about normative morality. That is way beyond the scope of this blogpost. But there comes a time when you simply can’t cope with the deluge of cultural impropriety.
Two events happened back to back only yesterday. For example, a friend of mine, in an otherwise good article in a tabloid, was called ‘Dementia sufferer’ in the title. A press release about a forthcoming BBC programme on cures and dementia was littered with the word ‘sufferer’.
But I have recently been doing a lot of work in education of dementia, and it shocks me how entrenched the BPSD dogma is. I simply don’t want teaching I am involved in with to perpetuate knowingly this misfeasance.
‘Person-centred care’ is a much used and abused term. But dealing with failures in communication with a person who lives with dementia but who is distressed is a more ethical (and cheaper) way of behaving, other than pimping money out at Big Pharma.
An individual who’s received a diagnosis of dementia has a right to be angry, agitated, anxious or depressed at conscionable behaviour from a carer or professional, for example. An individual who’s received a diagnosis of dementia is therefore entitled to feel emotions if provoked.
What this situation does not give professionals a right to do is to drug innocent people with dementia always to prescribe antipsychotics inappropriately as a ‘chemical cosh‘.
In parallel to the human right to live with dignity, found in the European Convention of Human Rights which we can all petition over in England and Wales if we are a signatory, irrespective of the Human Rights Act (1999), there’s an expectation that patients of the NHS are not subject to assault and battery from inappropriate medications.
Whilst many of us are saddened by the lack of clarity in the current Government assaulting the legislation over human rights, we also take some comfort in devolution. Scotland is a clear example of an administrative style in one country. Manchester has been another. Maybe with the election of Sadiq Khan in London today we may have another example of a devolved infrastructure, which can distance itself from Westminster, and act as a nestbed for the integration of health and social care?
Be in no doubt – it takes a long time to alter the directions of supertankers. Dementia Alliance International has been campaigning hard on this for a few years now, and as the only influential international stakeholder group run by people with dementia, many of us wish them well.