The normalisation of unpaid labour in dementia care is nothing short of a national scandal

Like many, I saw the reaction of the media towards the regulatory body, NICE, not recommending the national roll-out of a drug for the treatment of early Alzheimer's disease.

There was huge outrage. CEOs took to the breakfast sofas of TV. The Daily Mail and Daily Express were customarily revolting. You could be forgiven for feeling huge anger at this justice.

Then you realise that the NHS is struggling with its memory clinics. The NHS workforce unit, the artist formerly called Health Education England, is implementing a policy of restricting the number of registered doctors who progress to senior training posts while expanding the numbers of 'physician associates' who've had 2 years training on top of an undergraduate degree.

I am old enough to remember Jeremy Hughes CBE, who used to be the CEO of the Alzheimer's Society, sitting with Jeremy Hunt MP, the former Secretary of State for Health, while Hunt boasted that the UK would be the "best place" to have dementia. "Best place" if you momentarily forgot crippling austerity introduced by George Osborne, from which this country has not ever recovered. A permacrisis in social care with problems in recruitment and retention, further exacerbated by Brexit and a global pandemic.

In as much as scandals have become a normal way of life, take for example Windrush, the Post Office Scandal, the infected blood scandal, and so on, the normalisation of millions of unpaid family carers in dementia must be high up on the list. It is close to what Hannah Arendt, a renowned philosopher, might have used as an example of the 'banality of evil'.

The unpaid carer situation arises from the intersection of the abuse of women in the workforce and capitalism, global macroeconomics imposed by a patriarchy that knows how to avoid taxes and use private equity, a condemnation of older people, particularly those with physical or mental disabilities. Shareholder dividends, and mediocre people with large salaries, are the currency, while millions languish 24/7 to keep their loved ones afloat.

It is no exaggeration to say that unpaid family carers have little or no training in spotting delirium, changing an incontinence pad, providing safe feeding, and so on. The portrayal of social care as a 'being with' activity underplays the need for skilled professionalism inherent in social care. The reality which I saw was paid carers, struggling to go from one job to the next, striving to 'sign in' on time and deliver care within a tight slot. Things were a million time worse in public or religious holidays, with staff shortages, or skeleton transport services.

And the worst thing is that nobody seems to bring this scandal to people's attention. Public health messages on prevention in dementia are totally drowned out by the lure of effects of shiny new drugs with very modest and short-lived benefits, and potentially serious side-effects. NICE appear alone in being responsible over 'opportunity costs' - on whether the money is wisely spent, compared to the next best option.

Mark my words - it is a scandal. Millions of loved ones having to give up paid employment, despite being highly qualified, because they cannot afford professional care or find it. For the years that the current Government in the UK will wish to kick this can, there'll be millions for years suffering from burnout, exhaustion and despair, while doing the most rewarding job of their life.

It's high time we did something about this disgraceful situation.

This scandal has to be tackled.

@dr_shibley

Shibley Rahman is giving a short presentation tomorrow at Westminster Health Forum Events on this subject.