On dementia

There are a lot of illnesses which, were you to catch them, could potentially be terminal. The NHS exists to ensure whatever medical misfortunes befall you, help is dependent on your need, not your bank balance. It is, perhaps rightly, regarded as Labour’s finest achievement. But, like all Labour achievements it was a compromise. From the very start Nye Bevan was forced to compromise in order to get doctors to take part. That compromise meant that from its very inception the principle of public need had to coexist alongside private provision for those who could afford it.

Nowhere is this failure to make principle of need the driving force of health policy more apparent than in social care. And, whilst residential social care is not exclusively for elderly dementia patients, in the treatment of that particular group we see everything which is wrong both with the medical model and the hybrid notion of allowing private companies to run public provision.

It is estimated the number of people living with dementia is increasing dramatically with around 10 million additional cases, worldwide, each year. This is in addition to the 55 million people worldwide living with dementia currently according to the World Health Organisation, a figure which is expected to rise to 78 million by 2030.

Alzheimers

The Alzheimer’s Society describe dementia as:

“a group of symptoms associated with a decline in memory, reasoning or other thinking skills. Many different types of dementia exist, and many conditions cause it.”

Alzheimer’s, which accounts for around 60-70% of dementia cases is described as:

“a degenerative brain disease that is caused by complex brain changes following cell damage. It leads to dementia symptoms that gradually worsen over time. The most common early symptom of Alzheimer’s is trouble remembering new information because the disease typically impacts the part of the brain associated with learning first.”

There are around one million people in the UK living with dementia. At present there is no known cure. About one third of those living with dementia are doing so in residential care homes.

The market in social care is huge. The National Audit Office estimated it at over £18 billion last year with an expectation that it will rise to £37.7 billion by 2038. But, here’s the rub; you might think dementia is a disease like any other and should, therefore, be treated within the NHS. But, as we have already noted there is no cure for dementia and subsequently no treatment. Frankly, the medical profession are not keen to be dealing with patients who they can do nothing for.

When you receive a diagnosis of dementia that is, pretty much, it, as far as your doctor is concerned. If you are lucky you might be referred to a ‘memory clinic’ but as those living with dementia will tell you, you are, more or less, written off. Wendy Mitchell, who has early onset dementia and has written a book on the topic, says:

“When you have a stroke, then you get physio. Here, there was nothing: it was just, like, a sad face, and ‘I’m sorry, nice meeting you, goodbye.’ It took me ages to get round that fact.”
Wendy Mitchell, Somebody I Used To Know

Dementia is a terrible disease which affects your cognitive and physical functioning. Which, you might think, makes it even more important that those living with it are provided with adequate support. Moreover, what are called ‘informal carers’, that’s wives, husbands, partners and family members to you and I, need help to cope.

Still Alice

In films, such as Still Alice (based on the book by Lisa Genova), whilst the confusion of the person losing their ability to function is shown, the subjects are always blessed with sufficient resources. But, for those coping with a relative with dementia added to the stress of seeing them ‘disappear’ before your eyes, is the added on stress of how to pay for the care they need. If, as a comparison, you had a heart attack nobody is going to suggest you have to sell your house in order to pay for the nursing care you need. But, that is a very real possibility if you are diagnosed with dementia. The way in which people, already dealing with the blow of receiving a devastating diagnosis, are forced to worry about how they are going to pay for the care they will need is nothing short of cruel and unnecessary.

When my Father was diagnosed with dementia my Mother could barely cope with the reality of seeing the man she had loved for nearly 70 years unable to cope with everyday tasks, but, on top of this, to find their life savings were at risk when she sought the residential care he needed was simply piling anxiety upon anxiety.

The National Audit Office estimates that as of 2020 there were around 28,500 care homes in England catering for 839,000 adults. The cost to local authorities, who fund over 70% of care places is a massive £16 billion per year. And, year on year, that figure is growing as demand increases at the same pace as the private companies prices. And this excludes figures for Wales, Scotland and Northern Ireland, where health and social care is devolved.

Profits

In 2017 HC-One, the largest of the companies involved in social care with a net worth estimated at around £30 billion, paid out £42 million in dividends to directors and shareholders. That is money taken from local authorities (your Council Taxes) and private individuals (many of them losing their life savings to support a loved one) and transferred directly to people whose main interest in care is caring how much profit they can make.

In effect, social care is the epitome of a capitalist industry, bar the exception that they don’t actually create any value, in that whilst wanting a reduced state, they are happy to be parasitic upon state handouts. Very often we hear individual claimants described as ‘scroungers’ or ‘parasites’. But there are no greater parasites than the leeches who infect our health and social care system.

But, you might argue, these industries provide jobs. This, of course, is true. The Kings Fund estimate there are around 1.5 million people employed in social care in England alone. Counting Wales, Scotland and Northern Ireland, that is close to 2 million. That is a lot of jobs. And, the work they do is important and valuable. How valuable is probably best assessed by the wages they get paid. The average hourly pay is £8-10. Or £16-23k a year. HC-One’s top director is paid £800,000 a year. You might notice the imbalance.

Time for change

The growth in dementia, which shows no sign of abating, is fuelling the growth in social care. But, surely dementia is an illness and should be regarded no differently to any other illness? There has always been within our health professionals an attitude that if you cannot treat symptoms then it is not a medical condition at all. That has to change. And, so does the view that the opinions of families and loved ones are not important. At the same time, those who care for our most vulnerable citizens need proper remuneration and proper training (not the two half hour videos given to one carer I know).

There is no strong case for introducing profit into healthcare at any level. Even less so in the case of social care. But, privatisation has become the answer to all our social problems. As if markets with their recurring cycles of boom and bust have proved models of efficiency. There is, within our present system, no quick and easy fix for the mess that successive governments have made of health and social care. But, just for starters we might consider the following:

better paid, but also better trained, staff;
a genuinely independent, and publicly accountable, regulatory body;
the total removal of the profit motive from health and social care, making provision free at the point of use and an integrated care system that was not just a smokescreen for more cuts and more privatisation.

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