The Reality of Dementia: The Importance of Evidence-Based Therapy and Honest Debate
How has the professional and public awareness of dementia changed – and why?
Dementia in old age has always been known. Affected older people were often described as “doted”, “senile” or “feeble-minded”. In the last century dementia as a symptom of illness was scarcely discussed. Even at the start of this one, most of the people who had dementia remained undiagnosed before they died.
Yet it was known for many years that dementia in the UK was costing the system more than cancer, heart disease and stroke put together. Most delayed discharges – so-called “blocked beds” - in hospitals involved older, female patients with cognitive impairment, but who did not need an acute hospital. The whole system was in trouble, and individual families were struggling.
When the pharmaceutical industry introduced medication that made some difference, it was initially expensive. So, its availability was carefully controlled on the NHS – this limit being exercised by restricting prescription to special clinics, staffed by psychiatrists of old age.
The waiting time for those clinics was long, and getting there depended on having an informed GP who would refer you. Because the medication worked best in the earlier stages of the illness, and indeed only works if the specific dementia is caused by Alzheimer’s disease, many people who might have benefited did not.
They weren’t referred and diagnosed at the right time, if at all. Alzheimer’s organisations, among others, raised awareness, the medication dropped in price, and the population continued to age - most people with dementia being old, or very old.
Governments created diagnostic guidelines and targets, and the public became more aware, so the picture looks quite different now. Still, there are GPs who think that there is not a lot you can do for dementia and that the pressure to diagnose is a sort of conspiracy between the Government and the pharmaceutical industry, which only wants to sell drugs to make money.
You have said, “we need to reframe the public perception of dementia in line with what we know to be true, rather than what we’d like to be true?
We, the public, would like it to be true that there is a cure around the corner, and that the NHS will care for us from the cradle to the grave, without cost at the point of delivery. We also want to believe that being kind to people with dementia is the answer to the problem.
In fact, despite almost weekly headlines on newspaper front pages, there is no prospect of a universal cure - because there are too many causes - and a cure for Alzheimer’s disease, the most prevalent cause of dementia, is still out of reach.
In respect of the NHS, geriatric beds have closed, and the health system expects families to organise arrangements, often at their own expense, for the care of the person with dementia in the last years of their lives outside of the hospital.
Only the poorest will receive financial aid, and care providers say that the state cash provided for poorer people does not even cover the cost of care. Care homes, for example, are often vilified for cashing in on the needs of older people and not giving proper care. In truth, with nearly half a million care home beds in the UK, it is incredible how much is done by them for so little.
We would also like to think that significant changes in dementia can be made by interventions that have not been rigorously evaluated, such as singing for the brain and so on.
A recent Cochrane review indicated that there is no research evidence to support the idea that this sort of thing makes a significant lasting difference to dementia. It is better and more humane than doing nothing, but it is often presented as more than that – actually being called “therapy” but not based on any rigorous, independent evidence.
How has dementia changed in the way it’s been framed in public discourse – and who sets the tone now, how and to what end?
Media is hugely influential. Only this week a UK newspaper with a circulation of over a million was criticised by Alzheimer’s Europe for a front-page headline that seemed to say that ibuprofen, an over-the-counter anti-inflammatory medicine, could cure Alzheimer’s. It is just the latest in a long line of stories that break the hearts of anxious families, desperate for a cure.
Celebrities share their stories in television programmes aimed at the general public. They have a considerable influence on what people think, although much of what they say is not based on evidence. Researcher and writer Philip Darbyshire often talks about the “Lacrimal Validity Score”: the more sentimental something is, the more it must be true.
Every charity that has a project locally or nationally is hungry to demonstrate to funders and other potential donors that the cash given has made a vast difference. This can lead to an overstatement of the effectiveness of interventions, and a reluctance [by others] to challenge people who are “at least doing something.”
The stories fill news outlets, charity websites, conversations at conferences and presentations. Funders are reassured, and potential donors are drawn to a narrative of hope. Economic evaluation is rare, as is a close study of how to scale up the findings. Much is made of little, often to get people to give more funding to an organisation, to sell papers or to further the careers of the commentators.
You have talked of the “cosy ordering of debate” around dementia - how important is a robust discussion in the public arena about the condition?
One has sympathy with politicians. They might want to avoid a discussion that tells the truth about a fundamental shift from societal funding to individual and family funding. They all saw what happened to Theresa May in the last election when she tripped over this one. Insurance companies won’t touch it with a barge pole.
There is a risk that the cost will increase - with longevity, costly increases in required standards for care homes set by unaccountable and risk-averse regulators and with increased wages for the lowest paid direct care staff. But calculating the level of financial risk is so difficult – there can be a feeling that it is best not to talk about it.
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In the light of this, I’d advise every person who can to go and talk to a financial adviser about what their own position is. Ask yourself, how will you pay for your own old age and frailty or that of your parents? And then come home and think about how much tax you are prepared to pay to make sure that people with no finances are cared for decently, and that their carers don’t have to sacrifice their health or career to fill the gap.
The cosy ordering of debate is about the fact that you don’t get very far if you raise difficult questions in this area. How much research is going into things that we are already pretty sure won’t make a difference? How realistic is the campaigning of the charities? How much government funding do they get, and does that influence the extent to which they challenge policy? How many well-funded projects are delivering things that only make a marginal difference to some of the least needy people affected? How does this trope about “living well with dementia” reflect the reality for most people?
When I publicly raised the issue of GPs who believe that someone has dementia but decide not to reveal the diagnosis because they think, “There’s no point”, I got hammered on social media and in medical newspapers by the doctors themselves. People who saw what happened to me decided to be quiet. There are things you are ‘not allowed to say’.
Is the Government doing enough to help those living with dementia, and if not what should it be doing?
The Government is doing a lot for people living with dementia, but not as much as those of us not living with dementia might imagine. That’s why you need to see a personal financial adviser.
I don’t know what I’d do if I were in Government, in the face of an electorate that will remove them if they tell the truth. And that truth is that in future people may be even more on their own than they are today - because the cost is so enormous and no one wants to share it. We don’t want to hear it.
What do you think is the most powerful way to make a positive change for those living with dementia?
Make sure everything practitioners and charities are doing is based on evidence about what works, not just what is nice or a vanity project that makes your organisation look good - or what you have always done.
And tell every citizen that they are, if not entirely on their own, more on their own than they are expecting to be. Finally, look after yourself to delay or reduce the onset and severity of symptoms if it turns out you are one of the (relatively few) unlucky people.
Professor Andrews is a co-author of Ten Helpful Hints for Carers of People with Dementia and The One-Stop Guide to Dementia; Practical Advice for Families, Professionals, and People Living with Dementia and Alzheimer’s Disease.
by Anna, Features Editor
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