Strange through it may seem, I have been most influenced in my philosophy of living better with dementia by the late Prof Ronald Dworkin who died in 2013 at the age of 81 (obituary here).
One recent campaign has the tagline ‘Right to know’ from the UK Alzheimer’s Society – about the right for you to know if you have dementia as a diagnosis, a right to treatment, and right to plan for the future.
I feel that people newly diagnosed with dementia have other rights too. I would say that, wouldn’t I. Above all, I feel that people who have received a diagnosis of dementia have a right to live well. This is truly a legal right, as this is not negotiable under the Universal Declaration of Human Rights. Recent case law, in the judgment from Lady Hale in R v Cheshire West and Chester Council (et al), re-emphasises that human rights are inalienable. And given that dementia is a disability under law, the right of that person with dementia is a right to dignity, reinforced by our universal human rights.
Focusing on a right to treatment further consolidates the biomedical model which I think is utterly unjustified. We have just seen the peak of one of the most successful campaigns ever mounted by Pharma and large charities for dementia to raise funds for pharmaceutical approaches to dementia. But at the expense of offering jam tomorrow there was very little on offer for people currently living well with dementia. The answer given to Helga Rohra by the World Dementia Envoy gave little in the way of concrete help for people currently trying to live well with dementia. And the ignorance of this is not benign – for the millions of dollars or pounds sterling spent on molecular biology and orphan drugs for dementia to meet the deadline of 2020, this amount of money is being taken out of the pot for developing the evidence base for and for strategies for living better with dementia in a non-pharmacological way.
Just a minute. Look at the evidence. The medications known as cholinesterase inhibitors are generally thought not to slow down the progression of Alzheimer’s disease in humans, even if they have a short valuable time window of use for symptomatic treatment In the UK, and across the world, there has been a drive for reducing the number of inappropriate prescriptions of antipsychotics for people living with dementia; there is now a growing consensus that where symptoms exist they often are due to a fundamental failure in communication with that person living with dementia, and often other therapeutic routes are much more suitable (such as psychological therapies).
The great FR Leavis, intensely under promoted at Cambridge, reminded us that criticism had to be free and flexible: and hence the famous description of the ideal critical debate as an ongoing process with no final answer: “This is so, isn’t it?” “Yes, but …”
Criticism of the English dementia policy may seem like criticism of senior clinicians, senior personnel in charities or senior politicians, but Leavis gives us a powerful reminder to stand up for what it is right. Surely, people living well with dementia have a right to comprehensive high quality dementia care and support? The evidence in support of multidisciplinary teams, including social work practitioners, speech therapists, doctors, cognitive neuropsychologists, occupational therapists, speech and language therapists, working to produce pro-active plans is now overwhelming. There is now increasing evidence that specialist nursing could prevent many acute admissions to secondary care.
As the late Ronald Dworkin asked us to consider, we might think about what makes an “interpretation” true. As Dworkin notes, psychoanalysts interpret dreams, and lawyers interpret contracts. I would go as far as to say clinicians, of various backgrounds, interpret whether a person presenting with a particular cluster of mainly psychological symptoms is presenting with a dementia. I don’t think the diagnosis of dementia is necessarily easy to make. Given that you’re giving a diagnosis of dementia not just to a person with possible dementia but also to his friends and family it is essential to get right; not to misdiagnose depression as dementia for example. My gut instinct is that doctors of all variety do their utmost to get this diagnosis correct. I think there is also a degree of interpretation in how much a person will successfully adapt to their diagnosis in taking an attitude of ‘living well’, or how they will put their faith in pharmacological treatments. The drugs do work for some people for part of the time after diagnosis, so their importance must not be diminished either. I think there is also a degree of interpretation of how disruptive a diagnosis of dementia might be for that person and his or her community.
Dworkin also notes you would be prone to sack a Judge who said, “I am not sure if this person is guilty or not guilty. I think he’s guilty, but you could probably find great many judges who finds the person not guilty.” It is possible that in the more complicated cases a Doctor might find a person living with dementia, another one not living with dementia. Dementia is presented as a definite diagnosis, a binary decision; but this would be to ignore that even the diagnostic criteria, such as the critical importance of memory (or not), has changed with time. Likewise, there has been a growing conflation of whether you fail a series of tests is the same thing as having a diagnostic label; see for example how some people recorded as having ‘delirium’ in the medical notes have in fact, strictly speaking, failed a specific set of screening tools.
But we can say that there are non-medical routes which are not an idle exercise but are of a person flowing from the diagnosis of probable dementia. This is there is much which can do to enhance the living environment of a person, whether a hospital ward, home or town. Or somebody can be directed towards advocates who can help persons with dementia communicate decisions. Or a person can be directed to inexpensive assistive technologies or lifestyle adjustments that can allow a person to live with dementia just like any other disability. This is framing long term care as living with a condition, rather than the single hit treatment.
Dignity, independence and a vast array of other values will, I feel, are a very necessary outcome of this more helpful approach to dementia. The person who has received a diagnosis of dementia is as much of a need of an acknowledgement of uncertainty as a water-tight explanation. The person who has received a diagnosis of dementia needs to be partnership with the people who wish to share that diagnosis with him or her.
I feel it is now time to unmask the medical professional who may simply be not be able to cope with this cultural shift. The medical profession does not know all the answers, nor indeed do all the people who’ve signed up to the Pharma script.
People who want to live better with dementia can be secure in the knowledge that that is their human right. They have a right to this solution, wherever it comes from.
Is there truth in interpretation? Prof Ronald Dworkin