Posted on May 2, 2019 at 5:52 AM
By Charles Foster
Statistically there is a good chance that I will ultimately develop dementia. It is one of the most feared conditions, but bring it on, I say.
It will strip me of some of my precious memories and some of my cognitive function, but it will also strip me of many of the neuroses that make life wretched. It may (but see below) make me anxious because the world takes on an unaccustomed form, but surely there are worse anxieties that are dependent on full function – such as hypochondriacal worries, or the worry that comes from watching the gradual march of a terminal illness. On balance the trade seems a good one.
Is dementia itself akin to a terminal disease – annihilating Charles Foster 1 and replacing him with an inferior model (Charles Foster 2)? If so, then perhaps it is as culpable as a murderer. And perhaps there is a moral duty to resist it and to declaim that its results are diabolical? The full argument is one for another day, but I hope that I am more than my memories, and I certainly conduct the rest of my bioethical thinking on the assumption that moral status does not haemorrhage away when neurones are lost.
In any event, might it not be morally desirable (quite apart from my own feelings about it) to lose a lot of my brain function? The nature writer Marc Hamer, contemplating his own senescence, welcomes forgetfulness because it aids forgiveness and enables one to live (as many sages urge that one should) in the present: ‘Really I want to forget. Forgetting is freedom and forgiveness but more than anything it is a process of immersing myself in what is happening now…I let things be what they are….I forget easily and willingly, and because of this Peggy [his wife] and I rarely argue. Each day begins with a forgiveness for things that may or may not have happened.’
One might say that this is not a description of real forgiveness, because forgiveness entails contemplation of that that is forgiven, and hence that (amongst its many other sins) dementia deprives the sufferer of the opportunity to do the praiseworthy act of true forgiving. But if one judges morality in terms of the wrongs or harms that are done by a person, there is perhaps a strenuous moral case to be made for at least some degree of amnesia.
In terms of the thriving of the individual, can it not be said, too, that forgetfulness is a benefit? Will it not help me to inhabit the moment, rather than some vanished past or illusory future? If the examined life is the life worth living, I’ll be able to examine my life far more fully if it only lasts a minute in my perception. Dementia might be a highroad to holism, and hence to moral integrity.
I’m expecting howls of protest at all this. Am I not being grossly insensitive? Have I never been on a dementia ward? Have I never seen the distress of many dementia patients? And have I no idea of the appalling consequences of the diagnosis for relatives and carers? Well, I do know a bit from first hand, but I have also read a good deal of the relevant literature.
The psychiatrist Hugh Series, in a book edited by me, Jonathan Herring, and Issi Doron observes that there is a dearth of research on the views of people with dementia.It seems to have been assumed that the fact of the diagnosis made it inappropriate to ask dementia patients what they thought of their own lives.
But when they are asked, the results are interesting and perhaps surprising.
Let’s start with some evidence that tends to support the traditional picture of dementia as a relentlessly awful disease for everyone touched by it. Aggarwal et al (2003), in a study of 27 patients with dementia and 28 relatives, that 100% of the patients described feelings of loss of independence, 56% frustration or anger, 48% sadness or depression, and 96% problems with communication. They tended to be very critical of residential homes, on the grounds that there were few activities, and choices were restricted. These criticisms weren’t universal. Two residents said that they were relatively happy. And, interestingly, comments about day care were much more positive.
Which brings me to the study of Cahill et al (2004), which investigated the views of 98 dementia patients living in their own homes.
Most of Cahill’s respondents reported positive feelings very often, often, or sometimes. More than 70% said that they enjoyed a good, very good, or excellent quality of life: only 15% said that their quality of life was bad.
Of course the two samples are not medically comparable. The patients in residential care tended to be there precisely because they were more impaired by their dementia than those living in their own homes. But one should not necessarily conclude from this that quality of life deteriorates as the dementia progresses. Banerjee et al (2006), in a study of 101 dementia patients, 99 of whom had family carers, concluded that quality of life did not correlate with the severity of the dementia or the functional limitations resulting from the dementia. The social environment seems to be more important than the neurology.
Generalisations about dementia are difficult and dangerous. There are many different types of pathology, and many different manifestations. The picture is complex. But the picture is very different from that commonly panted. Hugh Series summarises:
‘Is it possible to be happy with dementia? Yes, anecdotes and research studies indicate that it clearly is. Many factors affect this…Perhaps most significant of all is the reaction of those around one, and how long one is able to continue to live at home….’
This should not really surprise us. We are quintessentially relational beings, and remain so however many of our neurones are compromised.
How to catch a mole, Harvill Secker, 2019; 5, 99