In Praise Of Dementia

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.’[1]

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.[2]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 painted. 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….’[3]

This should not really surprise us. We are quintessentially relational beings, and remain so however many of our neurones are compromised.

References

[1]How to catch a mole, Harvill Secker, 2019; 5, 99

[2]ibid, 105

[3]ibid, 109

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12 Responses to In Praise Of Dementia

  • Trevor Olner says:

    There is nothing praise worthy about Dementia. The person eventually becomes a husk with little or no cognitive awareness. It’s not just about memory . It also effects the body , speech and movement. The fortunate patients die before they get to the worst stages. Anyone who thinks Dementia is praise worthy is in my view a bit of an idiot.

  • Marc Hamer says:

    In ‘How to Catch a Mole I was not contemplating senescence. I use forgetting as a deliberate act of not connecting in any meaningful way to the past, but instead allowing it to flow away and wholeheartedly embrace and immerse myself the present.

  • Ian says:

    It would seem that to appreciate any mental condition/affliction would require a full understanding of any being living within that condition.
    With that perspective this article presents some value which then becomes diluted by considerations of externally applied values.

    In his book: Margalit, A., 2002: The Ethics of Memory. Harvard University Press, on p. 138 states: “The common assumption is that life should be measured by addition, not by subtraction, and that the difference between the two pictures is in what it is that should be added.” and then describes the scientific and literary pictures of memory forming the person and their worldview, as it were. He additionally describes another ‘historically influential picture’ using the symbolism of a sculptor creating their work by removing parts of a marble block, resulting in a state of apatheia, which seems to be what this article is attempting to point towards, or perhaps argue against, but will fail in both where it is interpreted by those whose own worldviews do not allow for those perceptions (and their reactions could taint those who may have less ability to be flexible). Given any life, there is potential for some form of happiness and contentment, can that necessarily be expressed in an understandable way… and how are those expressions interpreted… As recognized by High Series; the lived environment clearly matters more for people with conditions like dementia than is necessarily given credit.
    Some direct personal evidence:- My own visit to an elderly relative in residential care with severe late stage alzheimers only the other week was a sad and yet pleasurable one. Twenty years down that route, in what could be stated to be a vegetative state, she woke, and after some time was able to clearly verbalize a few words and express her genuine pleasure at the visit. Living within a restricted horizon may be difficult in an open social environment, but who makes the moment?

  • Geoff C says:

    The life draining horror of dementia is not lost on the afflicted. They are aware of loss and confusion but without any capacity to rationalise or self sooth.

    If it was a happy slow forgetting of things yes I would agree but it’s not

    it’s pissing yourself because you don’t know where the loo is but knowing the acute shame of pissing yourself.

    It’s hearing fresh every day that a loved one has died.

    There is nothing good in dementia.

  • Ben Walker says:

    Hi Charles,

    I was pointed to this piece by The Browser – it was nice to see your name come up!

    This is an interesting article and it intersects with some other reading about the mind that I’ve been doing lately. I would be interested in hearing your response to a few questions if you’re happy to humour me.

    Why is living in the moment such a positive thing? You allude to insight and the wisdom of sages as benefits as well as not holding onto negative encounters. This doesn’t quite marry with my understanding of “the examined life”, though.

    My understanding is that the examination of one’s experiences in the moment, whether through meditation, mindfulness, or a similar practice, is to gain an insight into the nature of experience itself. The examination is the tool but not the goal.

    In these practices the focus is on reflecting and observing each moment, not on embracing each experience as it arrives. Disciplining oneself not to be derailed by changing experience is a common theme. The insights available are about the fleeting, unsatisfactory nature of experience, as well as the notion of the self (understanding oneself as being the experiences rather than a being who experiences).

    This surely isn’t available to individuals who are living minute-to-minute. They are experiencing fully but I struggle to see how reflection is possible. My fear is that states such as anxiety, fear, and confusion would become more pronounced as they lose a sense of context in the normal ebb and flow of experience. Do you still feel the benefits are obvious and is there a notion of “the examined life” that I have missed?

    It would be lovely to hear from you.

    Ben

  • Charles Foster says:

    Many thanks for this, Ben.
    Why should we live in the moment? I think that there are broadly two answers.
    First: the way that time works means that the present is all that there is. To inhabit anywhere else is to inhabit a virtual reality. And non-virtual creatures are unlikely to thrive in virtual places: they have not evolved to do so.
    One might say that the present moment is the sum of all the moments that have led up to it, and cannot be comprehended without taking those previous moments into account. I would counter that to see the present through the lens of the past is to distort it unrecognisably. But this is a massive debate – not one for now. Let’s defer it to the non-existent future.
    Second: we have very limited capacity to concentrate. To concentrate properly at one time on more than one topic is very difficult. Accordingly unless we concentrate on a small segment of time, we are unlikely to do it justice.
    I agree that some states (you cite anxiety, fear, and confusion’) might ‘become pronounced as they lose a sense of context in the normal ebb and flow of experience.’ Two responses to that: first, the evidence I cite in the post suggests that the overridingly important context for relational humans (which is all humans) is the context of their established human relationships. As long as that is preserved, everything else seems to be bearable – if not actively pleasurable. To go to outlandish places in the company of a beloved companion is a joy: to go to the same place on one’s own is disorienting and distressing. That is my experience of travel: it seems to be a common experience of people with dementia. And second, even if the dominant feeling is wretched – say anxiety – anxiety that last only a few seconds and is replaced with another bout of identical anxiety might be less distressing than the same anxiety continuously experienced. Isn’t it the continuous nature of pain that is often the really unbearable thing? It generates the expectation of future pain, which is crushing. Remember C.S.Lewis’s argumentThey can’t experience true pain, he said, because they don’t have the cognition to realise that the individual unpleasant sensations are part of bigger entity called pain, which will continue. I think that this is a wholly inadequate argument for the proposition that animals don’t feel pain as we know it (I’m sure that many do), but he’s on to something.
    You mention mindfulness. There are some thoughts of mine about what is happening during mindfulness meditation here: http://blog.practicalethics.ox.ac.uk/2016/02/mindfulness-and-morality/ I touch there on the ‘living in the moment’ issue.

  • June Andrews says:

    My first response is to the responders. Trevor Olner impresses upon us that dementia is not just about memory, which is absolutely true. Memory loss, research shows, is not even the thing that troubles people with dementia and their carers most. And I agree with the implication that a quick death is better than a slow one. At least, it’s what I’d prefer. After that we part. Those symptoms are not exclusive to dementia. Dying slowly from most things affects “body, speech and movement” at the end. It doesn’t matter what the final precipitating factor is – stroke, cancer, heart failure, pneumonia. Very many other diseases that affect your body, speech and movement if you’re dying slowly have the added misery that you are cognitively sound and very, very aware of the situation. And maybe even in pain? In that sense, perhaps dementia is kind?
    I hope I’m not misrepresenting Ian’s view if I say he implies that you can’t understand dementia if you haven’t got it. There are people who believe that and when I argue against that idea, they get really angry. It’s a matter of opinion rather than fact, so I’ll not go there in this response because nothing I say would be valued because (as far as I know) I’ve not got dementia.
    The nightmare that Geoff C describes isn’t a nightmare caused by dementia, but by the failure of others around to respond intelligently or kindly to dementia. There’s no need to tell anyone that someone is dead, once you know it’s always news to them and they’ll need to be told again and again. You can adopt a strategy and stop telling them. Thousands of people are incontinent who don’t have dementia and incontinence is not inevitable in dementia. It is always of interest to me that “pissing yourself” is often seen as the ultimate shame, when other people unashamedly “piss themselves” with laughter.
    So, my second response is to Charles Foster the blogger. You took the words from out of my mouth. I don’t fear dementia either. I’ve nursed people dying in intractable pain with pancreatic cancer. Please, not for me. I’ve cared for people with breathing problems who were (sorry for the drama) drowning in their own secretions. Again, I’m sorry but that would be awful compared with dementia. I don’t want dementia but it’s not the worst thing that could happen to me. I’ve lived by my intellect but losing it would be OK, as long as I’m looked after by people who know enough about dementia to reduce my symptoms by reducing my stress in the ways that work best for me. I’m only an observer but I’ve been observing dementia at close quarters for a quarter of a century or more. Like the man says. Bring it on.

  • Geoff C says:

    May I start with apologising for my potentially flippant or emotional first response to the proposition.

    I see in it the a lack of understanding in the full gamut of dementia – everyone gets a different version as people are different.

    We then quickly linked the joys of ‘living in the moment’ to ‘dementia’

    I am a full supporter of living in the moment however difficult life is there can still be a calmness and joy to be had in a moment. There is much to be discussed the moment v differed pleasure etc …

    But the issue is that the ‘dementia’ required to make the initial argument hold good is an illusion it perhaps exists in textbooks and some people may actually experience this kind mental ‘forgetfulness’ that can be taken as comforting to friends and family. May be its the sort of dementia we find acceptable when we don’t wish to look at its true face?

    I was ‘amused’ by the comment that people around the person were failing to respond intelligently or kindly. Please take care when making such statements before fully understanding the condition.

    Demential is selective it does not differentiate between good and bad feelings or memories it destroys both with equal measure to suggest that a calmness can be found in forgetting is looking at the condition through rose tinted glasses.

    I used two examples to explain, I should have been more specific to ensure my point was understood.

    The grief of bereavement – I am not sure who would be cruel or stupid enough to tell a person with demential someone has died, its quite pointless. The bereavement can be of any one at any time in the persons life a 90 year old asking where their mummy is scared and abandoned not remembering that they are 90 and mummy has been dead for 50 years, and in the same sentence asking why their husband hasn’t visited. But suddenly working it all out understanding it all in perfect clarity and sobbing heartbroken that they are both dead. Not just once but time after time.

    Pissing yourself is indeed no shame and when its very much expected just part of life for carers. But to the person with dementia its an acute personal embarrassment that no amount of ‘its OK’, ‘soon get you cleaned up’ friendly loving chat gets anywhere close to alleviating.

    The incontinent know they are incontinent and manage their condition in the knowledge of what it is and how to manage it, I am sure they don’t want to be incontinent but the degree of personal mental anguish is not their they know they are incontinent and can rationalise it.

    The ultimate shame is in the person with dementia it is what they feel and to a carer when needs to be addressed more than the wet pad.

    June & Charles – I am still with you that dementia isn’t the worst way to go I am sure there are many worse ways but please don’t gloss over unpleasant side of dementia to suggest its a slow benign closing down of the brain where a person becomes a more forgetful.

    The screams on the dementia ward are very real.

    Unfortunately unless your keen on suicide we don’t get to pick our exit.

  • Many thanks, Geoff.
    I suspect that we agree on a good deal. One thing on which we certainly agree is that dementia is often horrific – both for the patient and for those caring for the patient.
    You comment: ‘But the issue is that the ‘dementia’ required to make the initial argument hold good is an illusion it perhaps exists in textbooks and some people may actually experience this kind mental ‘forgetfulness’ that can be taken as comforting to friends and family. May be its the sort of dementia we find acceptable when we don’t wish to look at its true face?’ Well, the ‘true face’, as you observe elsewhere, is that dementia manifests in an enormous number of enormously different ways. One of the ‘true faces’ of dementia is visible in the study I cited showing how dementia is experienced in the home/in day care. ‘The screams on the dementia ward are very real’, you observe. Quite right: but the screams are fewer and less agonised at home. Which is precisely what one would expect. Dementia is an identity-affecting condition: if identity is affirmed one would expect dementia’s effects to be at least palliated – if not transformed into something positive. And that’s what the studies show.
    On the incontinence issue: we can agree, I hope, that human dignity is not in fact connected to bladder control. The fact that someone feels that their dignity is compromised when their continence is compromised is disastrous. It is a philosophical mistake that causes tremendous pain and distress. But people can be educated out of their mistakes. Easier said than done, of course. But it is the job that religions have been trying to do for millennia – to convince us that our worth does not consist in or depend on our function.

  • Geoff C says:

    Hi Charles

    I suspect your observations and studies are probably related to earlier stages of dementia, looking back I can see family members fitting your description when they still have some self soothing ability.

    It would be good to understand better when that moment passes, but its a decline to the end not a point. Even at the very end you think there could be a shadow of the personality hiding.

    Perhaps the screams are less agonises because the person can still live a home or day care life, I have seen card games go on for hours as players forget the rules explain them over to each other and enjoy the fact they know they keep forgetting and its ok as everyone is in the same place. I wish this stage could last longer. Think this could be the moment in dementia we can agree on.

    I dearly wish I had used a different example than incontinence! However the compromise of dignity is a good understanding of what is happening across many levels, when is manifests itself its too late to educate as they are long standing beliefs that the person was probably unaware of in life, but develop into a cause for distress when they are outside their control.
    Trying to educate a person with advanced dementia would likely be cruel.

    Religion mmmm ? – I think Christmas day evening visiting was probably the closest I have ever come to punching a well meaning priest who thought it was a good idea to tell me that god was looking after me and my family, I mention this as it reminded me of disassociation and the –

    ‘the death of god’

    This is often used in cases of long standing abuse when the abused first prays, then when there is no answer stops believing.
    There is also disassociation when a person withdraws, at that point our worth is not dependent on function the person withdraws from self.
    Though I have no research to confirm but the outward appearance is very similar in some people with dementia and I think gives them some comfort.

  • Charles Foster says:

    Geoff: thank you.
    The relevance for this debate of the stage of dementia was specifically considered, and discounted, in Banerjee et al, which I cite in the blog post. Nonetheless it would be very surprising if it had no effect at all.
    The education I mentioned was education not of a person with dementia, but of all of us, from birth onwards.
    My point about religion was not that it in fact gives comfort. It may or may not.

  • Ian says:

    June’s interpretation that only people who had dementia could understand it was a misunderstanding of my meaning. That point was about fully understanding the whole person as well as the stages of disease they were in so as to better understand them whilst they deal with their difficulties; and facilitate an appropriate response towards them. Adlerian type theory where the character of the young child is reflected within most adults would indicate the necessity of that as patients relive different times in their life and may switch quickly between different era as different memories arise. Ignoring a patients wishes to bring them back to the present may be a comfortable thing, but does raise the question – should a persons stated wishes be ignored?

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