Returning To Personhood: On The Ethical Significance Of Paradoxical Lucidity In Late-Stage Dementia
By David M Lyreskog
About Dementia
Dementia is a class of medical conditions which typically impair our cognitive abilities and significantly alter our emotional and personal lives. The absolute majority of dementia cases – approximately 70% – are caused by Alzheimer’s disease. Other causes include cardiovascular conditions, Lewy body disease, and Parkinson’s disease. In the UK alone, it is estimated that over 1 million people are currently living with dementia, and that care costs amount to approximately £38 billion a year. Globally, it is estimated that over 55 million people live with dementia in some form, with an expected 10 million increase per year, and the cost of care exceeds £1 trillion. As such, dementia is widely regarded as one of the main medical challenges of our time, along with cancer, and infectious diseases. As a response to this, large amounts of money have been put towards finding solutions over decades. The UK government alone spends over £75 million per year on the search for improved diagnostics, effective treatments, and cures. Yet, dementia remains a terrible enigma, and continues to elude our grasp.
Seminar Recordings: Towards a Plasticity of the Mind – New-ish Ethical Conundrums in Dementia Care, Treatment, and Research
Audio and video recordings of David Lyreskog’s online St Cross Seminar (25 February 2021) are now available.
Dementia, Pagal, or Neurocognitive Disorder: What Is In a Name?
By Doug McConnell
A recent BBC news story has drawn attention to the fact that there isn’t a word for “dementia” in many South Asian languages and some South Asian people living in the UK still use the stigmatising Punjabi word “pagal”, meaning “crazy” or “mad”. The news story implicitly assumes that the word “dementia” is non-stigmatising but this is disputed. If the word “dementia” is itself stigmatizing, are anglophones really in a position to criticize other languages? Can we adopt a non-stigmatising word for dementia? Continue reading
Diet, Changing Desires, and Dementia
Written by Ben Davies
Last week saw the launch of a campaign (run by the group Vegetarian For Life) that seeks to ensure that older people in care who have ethical commitments to a particular diet are not given food that violates those commitments. This is, as the campaign makes clear, a particularly pressing issue for those who have some form of dementia who may not be capable of expressing their commitment.
Those behind the campaign are quite right to note that people’s ethical beliefs should not be ignored simply because they are in care, or have a cognitive impairment (see a Twitter thread where I discuss this with a backer of the campaign). But the idea that one’s dietary ethics must be ‘for life’ got me thinking about a more well-established debate about Advance Directives. (I should stress that what I say here should not be taken to be imputing any particular motivation or philosophical commitments to those behind the campaign itself.)
Video Interview: Richard Holton on Dementia and the Social Self
In this interview with Dr Katrien Devolder (Philosophy, Oxford), Professor Richard Holton (Philosophy, Cambridge) argues that those interacting with people suffering from dementia have an important role to play in buttressing their identity. He also discusses the implications of his views for the role of family and friends in medical decision-making for those with dementia, and for the thorny ethical question of whether doctors should respect their advance directives.
Dementia and the Social Scaffold of Memory
By Jonathan Pugh
The number of individuals suffering with dementia is steadily increasing; as such, the moral issues raised by the neurodegenerative diseases that bring about the symptoms typifying dementia are of pressing practical concern. In this context, Richard Holton’s topic for the first of his three 2018 Uehiro lectures (on the theme “Illness and the Social Self”) is a timely one: What are the ethical implications of the progressive and pervasive loss of memory that is a central feature of dementia?
I shall be blogging a synopsis of each lecture in the series on the Practical Ethics blog – You can find a recording of the lecture here
The last sweet years or bad romance? Handling infidelity in the nursing home
Ulf suffers dementia and lives in a nursing home. He often interacts with Lena, who also has dementia. They seek each other out, invite each other to their rooms, hold hands and kiss. They can clearly express what they prefer (or not). The staff think they enjoy life and each other’s company. There is just one problem for the happy couple: Ulf is married, and his wife is not happy. She and their children strongly dislikes the relation between Ulf and Lena and asks the staff to keep them apart. They argue that if Ulf had been free of dementia he would not have desired contact with Lena; he might sometimes even be confused and think Lena is his wife.
The situation was posed as a question to the ethics committee of the National Board of Health and Welfare in Sweden, and it recently responded that the staff should not try to interfere in the relationship: the welfare and autonomy of Ulf is prior to the wishes of the family. An earlier question dealt with a somewhat similar case, where the cuckolded wife demanded that her husband be both separated from the other woman and medicated to “dampen” him. The committee found that it would be against the autonomy of the man to be medicated against his will, and the staff did not have a right (legally or morally) to prevent patients from seeing each other.
The interesting question is what to make of romances that come about due to dementia. Are they authentic? How do they relate to the interests expressed earlier in life?
A Puzzle about Dementia
Dementia is one of the biggest challenges facing the British NHS, with one in three people developing the disease after the age of 65. This partly explains why there has been such excitement in scientific circles over intravenous immunoglobulin (IVIg), which appears to slow the rate of mental decline in sufferers from Alzheimer’s.
Obviously, from the societal point of view, dementia is a bad thing, and so this news is good. But from the personal point of view, should I be concerned about dementia – at least in its more severe forms? Epicurus famously claimed that we shouldn’t fear death, since when it arrives we won’t be around any more. Many seem to think the same about severe dementia, despite the fact that many – often the same people – also fear such a state.
Here’s how that view might arise. Imagine some extremely unpleasant experience, such as a very painful operation for which anaesthetic is for some reason unavailable. If you’re told you’re about to have such an operation, you will be very afraid, because you think the person under the knife will be you – it is you who will be feeling all that pain. But severe dementia can also be extremely unpleasant, so why isn’t it just like the operation?
There is one big difference. When the surgeon approaches you with her knife, you will have many of the same memories, beliefs, desires, and so on that you have right now. There will be a great deal of what Derek Parfit calls psychological connectedness and continuity between your mental states now and those you’ll have just before the operation. But that isn’t the case with dementia. You will have lost nearly all your memories, and so on. All that will be left is the capacity for conscious experience. And though that conscious experience might be deeply unpleasant, the line of thought goes, that doesn’t matter especially to you, since ‘you’ won’t be around any more, and there will be no important psychological continuity and connectedness between that individual and you now.
My own response to the prospect of dementia, however, is different. I can’t see why it matters very much whether, during the unpleasant experience, I have the same memories, beliefs, and so on that I do now. Consider the painful operation again. It might be so painful that you can’t *think* of anything else while it’s going on – so your memories, beliefs, and so on are entirely inaccessible. Does that somehow make it less bad? What I care about is what will be experienced by the capacity for consciousness I now possess, and if that capacity is going to be exercised in the future in such a way that there is consciousness of seriously unpleasant experiences – whether through some operation, or dementia – that concerns me now whatever memories, beliefs, and so on I am going to have, or indeed lack, in the future.
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