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.

Indeed, one of the main reasons why we worry so much about dementia is that despite our enormous research efforts we lack effective countermeasures – there is little we can do about it. Another main reason is of course what dementia does to us. The common perception is that dementia is a slippery ride down the cognitive slope, gradually damaging our sense of personhood and agency, until our brains no longer are able to support our authentic selves: a coherent and autonomous personality with which we and our loved ones think of as being truly us. Our personhood withers away, as it were.

 

Paradoxical Lucidity

In recent years, a phenomenon referred to as ‘paradoxical lucidity’ has begun emerging in medical literature, potentially challenging our understanding of what happens to us in dementia.

In 2021, this phenomenon was highlighted in an article in the Guardian, where the peculiarities of paradoxical lucidity in dementia were explored:

 

“It was the red jelly that did it. It was Christmas 1999 in Rapid City, South Dakota, and Ward Porterfield, 83, was in a nursing home. He had been diagnosed with dementia three years earlier; he was confused and disoriented and eventually he no longer recognised his daughter, Kay. “When I went in,” she says of her later visits, “he didn’t know me at all.” That Christmas, he refused to eat. “Finally I just told them: ‘Bring him jello, he likes jello. Red jello.’ And he looked at me, really deeply, and said: ‘So. I suppose the jello’s gonna be my last meal. You’re gonna try to starve me, eh?’ That was like: ‘What’s going on here?’”

Her surprise wasn’t just at his coherence, but that the tone of this reply was undeniably her father’s dry humour. Later that night, nurses told Kay, when children visited to sing carols, tears streamed down Ward’s face. Kay becomes emotional recounting it. “Don’t cry,” a nurse told him. Ward looked at her. “If you were in my position, you’d cry too,” he said. “These are the last Christmas carols I’ll ever hear.”

The next morning when she visited, Ward recognised his daughter instantly. And for the next two days they spoke. “It was as if his mind had been unplugged for so many years,” she remembers, “and then all of a sudden it got plugged back in again.” Then he lost consciousness. Two days later, he died.” (The Guardian, 2021)

 

Paradoxical lucidity, in short, can be described as “an episode of unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioural interaction due to a progressive and pathophysiologic dementing process.”(My italics)(Nahm & Greyson, 2009)

 

Indeed, as exemplified in the above quotation from the story in the Guardian, these lucid episodes typically occur relatively close to death. In fact, similar phenomena of lucidity have been observed in other terminal conditions, where persons appear to gradually “slip away”, as it were, only to display a higher level of awareness just prior to passing. What makes lucidity in late-stage dementia so interesting – and seemingly “paradoxical” – is emphasised by my italics above, in the quote by Nahm & Greyson (2021); the level(s) of awareness displayed simply should not be possible, given the extensive and permanent neural damage assumed to accompany (and cause) the dementia.

 

What might this mean for our perception of dementia?

The working hypotheses as to why we develop dementia will differ between pathologies – Alzheimer’s dementia has one typical set of mechanisms, cardiovascular dementia will have a completely different one, and so forth – but what these models usually have in common is the assumption that our brains suffer irreversible neural damage which increasingly makes it impossible to retain certain memories, skills, and cognitive abilities. Cases of paradoxical lucidity question to which degree this assumption is true: if the impairment is caused by the irreversible loss of neural tissue, then how come we see these patients “re-emerge”, as it were, at the very end before they pass, partly regaining the very memories and mental clarity previously presumed to be permanently damaged and erased? This challenges our understanding of dementia as a progressive and linear set of conditions which gradually cause us to wither away, and raises the possibility that dementia to at least some extent is a condition where our selves are suppressed by our disease, rather than destroyed by it.

 

Why does it matter?

Now, one may argue that it is a strictly scientific question as to how paradoxical lucidity is possible, and one would do so correctly. However, the phenomenon also prompts us to rethink some of our common conceptual assumptions about dementia, and reshape how we may want to address ethical issues in prevention, care, and treatment.

A core concept at stake in dementia is that of personal identity. Indeed, one of the main reasons why people fear dementia is the way it appears to cause our very self to “wither away”. I have written elsewhere on how we may conceptualise and navigate this process (available Open Access here).

What paradoxical lucidity suggests is that our identity may not wither away in dementia after all – at least not to the extent which we might have previously thought. Instead, our selves may be viewed as being suppressed, similar to cases of other neurological conditions where consciousness and personhood may be temporarily impaired or altered, but not necessarily destroyed. This also means that, in principle, the person we previously would have thought not to be “there” anymore, may very much be there, but just impaired in exercising her personhood and agency. If this is correct, much of our work on dementia will need to change its assumptions across domains. In terms of ethical analysis of dementia, this new way of viewing how personal identity is at stake ripples across other values.

 

Take for instance the value of autonomy – one of the core principles of (medical) ethics. We typically hold that it is vital to respect patient autonomy, and that applies to all conditions. However, what it means to respect patient autonomy will differ depending on whether the patient is (A) a fully conscious and competent person, (B) a temporarily incapacitated patient who nonetheless is competent in principle, and (C) a permanently incapacitated patient who irreversibly lost her competency.

Type A covers most healthy adults. Type B includes persons who may be knocked out, suffer from hallucinations, or psychosis. Type C includes persons with severe traumatic (irreparable) brain injury and persons in vegetative states. Now, neither type B nor type C persons are medically competent, and therefore respecting their autonomy is not necessarily equivalent to respecting their current expressed preferences. This separates them from type A persons. However, we seem to think that what it means to respect the autonomy of type B and type C people also differs. For instance, for type C persons, we may believe it to be appropriate to let others (surrogate decision makers) decide whether or not to continue life sustaining treatments, choose what should happen to their property, carry out advance directives, and so forth – all things which seem highly inappropriate in the case of type B persons.

Now, the differences between type A, B, and C persons are not always clear cut. That being said, paradoxical lucidity seems to suggest that in some cases, persons living with dementia – even in later stages – may be more appropriately categorised as type B persons, while we have previously assumed them to be type C persons. If this is the case, we may be acting wrongfully in treating them as type C persons, at least with regard to autonomy.

 

The reframing of dementia, motivated by accounts of paradoxical lucidity and its impacts on identity and autonomy, may alternate our perception of this set of conditions, and further affect the wellbeing of persons living with dementia diagnosis, and that of carers. In this way, paradoxical lucidity in dementia could have massive effects for dementia research and care. It is fascinating to think that, despite all of our efforts, all the resources we have poured into it, and all that we have learned about this set of conditions over the decades, we have yet to uncover just what is going on. But maybe, just maybe, understanding paradoxical lucidity is the key to finally crack the riddle of dementia, and how it affects our sense of agency and identity.

 

References:

1. Nahm, M., & Greyson, B. (2009). Terminal lucidity in patients with chronic schizophrenia and dementia: A survey of the literature. The Journal of nervous and mental disease, 197(12), 942-944.
2. The Guardian (Feb 23, 2021) https://www.theguardian.com/society/2021/feb/23/the-clouds-cleared-what-terminal-lucidity-teaches-us-about-life-death-and-dementia (accessed 17.05.2022)

3. Lyreskog, D. M. (2021). Withering Minds: towards a unified embodied mind theory of personal identity for understanding dementia. Journal of Medical Ethics.