By David M Lyreskog
About Dementia
Dementia is a category of medical situations which generally impair our cognitive skills and considerably alter our emotional and private lives. Absolutely the majority of dementia instances – roughly 70% – are brought on by Alzheimer’s illness. Different causes embody cardiovascular situations, Lewy physique illness, and Parkinson’s illness. Within the UK alone, it’s estimated that over 1 million individuals are presently dwelling with dementia, and that care prices quantity to roughly £38 billion a 12 months. Globally, it’s estimated that over 55 million individuals reside with dementia in some type, with an anticipated 10 million improve per 12 months, and the price of care exceeds £1 trillion. As such, dementia is extensively considered one of many major medical challenges of our time, together with most cancers, and infectious illnesses. As a response to this, giant quantities of cash have been put in the direction of discovering options over many years. The UK authorities alone spends over £75 million per 12 months on the seek for improved diagnostics, efficient therapies, and cures. But, dementia stays a horrible enigma, and continues to elude our grasp.
Certainly, one of many major the reason why we fear a lot about dementia is that regardless of our monumental analysis efforts we lack efficient countermeasures – there may be little we are able to do about it. One other major cause is after all what dementia does to us. The frequent notion is that dementia is a slippery journey down the cognitive slope, regularly damaging our sense of personhood and company, till our brains now not are in a position to help our genuine selves: a coherent and autonomous persona with which we and our family members consider as being actually us. Our personhood withers away, because it had been.
Paradoxical Lucidity
In recent times, a phenomenon known as ‘paradoxical lucidity’ has begun rising in medical literature, doubtlessly difficult our understanding of what occurs to us in dementia.
In 2021, this phenomenon was highlighted in an article within the Guardian, the place the peculiarities of paradoxical lucidity in dementia had been explored:
“It was the purple jelly that did it. It was Christmas 1999 in Speedy Metropolis, South Dakota, and Ward Porterfield, 83, was in a nursing dwelling. He had been identified with dementia three years earlier; he was confused and disoriented and finally he now not recognised his daughter, Kay. “After I went in,” she says of her later visits, “he didn’t know me in any respect.” That Christmas, he refused to eat. “Lastly I simply advised them: ‘Carry him jello, he likes jello. Purple jello.’ And he checked out me, actually deeply, and mentioned: ‘So. I suppose the jello’s gonna be my final meal. You’re gonna attempt to starve me, eh?’ That was like: ‘What’s occurring right here?’”
Her shock wasn’t simply at his coherence, however that the tone of this reply was undeniably her father’s dry humour. Later that night time, nurses advised Kay, when kids visited to sing carols, tears streamed down Ward’s face. Kay turns into emotional recounting it. “Don’t cry,” a nurse advised him. Ward checked out her. “In the event you had been in my place, you’d cry too,” he mentioned. “These are the final Christmas carols I’ll ever hear.”
The subsequent morning when she visited, Ward recognised his daughter immediately. And for the subsequent two days they spoke. “It was as if his thoughts had been unplugged for thus a few years,” she remembers, “after which rapidly it bought plugged again in once more.” Then he misplaced consciousness. Two days later, he died.” (The Guardian, 2021)
Paradoxical lucidity, in brief, might be described as “an episode of surprising, spontaneous, significant, and related communication or connectedness in a affected person who’s assumed to have completely misplaced the capability for coherent verbal or behavioural interplay resulting from a progressive and pathophysiologic dementing course of.”(My italics)(Nahm & Greyson, 2009)
Certainly, as exemplified within the above citation from the story within the Guardian, these lucid episodes sometimes happen comparatively near demise. In reality, comparable phenomena of lucidity have been noticed in different terminal situations, the place individuals seem to regularly “slip away”, because it had been, solely to show a better stage of consciousness simply previous to passing. What makes lucidity in late-stage dementia so attention-grabbing – and seemingly “paradoxical” – is emphasised by my italics above, within the quote by Nahm & Greyson (2021); the extent(s) of consciousness displayed merely shouldn’t be potential, given the intensive and everlasting neural harm assumed to accompany (and trigger) the dementia.
What may this imply for our notion 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 could have a totally completely different one, and so forth – however what these fashions normally have in frequent is the belief that our brains undergo irreversible neural harm which more and more makes it unimaginable to retain sure recollections, expertise, and cognitive skills. Instances of paradoxical lucidity query to which diploma this assumption is true: if the impairment is brought on by the irreversible lack of neural tissue, then how come we see these sufferers “re-emerge”, because it had been, on the very finish earlier than they go, partly regaining the very recollections and psychological readability beforehand presumed to be completely broken and erased? This challenges our understanding of dementia as a progressive and linear set of situations which regularly trigger us to wither away, and raises the chance that dementia to at the very least some extent is a situation the place our selves are suppressed by our illness, somewhat than destroyed by it.
Why does it matter?
Now, one might argue that it’s a strictly scientific query as to how paradoxical lucidity is feasible, and one would accomplish that appropriately. Nonetheless, the phenomenon additionally prompts us to rethink a few of our frequent conceptual assumptions about dementia, and reshape how we might wish to deal with moral points in prevention, care, and remedy.
A core idea at stake in dementia is that of private id. Certainly, one of many major the reason why individuals worry dementia is the best way it seems to trigger our very self to “wither away”. I’ve written elsewhere on how we might conceptualise and navigate this course of (out there Open Entry here).
What paradoxical lucidity suggests is that our id might not wither away in dementia in spite of everything – at the very least to not the extent which we’d have beforehand thought. As a substitute, our selves could also be seen as being suppressed, just like instances of different neurological situations the place consciousness and personhood could also be quickly impaired or altered, however not essentially destroyed. This additionally implies that, in precept, the individual we beforehand would have thought to not be “there” anymore, might very a lot be there, however simply impaired in exercising her personhood and company. If that is appropriate, a lot of our work on dementia might want to change its assumptions throughout domains. By way of moral evaluation of dementia, this new manner of viewing how private id is at stake ripples throughout different values.
Take as an example the worth of autonomy – one of many core ideas of (medical) ethics. We sometimes maintain that it’s important to respect affected person autonomy, and that applies to all situations. Nonetheless, what it means to respect affected person autonomy will differ relying on whether or not the affected person is (A) a totally aware and competent individual, (B) a quickly incapacitated affected person who nonetheless is competent in precept, and (C) a completely incapacitated affected person who irreversibly misplaced her competency.
Sort A covers most wholesome adults. Sort B consists of individuals who could also be knocked out, undergo from hallucinations, or psychosis. Sort C consists of individuals with extreme traumatic (irreparable) mind damage and individuals in vegetative states. Now, neither kind B nor kind C individuals are medically competent, and due to this fact respecting their autonomy shouldn’t be essentially equal to respecting their present expressed preferences. This separates them from kind A persons’. Nonetheless, we appear to assume that what it means to respect the autonomy of kind B and kind C individuals additionally differs. As an example, for kind C individuals, we might imagine it to be acceptable to let others (surrogate resolution makers) determine whether or not or to not proceed life sustaining therapies, select what ought to occur to their property, perform advance directives, and so forth – all issues which appear extremely inappropriate within the case of kind B individuals.
Now, the variations between kind A, B, and C individuals usually are not all the time clear reduce. That being mentioned, paradoxical lucidity appears to counsel that in some instances, individuals dwelling with dementia – even in later phases – could also be extra appropriately categorised as kind B individuals, whereas we have now beforehand assumed them to be kind C individuals. If so, we could also be appearing wrongfully in treating them as kind C individuals, at the very least with regard to autonomy.
The reframing of dementia, motivated by accounts of paradoxical lucidity and its impacts on id and autonomy, might alternate our notion of this set of situations, and additional have an effect on the wellbeing of individuals dwelling with dementia prognosis, and that of carers. On this manner, paradoxical lucidity in dementia may have huge results for dementia analysis and care. It’s fascinating to assume that, regardless of all of our efforts, all of the sources we have now poured into it, and all that we have now realized about this set of situations over the many years, we have now but to uncover simply what’s going on. However possibly, simply possibly, understanding paradoxical lucidity is the important thing to lastly crack the riddle of dementia, and the way it impacts our sense of company and id.
References:
- Nahm, M., & Greyson, B. (2009). Terminal lucidity in sufferers with continual schizophrenia and dementia: A survey of the literature. The Journal of nervous and psychological illness, 197(12), 942-944.
- 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)
- Lyreskog, D. M. (2021). Withering Minds: in the direction of a unified embodied thoughts idea of private id for understanding dementia. Journal of Medical Ethics.
