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Life & Death

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20 September 2024

6 min read

A Tolkien poem helps a nurse understand the ravages of dementia

'Not all who wander are lost.'

Helen Cowan

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

An elderly woman wearing headphone looks up and to the side with a big smile.

Playlist for Life

Not all who wander are lost.

Often written on a care home wall, on an inspirational poster, these words are usually set against a forest background, or compass, for added effect. They have also been used as the title of a conference paper discussing so-called smart trackers for people with dementia, whilst, Not all who wander need be lost is the title of a concise guide to navigating the heartbreaking challenges when a loved one is diagnosed with Alzheimer’s disease or other dementia.

As a care home nurse for more than ten years, I have seen residents wander - not lost but “walking with purpose”, as it is sometimes known in the caring community. “Nobody gets up and walks without a reason,” says Suzanne Mumford, Care UK's Head of Nursing, Care and Dementia; perhaps they are easing pain, or boredom, or looking for something that they can’t describe. I remember residents exploring, enquiring into self-made mysteries solvable only by themselves, examining everything from door handles to another resident’s buttons, even escaping with surprising speed. Walking with them, often in silence, can bring a sense of relief, comfort and companionship.

What I didn’t know was that this is a quotation from a poem by JRR Tolkien, published in The Fellowship of the Ring seventy years ago. The actual line is - “Not all those who wander are lost”.

All that is gold does not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.

From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.”

We first hear this poem in Chapter Ten of Book One, as Frodo reads it in the postscript of a letter from Gandalf. As I read it, the imagery of being lost, withered, frost-bitten, in darkness, burned and broken, speaks something, in poetic picture language, of the ravages of dementia, the harrowing losses, the valley of tears. It brings to mind residents unaware of familiar objects or surroundings, looking straight through loved ones without a flicker of recognition, losing also language, continence, mobility and the ability to swallow.

The TV presenter Fiona Philips recalled an agonising decline in her mother as she succumbed to Alzheimer’s, describing how, in the final stages, her mother “spent whole chunks of time just sitting and staring ahead, only able to give out a series of sounds”. Fiona herself now lives with dementia. “'It’s devastated my family and it’s the biggest health and social care challenge we face as a country,” she says.

I once interviewed retired doctor Jennifer Bute, who lives with dementia. She talked of time travel (perceiving herself as living in a time from her past); disorientation to place and person; frightening hallucinations when old memories are seemingly ‘unlocked’; and ‘emotional unzipping’ when agitation and anxiety increase, often in the late afternoon or evening in something poorly understood as a symptom, known as ‘sundowning’.

Yet there is something more to this poem – each of the pains has a promise – not all who wander are lost; the old that is strong does not wither; and, most poignantly, deep roots are not touched by the frost. In dementia, it is true that deep roots are untouched, that an enduring aspect of a person’s identity never truly withers, though it may be mostly unseen. Something remains. Oliver Sacks the famous neurologist emphasised that, even in the late stages of Alzheimer’s, the person is still ‘alive inside’ (the inspiring documentary with this title is recommended). In stunning real-life stories, he has shown how music appears to ‘call back the self’, awakening moods, memories and thoughts that had seemingly been lost. He refers to music’s extraordinary ‘neural robustness’ and describes one man, unable to tie his tie or find his way to the stage, yet able to perform a perfect piano solo. In one life-affirming, must-watch, tear-jerking video, gospel music was shown to enliven, calm, focus and engage a man simply known as Henry.

Watch Henry

Singing can “provide islands of arousal and awareness like nothing else can”, according to Alicia Clair, Professor of Music Therapy. I’ve seen singing bring the person into the present for a passing moment, illuminating a face that seemed far away. One otherwise-silent lady completed the chorus of ‘Daisy, Daisy’ before descending into dementia again. Others have laughed, clapped, danced, embraced and even shed a silent tear during music therapy sessions, when music elicits memory. Doll therapy meanwhile has sometimes restored and revealed a sense of nurture, purpose, care and pride, with residents feeding their new friend before accepting their own food, folding its clothes and taking care of it cradled in their arms. Though it divides opinion, a doll can preserve dignity if it de-escalates agitation or engagement in physical or verbal abuse; a sense of dignity also comes from the person being able momentarily to give care rather than receive it.

“From the ashes a fire shall be woken, A light from the shadows shall spring; Renewed shall be blade that was broken,” continues Tolkien's poem, and, though not the original intention, these powerful images of renewal and restoration paint a picture of something known as “paradoxical lucidity”, or unexpected cognitive lucidity and communication in some patients with severe dementia, especially around the time of death (though sometimes long before).

Anecdotes are recorded 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 behavioral interaction due to a progressive and pathophysiologic dementing process”. Some scientists are seeing them as a paradigm shift in the understanding and perhaps even treatment of dementia. I will never forget when a woman in the late stages of dementia, with little spoken language, was brought back to the nursing home weeks after hospital admission; she had been perilously ill. With bright eyes, she took my arm and, as if the mist had cleared for a moment, spoke warmest words of thanks to me for helping her on the day she collapsed. In another fleeting and irreproducible moment, a lady wished me happy birthday, before continuing her silent walk around the home. Witnessing such an event is ethically and emotionally transformative.

The concept of remaining ‘alive inside’ even when abilities, language and memory are eroded by dementia is taken to the next level in Christianity, which teaches that life continues even after death itself. The Bible speaks of new life beyond the grave; the fire shall be woken, a light shall spring. And there will be a crown (and the gold will glitter). The Crown of Life is referred to, being bestowed upon "those who persevere under trials." Dementia is one of life’s severest trials; a cross to bear. In the 1912 hymn “The Old Rugged Cross”, another cross is spoken of, being the cross of Christ at his crucifixion. Clinging to that cross, living out a Christian life, the hymnwriter wrote of “exchanging the cross for a crown” at life’s end. After ashes, hope awaits the Christian.

Playlist for Life is a charity encouraging people to create playlists for people living with dementia.

Playlist for Life

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Life & Death

29 August 2024

4 min read

A Bayesian theory of death

The sinking of the superyacht displays the probability, and banality, of death.

George Pitcher

George is a visiting fellow at the London School of Economics and an Anglican priest.

Rescue workers look at the plan of a yacht.

The search for the Bayesian.

Vigili del Fuoco.

On any statistical calculation, the probability of dying by drowning when your luxury yacht suddenly and inexplicably sinks at anchor in the Mediterranean has to be extremely low.

So it’s the cruellest of ironies that tech tycoon Mike Lynch should so die, along with his daughter and five others, having devoted his commercial life to the application of such statistical probabilities. He had named his yacht Bayesian after the 18th-century theorem that introduced the idea that probability expresses a degree of belief in an event.

That doesn’t expressly mean religious belief. But, intriguingly, it doesn’t exclude it either. According to Thomas Bayes, who published his theorem in 1763, the calculable degree of belief may be based on prior knowledge about an event, such as the results of previous experiments, or on personal beliefs about it.

In essence, you don’t believe your yacht will capsize in the night and sink in seconds, because your experience tells you so. That belief can mathematically be included in the probability of it happening.

We can transfer the method into religious praxis. Christian belief in the event of resurrection, for instance, can be calculated in the probability that the deaths of the Lynches and others aboard the Bayesian are not the end of their existence.

It’s an intriguing legacy of Lynch’s work for theologians. But it’s the sheer lack of probability of the lethal event occurring at all that lends it its random banality. It’s that death visited those asleep on a yacht in the small hours that lends this news story such tireless legs, not just that these were super-rich masters and mistresses of the universe.

There have been bitter observations on social media that the Bayesian’s victims have commanded limitlessly greater attention than the many thousands of refugees who die in small-boat crossings of the Mediterranean every year.

This is a category mistake. And again, Bayesian theory can be deployed. Experience supports our belief that crossing the sea in overcrowded and unseaworthy vessels can all too often lead to tragically terminal events. The probability of death is plain. Again, it’s the sheer randomness of the Bayesian yacht event that sets it apart.

If death can visit at any time, there can be no difference in the valuation of long or short lives.

That randomness brings us back to the banality of sudden death among us, almost its ordinariness, something that just happens, often entirely out of the blue. The prayer book has the funeral words “in the midst of life we are in death”, meaning that death is our constant living companion. But that doesn’t quite cut it for me, because it tells us it’s there, but nothing of its true significance.

The tenets of Christian faith are regularly said to be those of a death cult; that it’s a deep-seated fear of death that leads us to avoid it with assurances of eternal life. But it’s the sheer banality of death, as displayed in the randomness of the Bayesian event, that seems to knock down that idea. In its randomness, death looks ridiculous rather than evil.

Conspiracy theories around the sinking of the Bayesian are a kind of denial of the reality of death too. We want there to be more to it than the utterly banal.

Author Hannah Arendt coined the phrase “the banality of evil” when covering the trial of Nazi holocaust architect Adolf Eichmann in Jerusalem. I’d want to suggest that it’s that same banality, that basic human ordinariness, that is the real nature of the supposed grim reaper, rather than his evil.

None of this can comfort the Lynch family, who mourn the loss of a much-loved father and his young daughter, or the families of the others who lost their lives on the Bayesian. But it is meant to go some way towards an explanation of what we mean in Christian theology when we bandy about phrases such as “the defeat of death”. Because it’s not a wicked serpent that’s been defeated, more of a pointless clown.

There is something especially painful about the death of the young, such as that of 18-year-old Hannah Lynch on the Bayesian that night, a young woman on the threshold of life. And – God knows – the even younger lives we’ve read about being taken lately.

But the concept of banality may lead us to another tenet of faith: The completeness of every life. If death can visit at any time, there can be no difference in the valuation of long or short lives.

A poem, often ascribed to a former dean of St Paul’s cathedral, begins with the line: “Death is nothing at all.” That’s wrong, as an idea. Death is as significant an event as birth. But its defeat is in keeping it in its place.

The dignity in simplicity with which football manager Sven-Göran Eriksson greeted his final illness is a masterclass in this tactic for life. Death isn’t to be negotiated, it’s just there.

In the end, death isn’t a Bayesian probability, it’s a certainty, for all of us. The difference, in Bayesian theory, must be the belief we bring to our personal calculations of the probability of the event.