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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24 May 2024

7 min read

Why do people come into your life?

The meaning behind those chance encounters.

Emerson Csorba

Emerson writes on geopolitics. He is also a business executive and holds a doctorate in theology.

In a coffee shop, people sit around a table, one holds their hands up in surprise.

Coffee in Madison, USA.

Kayle Kaupanger via Unsplash.

You are sitting in a local coffee shop and the person sitting next to you strikes up a conversation. This stranger happens to work in the sector you wish to enter. They make a valuable introduction, this leading to further conversations, an interview, a job, and in time, the beginning of a career. Or, to take another example, you are a lone parent working in a local supermarket. A work colleague happens to know someone hiring at a local family business. An introduction is made to a person hiring for a role in a profitable company nearby and, before long, the recent supermarket clerk is in an environment much more conducive to supporting a family. These connections emerged entirely out of the blue, yet opened life paths in line with what the two individuals in question had for long been searching.

Why do certain people come into our lives, seemingly out of nowhere? In his paper ‘The psychology of chance encounters and life paths’, the celebrated Canadian psychologist Albert Bandura writes that some of the most important determinants of life paths occur through the most trivial of circumstances. These chance encounters can send individuals’ lives in positive or negative directions, based on the values and skills of the person being connected, the openness or closedness of the networks into which the person enters and of course, the intentions of the person with whom a connection occurs.

To illustrate his meditation on chance encounters, Bandura shares the story of a weary graduate student who ends his research early one afternoon in favour of a round of golf with a friend. The golfing duo encounter two women playing on the same course, one of whom eventually becomes the graduate student’s wife. (This example, it turns out, is a personal one: the graduate student in question is Bandura.) In another example, Ronald Reagan, while President of the Screen Actors Guild, is contacted by the actress Nancy Davis, who is concerned that another ‘Nancy Davis’ on a government list of potential Communist sympathizers at the height of McCarthyism might tarnish her reputation and acting career. The are smitten with each other, later marry, and form what becomes one of the most dynamic President and First Lady duos in American political history.

The recently inaugurated Chancellor of Durham University and renowned Russian politics and national security expert, Dr Fiona Hill, provides us with a more contemporary view into chance encounters. In her book There is Nothing for You Here, Dr Hill coins the term ‘infrastructure of opportunity’ to describe the networks that can help propel motivated persons even if living in what she terms ‘opportunity deserts.’ Dr Hill describes the ‘Family members, friends, schoolteachers, university professors and administrators, and professional mentors [who] helped me find scholarships and jobs and generally pointed me in the right direction’.

One such individual is a teacher, Dr Marshall, who encourages her to apply to the University of St Andrews. The local MP Derek Foster follows up regularly to see how Dr Hill is progressing in her applications. And the Durham Miners Association, long-known for its support of miners’ and their families in self-governance and lifelong learning, provide the needed travel stipend for the County Durham student to make an initial study trip to Russia. It is as if these select individuals reached into Dr Hill’s life, pulling her onto new paths as part of the gradual forming of her vocation. Dr Hill’s interest in Russia was clear, but a community of individuals laid new paths one brick at a time.

Individuals with these types of personal networks, in whatever the setting, receive better information faster than their peers

It is possible to see the development of a personal network in utilitarian terms, in which an individual sets out to construct a network rich in useful contacts. The American sociologist Ron Burt finds in his pioneering work into social network analysis that the most effective networks are ‘structurally autonomous,’ in which a person has many contacts across different ‘social worlds,’ though with few if any of these contacts across social worlds knowing each other (it is important alongside this branching-out into different contacts that a person coordinates their own close contacts effectively, so that they cannot easily be replaced should this be attempted). A social world may be a particular political party, company, church, or community (each its own cluster in which most members know each other) – the point of a structurally autonomous network is that a single person branches into a variety of these.

The advantages of a structurally autonomous network are material. Individuals with these types of personal networks, in whatever the setting, receive better information faster than their peers. They can share (or not share) information in ways that provide them with tangible benefits. Burt finds that individuals with structurally autonomous networks tend to be paid more, promoted faster and receive better performance reviews than those without these kinds of networks. In Burt’s work, it is the individual that goes out of their own way to actively construct a network conducive to new opportunities. In other words, this is networking borne out of strategic self-interest.

Ellul... contrasts an ‘anxious self-centeredness’ with a ‘manner of being’ that ‘can light up relations as lightning does the night.’

But what are we to make of the individuals that come into our lives, often unexpectedly, as part of a more gradual structuring of a vocation or even life? On one hand, Dr Hill’s energy, proactiveness and palpable interest in Russia animated her, preparing her for encounters with figures such as Dr Marshall, Derek Foster and Durham Miners’ Association members. On the other hand, the encounters with these individuals were unplanned. They occurred seemingly out of nowhere, much like Bandura’s encounter with his wife-to-be, or the inaugural meeting between Ronald Reagan and Nancy Davis.

We can take a less utilitarian, and more re-enchanting view in reflecting on why it is that certain people come into our lives. The former sees the individual at the centre of all networking, actively if not relentlessly searching for valuable new contacts in the pursuit of opportunity and incremental advantage. The other sees the individual maintain agency while nevertheless remaining open to the unexpected offering by God of connections branching into new social worlds. These offerings are borne out of considerable prior deliberation, ongoing practice preparing the individual for meetings they never envisaged.

This openness to the offering of certain contacts by God follows on a prior faith in the constant working of God behind the scenes, introducing the right people into our lives at just the right time. These individuals renew us, helping to light up the various paths we walk as part of our worldly vocations. The French sociologist and theologian Jacques Ellul touches on this in his book The Ethics of Freedom, in which he contrasts an ‘anxious self-centeredness’ with a ‘manner of being’ that ‘can light up relations as lightning does the night.’ In the self-centered case, ‘I become the unique central, and essential person who lies behind everything. Only my destiny concerns me. For me I am the central thing in the world. We thus see the dawn of pride, of egoism, and also of worry and anxiety.’ This is the mindset of the avid networker making strategic connections to fulfill whatever they believe is their destiny.

If we pay careful attention to the unseen within our lives, remaining open to the guidance of the Spirit, then the entering of persons into our lives can re-enchant us.

The alternative is an attitude of service, in which we see ourselves (and each other) as what Ellul terms mediators or vicariates for Jesus in living-out the victory he won for us in his resurrection. For Ellul, Jesus’ resurrection is victory in the war-like effort against evil, a victory which is followed by a ‘mop-up exercise.’ In this mop-up exercise, we nevertheless continue to resist evil by approximating the Kingdom of God on Earth. This approach transforms our thinking about networks, encouraging us to see the entering of new people into our lives as opportunities for mutual service, these encounters ‘lighting up the night.’ We must still live in a world of necessities and determinations – grappling with often adverse circumstances and with evil – but with the capacity to light up the world through personal encounter.

Indeed, the mediators or vicariates described by Ellul renew us, lighting us up as we discern our respective vocations in service of God. Here, Burt’s structurally autonomous network is not a mere branching into new social worlds as part of the gleaning of useful information for strategic advantage, but rather a series of encounters with diverse individuals who guid us individually and collectively in the formation of our vocations. Bandura’s chance encounters become not mere serendipitous events but rather offerings from God, strengthening us as we strive to promote the good – while resisting evil forces – in whatever we do.

If we pay careful attention to the unseen within our lives, remaining open to the guidance of the Spirit, then the entering of persons into our lives can re-enchant us. Yes, our individual agency puts us in a position to meet new people. But these encounters are not merely the products of individual effort; they are offerings by God to renew and direct us in our respective pilgrimages with Christ.