Article

Ageing

Care

Change

Death & life

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

Review

Culture

Music

Politics

25 July 2025

6 min read

As the congregation gathers Bruce Springsteen leans hard into hope

Chords of confrontation and communion

Elizabeth Wainwright

Elizabeth Wainwright is a writer, coach and walking guide. She's a former district councillor and has a background in international development.

Bruce Springsteen crouches down and holds a hand out to a sea of outstretched hands

Springsteen plays Manchester.

Brucespringsteen.net.

I finally got to experience a Bruce Springsteen concert recently. Which is to say, for three hours, I touched a land of hope and dreams.

We walked along a canal to get to the arena – my husband, my father-in-law, and me –Manchester shimmered with the arrival of summer, and light bounced off red brick and still water. We neared the arena and the air felt dense with anticipation. T Between us we carried heartbreaks, elections, hopes, failures, and a collective return to music that had accompanied and clarified it all. We were drawn by loyalty and nostalgia and joy, but also I sensed by a hope that Bruce would meet the moment — the frayed, furious, anxious now — with something that mattered.

We found our seats and gripped our drinks as the lights dimmed. Thousands of people stopped individual conversations, and hushed, and then joined voices into a deep and reverent chant. “Bruuuuuuuce”. To my right, the glow of a screen, the woman holding it sending a text – “yes babe, 1pm, lovely” – and it seemed incongruent and true. In the tension before the release, in the dark before the light, we hold our breath even as the ordinary carries on. The ordinary carries on even as the world fractures and glows. The ordinary is what Bruce often sings of, it is one reason why fans feel heard and seen by him. That night though, all the ordinaries he sang of formed something extraordinary.

Then there was light, and Bruce walked slowly from the side to the front of the stage, his guitar suspended across his body, his face a relaxed, broad smile, his bandmates and companions beside and behind him. Then there was music. No videos, no pyrotechnics; just old songs that felt as if they existed for the now. My City of Ruins, Death to My Hometown, Land of Hope and Dreams, The Promised Land. The song Long Walk Home was introduced as a “prayer to my country”. It is a country that he embodies, despairs of, and loves. He sings of his home with fury, sorrow, tenderness, and love.

Riffs and rhythms that were decades old were being made urgent again. Springsteen’s music holds both grit and glory, and hard-won joys leave space for sorrow. I write this and lines by Mary Oliver come to mind: “We shake with joy, we shake with grief / what a time they have these two / housed as they are in the same body.” What a time they had, joy and grief, that night with Bruce.

The evening unfolded not as spectacle but as liturgy; all of us involved in something like devotion – in part to Bruce, but also to moral clarity, to the power of poetry, to the promise of who we could be. At times the crowd seemed silent, ushered into something deeper – not entertainment or escapism, but something like confrontation and communion. We were being offered the joy of music and memory, but also an opportunity to reckon with who we are.

Between songs, Bruce spoke. He apparently rarely does so in his gigs. His voice slowed and deepened – not chit chat, not to entertain, but to bear witness and stand defiant and call us to the best versions of ourselves. “I’ve spent my life singing about where we’ve succeeded and come up short in pursuit of our civic values,” he said. “I just felt that was my job.” He proceeded to describe how those values are being torn apart, and why they matter. The crowd roared. He was making civic values shine, speaking about them with urgency. He acknowledged both the dream and the failure, but still he believes in the promised land and he asks us to as well. Before he belted out Rainmaker, he said, “when conditions in a country are right for a demagogue, you can bet one will show up.” He spoke of America, and really of the world – what it is, what it is becoming. His honesty and poetic rage situated us, then became a map for how to keep going.

We can be glad to be alive even while we are honest about sorrow, injustice, broken politics, fractured families, and tired hearts.

I found myself wondering: why is it that Bruce can sing and speak about justice, warped politics, and who we are becoming, and be met with cheers, while so many churches avoid doing so, preferring instead to whisper in neutral tones while the world burns? That night, I stood in a crowd of thousands and I heard a kind of moral clarity that orientates the soul and made me cry. It wasn’t partisan, it was human. Why can it feel riskier to speak specifically and prophetically in a sermon than in a stadium? I wonder if it’s because Springsteen has always rooted his politics in people’s real lives – in work, family, grief, memory. He doesn’t gesture toward abstract ideologies for fear of alienating people, or in the hope of retaining fans: he tells stories and gives names to problems and injustices, singing about crooked institutions, boarded-up factories, buses that never come, lovers who don’t come back.

The evening felt, for me, like the kind of church I long for and sometimes touch: no tidy answers, no insincere lyrics, no vague calls for justice, but rather honesty and specificity and the chance to stand alongside strangers and feel something challenging, beautiful, true.

I scribbled a question as the music soared: can a chord be mystical? Because that’s how it felt. As if there are progressions – minor then major, dissonance into harmony – that can reach past language and speak directly to the part of us that longs for love more than cynicism, to the part of us that still dares to hope even when there is very little obvious reason to do so, to the part of us wondering how to be truly alive.

Near the end, Bruce quoted the American writer James Baldwin:

“In this world, there isn’t enough humanity as one would hope. But there’s enough.”

There’s enough. It was a small phrase but it hung in the air like incense. For Bruce, there is enough humanity to keep singing for, and about. Now, he seemed to ask the crowd, what will you do with that enoughness, with that humanity?

In the final stretch, Bruce leaned hard into hope with songs like The Rising and Born to Run. The energy in the room felt like resistance – not against something, but for something. He didn’t pretend everything’s fine, but he sang anyway. “It ain’t no sin to be glad you’re alive.”

We can be glad to be alive even while we are honest about sorrow, injustice, broken politics, fractured families, and tired hearts. Gladness is being asked to stand its ground now, and to do something with our improbable aliveness. For the final song, Bruce played Bob Dylan’s Chimes of Freedom. It is a song about lightning and exiles and freedom, about the trembling of the soul and about a sky that “cracked its poems in naked wonder.” He sang it slowly, tenderly, like a prayer – which can also be a trembling of the soul, a song of naked wonder. Perhaps he prayed to God, perhaps to some other sacred thing: our better angels, or the fragile hope of who we might yet become.

In a BBC documentary about Bruce Springsteen’s history with the UK, someone says “there’s something in Bruce fans, you know you can implicitly trust them.” As we filed out of the arena, it felt like 25,000 of us briefly knew each other, trusted each other, could take on the world together. Perhaps we just had.

Soon it was just me, my husband, my father-in-law, and the silent dark canal as we walked back into the night. We were tired, we were awake. I thought of Bruce’s belief in the promised land, and of Baldwin’s line: there’s not enough humanity, but there’s enough. These are beliefs that can feel risky. So can belief in God. But enough is plenty. Enough can turn up the volume and let the spirit be our guide. With 25,000 other people, I’d turned that volume up and I could hear the spirit defiant, unifying, guiding. It is – has always been – time to go and sing of it, despite everything.