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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Care

Culture

Mental Health

Trauma

10 November 2025

5 min read

Stillness is not always peace: how wellness and illness intertwine in silence

Stillness invites clinical insight—and a deeper kind of presence

Helen Cowan

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

Celine Dion, stiff-person syndrome sufferer.

Celine Dion.

The Global Wellness Institute defines wellness as the active pursuit of activities, choices and lifestyles that lead to a state of holistic health. It includes rest and rejuvenation, through mindfulness, meditation and sleep. As a care home nurse, I am intrigued by the subject of stillness – for patient and nurse - in the pursuit of wellness, and as a sign of illness.

There’s a lot of stillness in illness - from the dense paralysis that can follow stroke or spinal cord injury, to the subtle weakness or stiffness in an arm that might signal the onset of motor neurone disease. Over half of people with Parkinson’s experience ‘freezing’, feeling as if their feet are momentarily glued to the ground. Freezing is also a feature of stiff-person syndrome – the auto-immune neurological condition powerfully documented by Celine Dion in her film I Am. In so-called stone-man syndrome, muscle tissue is replaced by bone, an immobile ‘second skeleton’.

The stillest still is seen in death itself. I’ve stood still with spouses and sons as their loved ones breathe their last. Alone, I’ve watched the hush between heartbeats until there exists only stillness beside sorrow. It’s a stillness like no other, when breath becomes still air, and the only movement is through a window opened to let air in, and souls out, in time-honoured nursing tradition.

In memory of babies born still, a public education and awareness campaign has been launched in the US. “Stillness is an illness” calls for families and healthcare providers to take seriously altered foetal movement in pregnancy, which is reported by 50 per cent of mothers who experience stillbirth. Stillbirth is a tragedy insufficiently addressed in global agendas, policies, and funded programmes, according to the World Health Organization. Mothers in sub-Saharan Africa and Southern Asia are at highest risk, with nearly 1.5 million stillbirths in these regions in 2021.

Sometimes stillness manifests in more muted ways. When dementia robs the recall of person, place and time, residents no longer lift their head in response to their name, nor appear at their chosen place at the breakfast table in the morning. Television presenter Fiona Phillips describes the late stages of dementia for her mother, when she “spent whole chunks of time just sitting and staring ahead, only able to give out a series of sounds.” In care home nursing, I have brought stillness to an agitated mind. Therapeutic touch has relieved tension; creative activities have reduced restless pacing up and down. Music, movement, and medication can also calm a troubled mind.

In the further pursuit of patient wellness, the nurse may need to be still. The “CAREFUL” observation tool has been developed in nursing homes, in which the nurse sits still and discreetly watches a resident for a period of time, assessing their activities and interactions, working out what brings wellbeing, or ill-being, for that individual; residents in this case being our best teachers. Other times in dementia care, the nurse is still as they patiently wait for a resident to explore, enquiring into self-made mysteries solvable only by themselves, examining everything from door handles to another resident’s buttons; or to slowly finish a meal, their swallow also affected by the disease.

Punctuating any frantic nursing shift are other moments of necessary stillness as the nurse performs intricate procedures, carefully inserting catheters, delicately taking blood from fragile veins, or applying prolonged pressure to stem bleeding caused by a catheter during cardiac stenting. In the operating theatre, the scrub nurse stands still awaiting a surgeon’s call; the “honor walk” or walk of respect is a ceremonial procession in which healthcare staff line the corridor, in silent tribute, as a brain-dead patient is taken to theatre for organ donation.

There’s a different stillness sought in nursing, and elsewhere, which runs very deep. Described by missionary and author Elisabeth Elliot as a “perfect stillness…a great gift”, it is, in her words, “not superficial, a mere absence of fidgeting or talking. It is a deliberate and quiet attentiveness—receptive, alert, ready”. It’s an expectant stillness in which we “put ourselves firmly and determinedly in God’s presence, saying ‘I’m here, Lord. I’m listening’.” Writing for the Christian Medical Fellowship, nurse Sherin describes such a seeking during a stressful shift. “Overwhelmed, I stepped away to find a quiet place. I ended up in a washroom. It wasn’t ideal, but there I cried out to God, asking for courage, peace, patience, and above all, love for that patient.” And her prayer was answered. “That, to me, was the quiet, powerful presence of Christ,” she writes.

Her role model was Jesus himself who often stepped away to be still, to seek spiritual sustenance. Just before he fed the five thousand, Jesus said to his tired and hungry disciples, “Come with me by yourselves to a quiet place and get some rest.” When grieving the execution of John the Baptist, he withdrew by boat privately to a solitary place; and in the hours before his arrest, Jesus withdrew about a stone’s throw from his disciples, knelt down and prayed. An angel from heaven appeared to him, and strengthened him. We too are invited, in the book of Psalms, to “Be still and know God” when hard pressed and weary. Here, the words “be still” derive from the Hebrew rapha which means “to be weak, to let go, to release”, or simply to surrender. It’s a theme repeated in many of the great Christian hymns, hinting at an expectant, sustaining stillness, invoking God’s promise of His presence in that stillness. Little-known hymnwriter Katharina von Schlegel, writing in the eighteenth century, captures it perfectly.

Be still, my soul! the Lord is on your side;
Bear patiently the cross of grief or pain;
Leave to your God to order and provide;
In ev'ry change he faithful will remain.
Be still, my soul! your best, your heav’nly friend
Thru' thorny ways leads to a joyful end.

I’ve sought this stillness, and it’s brought me wellness. It’s the reason why, despite some difficult days, I am a nurse. Still.

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