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

Art

Care

Culture

Mental Health

9 May 2025

5 min read

Mental health: the art that move us from ostracism to empathy

Four current London exhibitions show the move towards compassion.

Susan Gray

Susan is a writer specialising in visual arts and contributes to Art Quarterly, The Tablet, Church Times and Discover Britain.

A painting of a haunted looking old man dressed in an imagined military uniform.

A Man Suffering from Delusion of Military Rank.

Théodore Géricault, Public domain, via Wikimedia Commons.

Portrayals of mental health were revolutionised from the nineteenth century onwards. While previous generations had focused on the ostracism of those suffering mental illness, and the fear their condition aroused in others, modern artists began to focus on the dignity and humanity of sufferers. Four current London exhibitions show this move towards compassion.

On display at the Courtauld’s Goya to Impressionism, Theodore Gericault’s A Man Suffering from Delusion of Military Rank, c.1819 -22, shows the artist’s sensitive response to ‘monomania’, the term coined in the early 1800s for people living with a single delusional obsession. It is thought this painting is part of a series of portraits on fixations including A Child Snatcher, A Kleptomaniac, A Woman Addicted to Gambling and A Woman Suffering from Obsessive Envy, the face of the last rendered in an unsettling green tinge.

The circumstances surrounding the painting of the series remain mysterious. The timing coincides with Romantic painter Gericault completing his most famous work, the monumental The Raft of the Medusa, 1818-19, depicting 15 survivors of a shipwreck, who had been adrift on a makeshift raft, originally containing 147 passengers, from the French frigate Meduse. Gericault’s preparation for the canvas included visiting morgues to check on the colour of decomposing flesh and building a model of the doomed raft. His difficulties in completing the huge work, over 23 feet long, and the possibility some of his close family may have suffered from mental illness, have supported the belief Gericault painted A Man Suffering from Delusion of Military Rank, and related portraits for personal reasons, possibly out of gratitude to the physician who cared for his family. But there is now doubt if Dr Etienne-Jean Georget commissioned the painting, and whether he was chief physician at Saltpetriere asylum in Paris.

Even if a biographical motivation for the series falls down, and there is no way of knowing if the subjects of the portraits were individuals living with mental health conditions, these portraits remain unique in early nineteenth century painting. People deemed at the very margins of society are portrayed in the same manner as the most powerful, in half-length portraits emphasising their dignity and humanity, over their social estrangement and health challenges.

The Raft of the Medusa, Louvre, Paris.

A painting shows a wreck of a rafter holding survivors and corpses.

Van Gogh’s mutilation of his own ear is interwoven into his biography and his art. In The Ward in the Hospital at Arles and The Courtyard of the Hospital at Arles, both 1889, the artist depicted the interior and exterior of the institution where nuns cared for him, during his mental health crisis. The paintings’ significance to his recovery is shown by Van Gogh taking them with him when he moved to another psychiatric facility 25 kilometres away at Saint-Remy-de-Provence.

Blue is the dominant colour of The Ward, permeating the walls, the beamed ceiling, the crucifix and the door underneath it, and several patients. wear dark blue clothing, including the two nursing Sisters at the centre of the scene, whose Order of St Augustine black and white habits, have been realised in darkest blue. Van Gogh described the long ward as ‘the room of those suffering from fever’, most probably referring to patients with mental illness. The painting was reworked during the artist’s admittance at Saint-Remy-de-Provence, with the symbolic empty chair used in other works to represent him and his housemate Paul Gauguin added to the foreground, together figures gathered around a stove. The return to the painting was prompted by reading Dostoevsky’s The House of the Dead, a fictionalised account of the author’s spell in a Siberian prison, and the book’s characters may have provided the inspiration for the huddled men.

The Courtyard of the Hospital at Arles captures the grace of the hospital’s Renaissance building, by depicting the inner courtyard from the vantage point of the first-floor gallery. From this aerial angled viewpoint, the garden’s bright flora, radiating from a central pond, spreads out in all directions. Van Gogh’s description of the scene to his sister Willemien, hints at their Bible reading, clergy childhood: ‘It is therefore a painting full of flowers and springtime greenery. Three dark and sad tree trunks however run through it like snakes…’

Van Gogh’s images of healing were from memory rather than life, and document his own mental health recovery:

‘I can assure you that a few days in hospital were very interesting and one perhaps learns how to live from the sick.’

The Ward, Vincent van Gogh, Public domain, via Wikimedia Commons.

Van Gogh's painting of a mental ward in a hospital

Edvard Munch's Portraits, Evening 1888, shows the artist’s sister Laura, who had been hospitalised for mental illness, on and off, since adolescence. Although Laura is lost in her own world, staring fixedly ahead against a coastal landscape, the affection of the artist for the subject is palpable. Fashionably dressed in straw hat and summer dress, Laura’s dignity anchors the composition. Munch documented his own breakdown after alcohol poisoning in a portrait of Daniel Jacobson. His full-length portrayal of the doctor, arms akimbo, drew the reaction: ‘just look at the picture he has painted of me, it’s stark raving mad.’ Munch’s fascination with the doctor-patient relationship is evident in Lucien Dedichen and Jappe Nilssen, 1925-6, where Dedichen’s looming, purple presence, overshadows the diminutive, seated patient.

Portrait, Evening. Museo Nacional Thyssen-Bornemisza, Madrid.

A painting of a pensive young woman sitting and staring across a lawn.

Mental health and delusion form the wellspring of Grayson Perry’s Delusion’s of Grandeur. The artist responds to the Wallace’s flamboyant rococo collection in the persona of Shirley Smith, a character believing she is the rightful heir of the Wallace Collection. Eighteenth century style ceramics are decorated with outline figures resembling the Simpsons. Perry creates a family tree for Shirley from the Wallace’s miniatures, A Tree in the Landscape where every member has a condition from the American psychiatric guide Diagnostic and Statistical Manual of Mental Disorders.

Grayson Perry, Untitled Drawing, Courtesy the artist and Victoria Miro.

A image of a woman against a detailed red background.

In Alison Watt: From Light at Pitzhanger Manor, the artist’s still lifes of roses, fabrics and death masks responds to the collection of Regency architect Sir John Soane, and the ever-present fragility and complexity of human life and psychological flourishing. “With a rose it is impossible not to be aware of human intervention. Roses are bred, altered outside of nature and given names. In the history of painting the rose can be read as a symbol of beauty, innocence and transience, but also of decline and decay, echoing Soane’s preoccupation with themes of death and memorialisaton.”

With the scientific and medical advances of the nineteenth century, life in all its psychological complexity, could supplant death as artists’ inexhaustible fount of inspiration.

Le Ciel, Alison Watt.

Find out more.

Goya to Impressionism. Masterpieces from the Oskar Reinhart Collection, Courtauld Gallery.
Edvard Munch Portraits, National Portrait Gallery.
Grayson Perry Delusions of Grandeur, Wallace Collection.
Alison Watt From Light, Pitzhanger Manor.

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