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.

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3 July 2023

5 min read

Equiano: How an ex-captive became the voice of abolition

How did a formerly enslaved person think about their faith, freedom, and vocation? Luke Bretherton explores the politics and theology of Olaudah Equiano, whose story was central to the abolitionist movement and continues to resonate today.

Luke Bretherton

Luke Bretherton is a Professor of Moral and Political Theology and senior fellow of the Kenan Institute for Ethics at Duke University in Durham, North Carolina.

Portrait of Olaudah Equiano from the frontispiece of his biography

The most significant political revolution of the modern era was not that of America, France, Haiti, Russia, or China. It was the longer lasting, deeper rooted, and more pervasive revolution that is “humanitarianism.” Rather than a change in one form of political order, it was a revolution of moral sentiment that affects all political orders. The fruit of this revolution is that the acme of moral action is no longer love for a proximate “brother” but love for a remote “other.”

A foundational text in this revolution is Olaudah Equiano’s The Interesting Narrative of the Life of Olaudah Equiano, or Gustavus Vassa, the African. Written by Himself (1789). Equiano, a formerly enslaved person, was a key activist in the movement to abolish slavery. Published on the eve of the Parliamentary enquiry into the slave trade and three months before the French Revolution, his autobiography was hugely popular, running to nine editions and numerous printings during his lifetime.

His autobiography is vital reading because the abolition movement in which he played such a key part is widely understood by historians as foundational to the birth of humanitarianism. It is also seen as providing the template for other, subsequent movements for social justice.

Equiano’s work and its impact needs situating within what is called the Second Great Awakening, a moment of religious fervour on both sides of the Atlantic. Dated as beginning in 1790, the Second Great Awakening represented a huge revival in popular Christianity. Out of it came modern evangelicalism. However, unlike its contemporary expression, the evangelicalism of the late 18th and early 19th century was a key influence on a number of movements for social reform, including the abolition movement.

In his narrative, he portrays himself as the true Christian and the true human. When he encounters the European slave traders on their slave ships, they are the real savages, and despite what they say, they are not Christians.

At the heart of Equiano’s Narrative are two stories of conversion. The first is his conversion to Christianity. The second is his conversion to abolitionism. These two conversions are interrelated. Through his conversion to Christianity, he discovers an understanding of what it means to be human that leads him to see all forms of slavery as wrong. This judgment against slavery includes not just the industrial scale form of slavery driven by the plantation economy, but also what some see as the more benign forms of his own Eboe society in West Africa.

Through his conversion narrative he gains possession of himself, his history, and his people as historical subjects able to speak and act for themselves. He becomes a political actor contributing to and a leading figure within a new political form – the social movement – that contested a dominant feature of the political economy – slavery. Crucially, he refuses and refutes the racialized ways in which Africans are negatively portrayed. Rather than a chattel, he is a Christian and a citizen with a story to tell. He is not merely biology to be exploited. He has a biography. And he is one whose testimony stands as evidence in the case against slavery. In staging this claim he reverses the order of who listens and who speaks – he speaks and English readers listen and take instruction from him.

In his narrative, he portrays himself as the true Christian and the true human. When he encounters the European slave traders on their slave ships, they are the real savages, and despite what they say, they are not Christians. He also represents himself in the text as a new St Paul. He’s an apostle calling others to discover both Christ and their humanity in their encounter with him through reading his story.

Equiano’s is a profound and original work that constantly draws on Biblical frames of reference to both denounce the world as it is and announce a new world. The Bible for him is simultaneously a means of demanding recognition and offering critique.

In the frontispiece of the book he is pictured as holding a Bible which is open at the Book of Acts in the New Testament. Acts chronicles the adventures of the apostles after Christ's death and resurrection. The frontispiece is the key to understanding the story Equiano tells. He is not Odysseus who returns home after many trials and tribulations. Rather, he is St Paul: one who becomes an apostle, taking on a new name and identity in the process. Like St Paul, Equiano suffers whipping, imprisonment (in the hold of a ship), storms, and travels in chains all for the sake of preaching the Gospel. And like St Paul, who ends his journey in Acts in Rome, Equiano’s journey leads him finally to London, the centre of his imperial world. From there he writes an epistle addressed to the churches who are failing to be faithful to the Gospel. In doing so, he appeals, like St Paul, to a universal humanity now available in Christ, in whom “there is neither Jew nor Greek, slave nor free, male and female; for all of you are one in Christ Jesus” (Galatians 3:28).

The most significant political revolution of the modern era was not that of America, France, Haiti, Russia, or China. It was the longer lasting, deeper rooted, and more pervasive revolution that is “humanitarianism.”

There are those who read Equiano as simply a stooge for colonialism and capitalism. Yet they fail to convince. Such readings deny any connection to the abolition movement. And rather than being someone who is reclaiming his voice and agency, they turn him into a faceless and voiceless subject of forces beyond his control.

To dismiss Equiano is to fail to see the truly revolutionary nature of the text he wrote. In his autobiography, Equiano describes the Christian masters who brutally tortured their slaves for the slightest offense, the ubiquitous rape of women, including very young girls, and the theft from slaves who had little or nothing. Alongside and in stark contrast to this brutality, exploitation, and alienation, Equiano narrates an alternative world, one characterized by intimacy and connection. In this world, he becomes friends with women and children, and forms equal partnerships with white men. The vision of freedom he presents does not entail violently taking control of the state (as was the pattern set by the French revolution). That vision of revolution simply changes who is in control of the state and the economy but does not change the basic form and character of relations between people.

The freedom Equiano portrays is neither structural nor economic. Rather, he bears witness to a revolution of intimacy and sentiment. His life story embodies a changed structure of feeling, one where in place of the rape, whipping, chains, fear, disgust, and disdain that rules relations between blacks and whites there is the possibility of mutuality and respect. Equiano’s autobiography continues to reverberate as it calls us to a conversion of our hearts and mind so that we encounter others––no matter who they are or where they come from––as neither objects to exploit nor enemies to be feared but as neighbours in need of care. Such neighbour love may well be a fragile basis for hope in a world of carnage and desolation still living in the after lives of slavery. Nevertheless, it is as revolutionary now as it was in Equiano’s day.