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

Article

Assisted dying

Care

Comment

Politics

7 May 2025

4 min read

Assisted dying is not a medical procedure; it is a social one

Another vote, and an age-related amendment, highlight the complex community of care.

Henna Cundill

Henna is a researcher with the Centre for Autism and Theology at the University of Aberdeen.

Graffiti reads 'I miss me' with u crossed out under the 'mem'

Sidd Inban on Unsplash.

Scottish Parliament’s Assisted Dying bill will go to a stage one vote on Tuesday 13th May, with some amendments having been made in response to public and political consultation. This includes the age of eligibility, originally proposed as 16 years. In the new draft of the bill, those requesting assistance to die must be at least 18.

MSPs have been given a free vote on this bill, which means they can follow their consciences. Clearly, amongst those who support it, there is a hope that raising the age threshold will calm the troubled consciences of some who are threatening to oppose. When asked if this age amendment was a response to weakening support, The Times reports that one “seasoned parliamentarian” (unnamed) agreed, and commented:

“The age thing was always there to be traded, a tactical retreat.”

The callousness of this language chills me. Whilst it is well known that politics is more of an art than a science, there are moments when our parliamentarians literally hold matters of life and death in their hands. How can someone speak of such matters as if they are bargaining chips or military manoeuvres? But my discomfort aside, there is a certain truth in what this unnamed strategist says.

When Liam McArthur MSP was first proposed the bill, he already suggested that the age limit would be a point of debate, accepting that there were “persuasive” arguments for raising it to 18. Fortunately, McArthur’s language choices were more appropriate to the subject matter. “The rationale for opting for 16 was because of that being the age of capacity for making medical decisions,” he said, but at the same time he acknowledged that in other countries where similar assisted dying laws are already in operation, the age limit is typically 18.

McArthur correctly observes that at 16 years old young people are considered legally competent to consent to medical procedures without needing the permission of a parent or guardian. But surely there is a difference, at a fundamental level, between consenting to a medical procedure that is designed to improve or extend one’s life and consenting to a medical procedure that will end it?

Viewed philosophically, it would seem to me that Assisted Dying is actually not a medical procedure at all, but a social one. This claim is best illustrated by considering one of the key arguments given for protecting 16- and 17- year-olds from being allowed to make this decision, which is the risk of coercion. The adolescent brain is highly social; therefore, some argue, a young person might be particularly sensitive to the burden that their terminal illness is placing on loved ones. Or worse, socially motivated young people may be particularly vulnerable to pressure from exhausted care givers, applied subtly and behind closed doors.

Whilst 16- and 17- year-olds are considered to have legal capacity, guidance for medical staff already indicates that under 18s should be strongly advised to seek parent or guardian advice before consenting to any decision that would have major consequences. Nothing gets more major than consenting to die, but sadly, some observe, we cannot be sure that a parent or guardian’s advice in that moment will be always in the young person’s best interests. All of this discussion implies that we know we are not asking young people to make just a medical decision that impacts their own body, but a social one that impacts multiple people in their wider networks.

For me, this further raises the question of why 18 is even considered to be a suitable age threshold. If anything, the more ‘adult’ one gets, the more one realises one’s place in the world is part of a complex web of relationships with friends and family, in which one is not the centre. Typically, the more we grow up, the more we respect our parents, because we begin to learn that other people’s care of us has come at a cost to themselves. This is bound to affect how we feel about needing other people’s care in the case of disabling and degenerative illness. Could it even be argued that the risk of feeling socially pressured to end one’s life early actually increases with age? Indeed, there is as much concern about this bill leaving the elderly vulnerable to coercion as there is for young people, not to mention disabled adults. As MSP Pam Duncan-Glancey (a wheelchair-user) observes, “Many people with disabilities feel that they don’t get the right to live, never mind the right to die.”

There is just a fundamental flawed logic to equating Assisted Dying with a medical procedure; one is about the mode of one’s existence in this world, but the other is about the very fact of it. The more we grow, the more we learn that we exist in communities – communities in which sometimes we are the care giver and sometimes we are the cared for. The legalisation of Assisted Dying will impact our communities in ways which cannot be undone, but none of that is accounted for if Assisted Dying is construed as nothing more than a medical choice.

As our parliamentarians prepare to vote, I pray that they really will listen to their consciences. This is one of those moments when our elected leaders literally hold matters of life and death in their hands. Now is not the time for ‘tactical’ moves that might simply sweep the cared-for off of the table, like so many discarded bargaining chips. As MSPs consider making this very fundamental change to the way our communities in Scotland are constituted, they are not debating over the mode of the cared-for’s existence, they are debating their very right to it.