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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Loneliness

23 June 2023

6 min read

The curse of loneliness and the hope of kindness

The tend-and-befriend response is present in many species, but it reaches a particular level of genius in ours, explains Roger Bretherton.

Roger Bretherton

Roger is a Clinical and Coaching Psychologist.

A person stands in a road under misty street lights.

Atharva Tulsi on Unsplash

Loneliness kills. I’ve known that for a while. It dawned on me when, as an undergraduate, I first read the anthropological studies of the so-called ‘voodoo death curse’. An admittedly politically incorrect name for a horrifying phenomenon that has haunted me ever since. The studies, reported in the early twentieth century, attempted to account for the highly effective way in which shaman in tribal cultures were able to pronounce death on aberrant members of their community. Often within days of coming under the curse, the hexed individual was dead. It looked like magic.

Psychologists studying anxiety became interested in this phenomenon as an illustration of the connection between social stress and physical health. On closer examination, they noted that those on the receiving end of a death curse, not only came under the opprobrium of a powerful spiritual authority but were consequently entirely isolated from the community that gave them their identity. The moment the curse was decreed they became a non-person. They ceased to exist in the eyes of the collective. They became a ghoul, a wraith, an abomination to their people. They experienced a social exclusion so absolute and catastrophic that the stress of it killed them. Physical death swiftly followed social death.

When we fall foul of the charismatic leader of a workplace... we may for a moment shiver in the chill breeze of the death curse.

But the death curse is not confined to stone age tribes and agrarian collectives. It is a ubiquitous artefact of human social life. In subtly disguised form it continues to stalk the industrialised societies of the West. We see it in any social situation that terminally frustrates our hardwired biological need to belong. When we are cast out of employment through redundancy, retirement, or sickness. When a social faux pas leaves us persona non grata. When our social media presence is more of a toenail than a footprint. When we fall foul of the charismatic leader of a workplace, a neighbourhood, a family, a church. We may for a moment shiver in the chill breeze of the death curse. We wonder briefly if the silence and the cold shoulders will kill us.

We don’t often think about the all-too evident connection between belonging, stress and health- but we should, because social connectedness is the primary way we as a species have made it this far. Most of us are familiar with the physiological responses to acute stress. There are only a few of them. It’s like a multiple choice test, take your pick: a) fight, b) flight, c) freeze, d) faint, or e) some bespoke combo of all of the above. We probably also have some recognition that those of us living in information economies tend to spend too much time in these stressed states of mind. They are designed for short-term threats (like predators), not long-term projects and serial deadlines. The cortisol coursing through our veins designed to deliver us from danger now stops us sleeping at night, and lurks behind all the major killers of our culture: cancer, heart disease, and depression.

But before we get to all that stressed-out running and punching and standing still like startled rabbits, there is a more common everyday way that human beings deal with stress. Our primary way of navigating a challenging and threatening world is our equally hardwired ability to reach out to others- the social engagement system. This tend-and-befriend response is present in many species, but it reaches a particular level of genius in ours. Our capacity to form groups that can coordinate action through a sense of unified purpose is what allowed our ancestors to take down woolly mammoths and survive ice ages. Our principal strength comes not from our ability to make fists, but to join hands.

To fall out of connection with others is an existential threat.

No wonder then, given our history as an eminently social species, that loneliness- the perceived shortfall between desired and actual social contact- is experienced as a menace to our survival. It once was, and still is. To fall out of connection with others is an existential threat. Clinical research has been reporting for decades that social support, or rather the lack of it, predicts and maintains pretty much every form of psychological distress we can bring to mind. In a small-scale way I repeat that finding with my own students every year. We annually distribute a 19-item well-being survey to several hundred university students. Most of it asks about the good stuff, happiness, quality of relationships, sense of purpose and so on. But one question asks them to rate, simply on a 1-10 scale, how lonely they are. Every time we run it on campus, this single lonely question predicts levels of depression, anxiety and stress, better than any other demographic.

So, it is good that loneliness is back in the news. Only last month the US Surgeon General, Vivek Murthy, issued a report on the devastating health impact of loneliness. It affects a large proportion of the population- he cites 50% in the US, but UK estimates tend to be more conservative. It is apparently as damaging to our health as smoking 15 cigarettes a day, and twice as risky as downing six alcoholic drinks daily. Public health officials are partial to measuring mortality in fags and booze. But Vivek Murthy did something very un-like a public health official: he spoke about his own loneliness. How his very success in office had severed ties with friends and family, leaving him isolated, lonely and having to learn to re-connect. He proposes six pillars for addressing the societal scourge of loneliness, but as yet no government funding has been allocated to the initiative.

It is when we give to others that we know we are known- we matter.

When the experts are asked what we can do about loneliness they tend to advocate a multi-level approach. As individuals, we should Get Out. If we are lonely there are things we can do about it. Volunteering, exercise, singing, therapy, reconnecting with old friends, Counter-intuitively, we are more likely to benefit from activities in which we give something, in which we care or contribute. It is when we give to others that we know we are known- we matter.

As groups we should Look Out. Not everybody is able to overcome the barriers to social contact. Some people through physical or mental disability need others to look out for them. I witnessed a heart-warming example of this recently. There is a notorious character who lives locally. He dresses in black, has wild hair, walks with a limp, and speaks in grunts. He’s harmless, but he scares children. I don’t know what trauma or substance reduced him to this state, but he staggers past us twice a day on the way to his allotment. A few weeks ago thieves broke into his shed and stole all his gardening tools. He was pitifully distressed. But within hours the entire neighbourhood had mobilised through social media, and equipped him with every trowel, fork and hoe, that could be spared. I can’t help feeling that there is something in us as people that wants to act kindly like this, and cultivating this instinct gives me hope that we as a society can beat back the spectre of loneliness.

Loneliness it seems may not be just a bug in our software, it may be encoded in our cultural firmware- part of its operating system.

Which leads us to the third level of action, we need to Sort Out the dehumanising trends of our culture that inevitably generate and enable the pandemic of loneliness. As Mother Teresa famously observed, loneliness is the price we pay for wealth in the West, it is our true poverty. There may be something inspiring about the ruggedly individualistic, materialistically motivated, hyper-competitive, ideal of success that presides over our culture. But the studies of psychological wellbeing unanimously conclude that every one of those motivating values leads to misery, distrust and isolation. Loneliness it seems may not be just a bug in our software, it may be encoded in our cultural firmware- part of its operating system. Perhaps that is why most government-led attempts to alleviate the problem (in the UK and US at least) smack of tokenism. As the old organisational mantra goes: our social system is perfectly designed to bring about the outcomes it produces. So, what do we need? Nothing much. Just a completely transformed society. If only there was one of those knocking around, somewhere.