A blog post by Dr James Rákóczi, Research Assistant
On Wednesday 19th April 2023, the Understanding and Reimagining Sleep and Its Disorders project hosted its final online workshop in its programme of public engagement events for people experiencing difficulties with sleep associated with ageing, parenting, and/or the menopause.
The workshop was hosted by Project Lead, cultural theorist Dr Diletta De Cristofaro, and Dr Greg Elder, a sleep researcher at Northumbria University. Greg Elder’s research interests are focused on sleep disturbances in neurodegenerative dementia, as well as in healthy ageing more generally, and the workshop was an opportunity for participants to discuss sleep in relation to events and experiences associated with getting older.
Diletta De Cristofaro began the workshop by sharing an excerpt from Paul Auster’s Man in the Dark, a 2008 dystopian novel about an ageing journalist who is reflecting on a second civil war unfolding in present-day USA. The journalist describes his insomnia:
I am alone in the dark, turning the world around in my head as I struggle through another bout of insomnia. […] That’s what I do when sleep refuses to come. I lie in bed and tell myself stories. They might not add up to much, but as long as I’m inside them, they prevent me from thinking about the things I would prefer to forget. Concentration can be a problem, however, and more often than not my mind eventually drifts away from the story I’m trying to tell to the things I don’t want to think about. There’s nothing to be done.
Paul Auster, Man in the Dark (2008)
Diletta initially invited workshop participants to share their impressions of the passage itself. I was struck by how the excerpt instead instituted a space for participants to offer their own experiences in turn – of sleeping or, at least, of lying in bed trying to sleep.
Many participants used this time to reflect on the tools they had developed to cope with sleep difficulties. Some of these will be familiar to readers: Epsom salts, lavender, camomile tea, writing problems down, thinking of nice things. Others disclosed a movingly complex relationship to sleep management itself, how sleep difficulties commingled with other illnesses, or with other challenging life events. A picture began to emerge about how many of us operate with ambivalent sets of understandings about the role that sleep plays in relation to falling ill, healing, major life transitions, and ageing.
Next, Greg Elder delivered a short talk on sleep and ageing. The principal aim of his talk was to emphasise both the complexity of sleep and underscore the persistent uncertainty at the heart of sleep science research: we still do not know why sleep occurs. What we do know is that sleep is entangled with our physical and mental health, that everyone needs to sleep, and that humans will spend about one-third of our lives asleep.
Greg guided us through various tools available to scientists for measuring sleep. There are subjective methods, requiring sleepers to self-report, such as the use of questionnaires, sleep diaries, or self-reported sleep duration and quality measures.
There are also objective methods such as actigraphy, small devices with accelerometers to measure bodily movement, or more comprehensive forms of polysomnography, which will usually require a sleep patient to come to a sleep lab for overnight monitoring. Participants were pointed towards the wide potential range of recommended sleep duration. The National Sleep Foundation recommends that an older adult (65+) should have 7-8 hours sleep a night but that anything from 5 to 9 hours ‘may be appropriate’.
At this point, a participant asked whether anyone else had heard of the theory that before the rise of industrial labour, patterns of sleep in human beings were divided into two phases of sleep rather than just one (the theory was first proposed, to my knowledge, by historian Roger Ekirch). Greg replied that what such theories demonstrated was the shifting role of sleep over time, both historical time as well as time over an individual’s lifespan. A conversation then followed which explored the ways that sleep and “being horizontal” figured in personal understandings of life, energy, and even health at the cellular level.
This cued up the second half of Greg’s talk, which considered the extent to which recent scientific research is discovering how life events have big effects on individual sleep. He talked us through a 2018 study which indicated that retirement is associated with a decrease in sleep difficulties. As a question prompt for final discussions, participants were asked: has your sleep experience changed in response to any particular events?
In thought-provoking testimony, participants described their own encounters between sleep and health in ageing. For some, sleep could be described in almost spiritual terms, as a liminality, a place where science and magic meet. For others, sleep disclosed the complex relationship we have with listening and responding to our own body – how entangled sleep is with comorbidities and life tragedies in both cause and effect. Greg responded to these conversations by stating how they emphasised for him the need for scientists to investigate more closely the secondary effects of sleep difficulties.
A core goal of all our workshops is to facilitate knowledge-sharing around sleep. The conversations that closed this final workshop testified to the importance of such facilitation work. There was a consensus – drawn from both experience and scientific knowledge – that awareness about sleep needs to be more firmly embedded into clinical practice, both in general practice and specialism. Lived experiences of sleep and ageing should not only inform health policy but co-produce and drive the health research which will improve sleep quality and understanding for all.
Understanding and Reimagining Sleep and Its Disorders is a public engagement project led by Dr Diletta Cristofaro and funded by the Wellcome Trust (Research Enrichment – Public Engagement grant). Hosted by Northumbria University and run in partnership with The Sleep Charity, the project consists in a workshop series, an online art exhibition, and resources.
