While the prospect of entering old age, say beginning when we hit seventy, comes with some serenity, so too does it come with fear. Those of this age group have seen the ravages and indignities that could befall themselves having witnessed the experiences of their families and friends, as well as their exposures to cultural and social representations (movies, novels, art, TikTok, Facebook). Their fear ranges from mild concern to outright panic, and their reactions range correspondingly. Those with mild to moderate fear might take up exercising or some brain work, see their doctors regularly, and adopt wearables. Those in utter panic will consider much more drastic actions. In all cases, the reactions to these fears boil down to fighting destiny. 

Lionel Shriver, in her novel, Should We Stay or Should We Go, takes on the case of the panicked, and imagines what they might be willing to do to avoid the horrors that can attend old age and how their actions could turn out. She does this through the story of Cyril and Kay Wilkinson.  

The Pact 

Cyril Wilkinson and his wife Kay make a pact. On Kay’s eightieth birthday, when Cyril is already eighty-one, they will commit suicide together. Cyril, a physician in the British National Health Service (NHS) secured a supply of secobarbital as the means to their ends. It was 1991. They have planned well ahead; another twenty-nine years will pass before Kay’s eightieth in 2020. 

Motivating the pact was the death of Kay’s father after “a good four years of steady deterioration, followed by a solid ten of nothing but degradation” from dementia. (p. 7) Kay recalls “how he was physically so unpleasant,..managing the nappies alone was such a trial, because he fought and kicked a great deal, and sometimes, which was mortifying, got a soft little erection—honestly,  my own father.” (pp. 2-3) Then “the chasing and corralling and undressing…I was halfway between a daughter and a sheepdog. And in between these and many like events, pictures of Kay’s father kept popping up in her head, such as one showing him “naked below the waist, purple with rage, and covered in feces.” (p. 9) 

They had just arrived home from his funeral service and were reflecting on what they had been through. At one point, Cyril says, “Your father frankly made me suicidal—or homicidal—or both. Half an hour in his presence passed like a mini ice age,” and then promises Kay, “I will do almost anything to keep the two of us from acceding to such a fate.” (p. 12) Kay is dubious. 

That’s what everyone says…Everyone looks at what happens to old people and vows that it will never happen to them…Somehow they’ll do something so their aging will proceed with dignity…Everyone thinks they have too much self-respect to allow a stranger to wash their private parts…Then it turns out that, lo and behold, they’re exactly like everyone else! And they fall apart like everyone else, and finish out their miserable end of their lives like everyone else. (pp. 12-13) 

Cyril counters, “in order to retain agency over your own end of life, you have to be willing to give up some small portion of it that’s not particularly rubbish.” (p. 31) But, he admits the plan amounts to “placing a high-stakes wager.” (p. 32) Kay dithers over the next few months, but then her mother begins showing signs of dementia; “I’m all in,” she tells Cyril. (p. 17) 

The Pact Wobbles 

Cyril and Kay proceed through the subsequent twenty-nine years, with Kay raising their three children, retiring, finding new work and passions; Cyril going on and on about politics, the NHS, old people; and both watching their remaining parents pass on, traveling to far-flung locations, becoming grandparents, aging. Then the day arrives; happy birthday, Kay? 

The four years preceding Kay’s eightieth birthday overlap both the decision of the United Kingdom (UK) to leave the European Union (“Brexit”) and the Covid-19 pandemic. Thus, during the time Cyril and Kay are beginning to wonder whether they will actually leave or remain on Earth, the UK is deciding whether to leave or remain in the European Union. And while Cyril and Kay are seemingly willing to die rather than fight the ravages of old age, millions of people are willing to fight the ravages of Covid-19 rather than die. These juxtapositions pop up often giving the Wilkinsons’ decision added poignancy, and play a part in their newly manifesting doubts about the pact as the established date of its execution nears.  

At this juncture, Shriver conjures twelve different endings that still take the form of high-stake wagers. Through these alternative paths, we see if the wagers are well placed. We also gain insights on common and contemporary issues concerning aging, as well as on some hypothetical and futuristic possibilities. Among them are these: 

• The surprises still left between people after more than forty years of marriage 
• The possibility of a person with dementia as happy 
• Whether being sensible and prepared for old age is always rewarding 
• The prospect of outliving enjoyment, purpose, or interest in life 
• What life might be like when a drug reverses aging and makes elderly people twenty-five years old again, forever 
• Elder abuse within an institution and within a family 
• The adventurousness and desperation people approaching old age can exhibit 

Though each of the alternative endings comprise individual chapters, they are not wholly independent of one another as they each borrow ideas, paragraphs, dialogs, and sentences from the others. Some of them peel off into separate tales. Shriver does not limit these through lines to just those within the book. In one case Shriver samples another of her books, So Much For That, and in another, she riffs on an American in England who bloviates on BBC 4 and in a widely-circulated newspaper, who happens to be Shriver in real life. These interminglings make for more dynamic prose, and add some coherency to all the different alternatives presented. 

Destiny’s Grandparents 

None of the alternative endings stand out as the one they should follow. Shriver, though, offers other ways of accommodating the challenges and frights of approaching old age. Throughout the chapters, and with mostly dialog between Cyril and Kay as they think through their choices and decisions, she puts an emphasis on destiny, risk, and bravery.  

When Kay is arguing against the pact, she tries to impress upon Cyril that destiny has a part in what becomes of them, and that they cannot control all of it. “Our destiny isn’t wholly in our hands. I realize you don’t like that about the world, but there’s an upside: our destiny isn’t wholly our responsibility, either. Or, if we end badly, our fault.” (p. 241) Shriver emphasizes the point by making destiny a component of each alternative path they take. Destiny can’t be completely controlled, so embrace it, or at least accept it, Shriver may be saying.  

As they did with their original plan for Kay’s eightieth, the Wilkinsons would have to wager that the outcomes of any of their alternative paths would be more preferable than the status quo. Kay acknowledges that this reality has been the case throughout their life when she asks Cyril, “every decision we make is a gamble, isn’t it?” (p. 202) So, why not give them a go? 

The pact Cyril and Kay make can seem brave, but Shriver is not having it, and especially not when compared to the bravery needed in old age. “Real bravery and nobility,” Kay tells Cyril, “entail losing everything you love by degrees like everyone else, and taking what comes like everyone else, and dying when you least expect it and when you don’t want to, like everyone else.” (p. 75) “Buck up,” Shriver could have added. 

We should stay: it’s destiny, with risks, be brave, eat your ice cream.  

Should We Stay or Should We Go
HarperCollins, 2021: 266 pages 

Image Credit
Title: The Voyage of Life: Old Age 
Artist: Thomas Cole, 1842 
Source: Obelisk Art History  Public domain 

Attending plays is not always just a passive experience. Through various means playwrights, producers, composers, choreographers, set designers, and others have available to them, they can make plays immersive and interactive for audiences. A good example, among many, is Florian Zeller’s play, The Father. 

The Father is the story of an older man with Alzheimer’s disease (André) and his progression through first living on his own, then living with his daughter (Anne), and finally living in a nursing home. Or, is it? It’s hard to tell, and that is the intention of the playwright, Florian Zeller, who in a 2021 interview with Forbes Magazine,* said his aim was, 

to tell the story from the inside and put the audience in a unique position as though they were going through a labyrinth—questioning everything they’re seeing. It also was a way for me to play with the idea of disorientation because I not only wanted The Father to be a story but also an experience. The experience being what it’s like to lose everything, including your own bearings as a viewer and to be uncertain of what is and isn’t real. It was a way for the audience to experience a slice of dementia.

The director, Doug Hughes, creates the audience experience through an interplay among set designs, lighting effects, repeated scene sequences, and time loops as circumstances for various behaviors like memory loss, paranoia, anger, and lasciviousness. All the scenes take place in one room that serves at different times as André’s flat, Anne’s flat, and André’s nursing home room. The furnishings of the room change based on the supposed setting, but the walls are exactly the same for all of them. In different scenes, André is not always sure where he is, and neither is the audience.  

Early in the play, André hears Anne tell him she’s relocating from Paris to London with her lover, but she is present to him in most of the scenes thereafter and until the end of the play when he’s told by a nurse that Anne had moved to London some time ago. Had she really left Paris and was never actually there in all those other scenes? He wonders and so does the audience. In other scenes, the way characters from the past and present enter and exit distorts time for André, and so while audience members know the linear trajectory of the disease course, they can’t be sure of where they are in that course during a given scene. With the last scene taking place in André’s nursing home room with the same walls seen in his flat and Anne’s flat, the audience can’t be faulted for wondering whether all that came before was just one of André’s hallucinations. 

The Disorienting Is Clarifying

If the play had been staged as the customary audience view of outside looking in, the audience would have merely witnessed the familiar manifestations of Alzheimer’s disease and a familiar progression of events. This view would have afforded a new appreciation for the trauma it causes to those who are not closely acquainted with the symptoms of Alzheimer’s, while those who are familiar with them could possibly achieve a measure of catharsis. Zeller endeavors to do much more by offering a view of Alzheimer’s from the inside looking out and a means to grasp the actual experience of it. He is successful when audience members find themselves working as hard as André is to discern fact from fiction, past from present, and here from there.   

This can be no easy feat for the stage, and no wonder then that the Broadway production team enlisted an “illusion consultant” (Jim Steinmeyer) and a medical advisor (Dr. Randi Diamond). The intimate experiences the actor playing André (Frank Langella) and the director (Doug Hughes) have had with Alzheimer’s disease through family members no doubt contributed to the production’s authenticity as well.  

Zeller doesn’t leave the audience members defenseless in their efforts to orient themselves. He associates André’s grasp of his own situation with the whereabouts of his watch: “I need to know exactly where I am during the day. I’ve always had this watch, you know. If I were to lose it, I’d never recover.” As André’s dementia progresses and his powers of perception weaken, we see fewer objects in Anne’s flat. In the end, Zeller is hoping that confusing and disorienting the audience members will clarify the dementia experience for them.

Notes:
*Dawson A. Florian Zeller takes viewers into the labyrinth of dementia with The Father. Forbes. March 30, 2021.
This essay is based on a live performance of The Father presented by the Manhattan Theater Club at the Samuel J. Friedman Theater in New York City that ran between April and June of 2016. 
Translated from French by Christopher Hampton.
Brain photo:  Processing language, left brain hemisphere (sagittal view). Stephanie Forkel, NatBrainLab. Source: Wellcome Collection
License: Attribution 4.0 International (CC BY 4.0)
Watch photo from Wikicommons images and licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license.

Directed by Anne Kauffman, the play features “Primes,” or holographic simulations of the dead intended for therapeutic use by the living. June Squibb—who, at 96, is making history as the oldest performer to open a Broadway show—astonishes as Marjorie, an impish 85-year-old with dementia using a much younger version of her husband Walter (an uncanny yet tender Christopher Lowell) to regain and retain her memory. Marjorie’s daughter Tess (the incredible Cynthia Nixon) is skeptical and fearful of the technology, whereas Tess’s husband Jon, played by a standout Danny Burstein, is a fan—until an on-the-nose change of heart in the penultimate scene. 

Marjorie Prime’s central flaw is that it favors concepts over dramatic depth. The characters are well-acted but underdeveloped, and almost all they do is talk; the biggest event may be Marjorie urinating herself. Yet, despite its slow pace and formulaic structure, Marjorie Prime is intelligent and poignant. 

Marjorie’s memories are embellished and sanitized for her comfort and convenience. The fallibility of memory is hardly a novel concept, but the Primes enable this reconstructive process and also become a stand-in for genuine connection in the wake of grief, preventing the family from confronting painful realities and repairing their relationships.  

By the time the truth fully surfaces in the unsettling final scene, which makes adroit use of a stage turntable (props to scenic designer Lee Jellinek), there are no humans left to heal. When storytelling is delegated to AI, truth becomes archival rather than relational; however, truth must be witnessed between living people in order to be ethically and therapeutically meaningful.  

Playwright Jordan Harrison’s Primes, like flesh-and-blood clinicians, absorb and co-construct patients’ accounts of self, yet they are disembodied, unfeeling, and ultimately unable to act with compassion, turning dynamic stories into datasets.   

Marjorie Prime, through Feb. 15 at the Helen Hayes Theater in New York; 2st.com/shows/marjorie-prime.  

“Much of healthcare happens in interpersonal moments,” write Maura Spiegel and Danielle Spencer in the first chapter of The Principles and Practice of Narrative Medicine—and machines are good at many things, but participating in a truly interpersonal moment is likely not one of them. Several studies have suggested that models perform worse for underrepresented groups because they are trained on datasets that lack racial, cultural, and linguistic diversity. Additionally, AI may miss subtle emotional cues and fail to interpret tone, context, and metaphors, which, one bioethicist [1] predicts, could “fundamentally alter” how trust is practiced in healthcare. Others [2] have underscored that “AI should be viewed not as a replacement for the physician, but as a partner in delivering empathetic, patient-centered care.” 

However, AI is not wholly bad. For example, a recent systematic review [3] found that applying natural language processing (NLP) to unstructured text in electronic health records (EHRs) can detect signs of cognitive impairment. Some [4] have found solace in text-based simulations with lost loved ones. And perhaps technology should be viewed as a vehicle for strengthening partnerships between clinicians and patients. Designed by Gabriela Gomes, the video game Healing Spaces aims to help those with neurodegenerative diseases connect with their caregivers. It is a multisensory experience: an app with beach and forest scenes, and a box with aromatherapy that smells like pine trees. Healing Spaces may evoke memories or even create new ones between caregiver and patient, unlike the Primes’ hollow curation. 

Healing Spaces also includes sunscreen-scented lotion that caregivers can use to massage the hands of those in their care. Needless to say, holograms and lotion don’t pair well. “You can’t touch a hologram. So there’s something about them looking so much like your loved ones, but not being able to quite achieve intimacy with them,” said Harrison during Marjorie Prime’s Off-Broadway run about a decade ago. “The loneliness can never be quite extinguished, never satisfied, because they’re just pixels.”  

[1] Kerasidou, Angeliki. “Artificial Intelligence and the Ongoing Need for Empathy,  Compassion and Trust in Healthcare.” Bulletin of the World Health Organization, vol. 98, no. 4, 2020, pp. 245-250. pmc.ncbi.nlm.nih.gov/articles/PMC7133472/. 

[2] Ghenimi, Nadirah, et al. “Integrating AI with Narrative-Based Medicine: Enhancing Patient-Centered Care in Primary Practice.” Perspectives in Primary Care, 5 Dec. 2024, info.primarycare.hms.harvard.edu/perspectives/articles/integrating-ai-with-narrative-based-medicine.  

[3] Shankar, Ravi et al. “Natural Language Processing of Electronic Health Records for Early Detection of Cognitive Decline: A Systematic Review.”npj Digital Medicine, vol. 8, no. 1, 2025, p. 133. pubmed.ncbi.nlm.nih.gov/40025194/. 

[4] Fagone, Jason. “The Jessica Simulation: Love and Loss in the Age of A.I.” The San Francisco Chronicle, 23 July 2021, sfchronicle.com/projects/2021/jessica-simulation-artificial-intelligence/. 

Web image from 2nd Street Theater.

What could it be like to have dementia? We can’t know. But the arts can imagine what people with dementia could be going through, and many works have been produced for that purpose. We feature a literary novel (The Wilderness), and a play (The Father) and its movie adaptation, offering sophisticated renderings of dementia for consideration. In the course of our conversation about these works and how they imagine dementia, we include: how an illusionist was part of the creative team in The Father to produce a sense of disorientation among audience members; how the metaphor of “the wilderness” is used in the novel and more broadly in various texts from the beginning of civilization; and how well the psalm used in the novel worked and builds on the place of psalms as texts for understanding how people react when threatened by significant life events.

Featured Content Sources:
• The Wilderness, by Samantha Harvey, Anchor Books, 2009.
• The Father (play), Florian Zeller playwright, Doug Hughes director, Christopher Hampton translator, NYC Broadway 2016 + tour sites, London West End 2015 + tour sites.
• The Father (movie), Florian Zeller screenwriter and director, Christopher Hampton translator, Trademark Films, release date US – 2/26/21, available through many streaming services. 

Links:
Russell Teagarden’s associated blog pieces at According to the Arts: 
• The Wilderness: the novel and literary excerpts compared with biomedical text
• The Father: the play and the movie

Russell Teagarden’s review of The Father (movie) in the journal, The Pharos.
Podcast episode 6, which features dementia related to Parkinson’s disease and expressed through the poetry (sonnets) of Micheal O’Siadhail is here.
Background information on development of Alzheimer’s disease as an obscure and rare disease to a broad categorization of dementia: 
Claudia Chaufan, Brooke Hollister, Jennifer Nazareno, Patrick Fox. Medical ideology as a double-edged sword: The politics of cure and care in the making of Alzheimer’s disease. Soc Sci Med 2012;74:788-795.
Patrick Fox.  From Senility to Alzheimer’s Disease: The Rise of the Alzheimer’s Disease Movement. The Milbank Quarterly 1989; 67:58-102.

Feature image by Margarida CSilva