Article by Kathryn Butler
A loved one drifting through the shadows of dementia clutches your wrist and implores you to find her husband. She no longer recognizes you, or remembers the laughter and tenderness you’ve shared. She can’t comprehend the steady erosion of her memories, the parts of herself that have crumbled away.
And she doesn’t remember that the husband she adores died decades ago.
What should you say? The last time she heard the truth, she howled and cried, reliving her grief as if for the first time. Then, after an hour of sobbing, she forgot the entire conversation and asked for her husband again.
As she searches your face now, should you tell her the truth and watch the agony wash over her? Or should you spare her the pain and fib that he’s gone out to the store?
Dignity or Happiness?
Such heartbreaking dilemmas inspired a recent article in The New Yorker by award-winning writer Larissa MacFarquar. In her challenging piece, MacFarquar explores the practice of “therapeutic lying,” a controversial approach in dementia care that favors deception over dragging people discombobulated and frightened into a reality they can’t understand.
MacFarquar guides us through memory care centers that feature 1930s décor, fake bus stops, and artificial simulations of the beach, all intended to mirror the realities of people locked within their distant memories. Proponents of such simulated environments argue that familiar details, even if fabricated, comfort dementia sufferers, and soothe the confusion and agitation that arise when their sharpest memories don’t align with their surroundings. Critics question the impact of systematic deception on the hearts and minds of caregivers and dementia sufferers alike.
Throughout her sensitive investigation, MacFarquar posits a quandary: Should we be blisteringly honest with dementia sufferers in the name of dignity and truth, even if the facts devastate them? Or should we lie and collude with their delusions, diminishing their personhood, but keeping them blissfully unaware? “What is more important,” she asks, “dignity or happiness?”
MacFarquar’s question reflects deep empathy for people with dementia and captures the agitation, fear, and confusion that so often afflict them. But it also presupposes stark dichotomies between dignity and happiness, truth and compassion. The question strands caregivers between two unnerving and opposed choices, neither of which seems to wholly manifest love for our neighbor (Matt. 22:39).
The gospel offers an alternative approach.
Loving a Person
Personhood doesn’t decay with our cognitive abilities, but resides in our immutable worth as image bearers of God (Gen. 1:26), a value no disease or calamity can degrade. And the central tenet in care for anyone, stricken with dementia or not, should be love, as God loves us in Christ (Mark 12:30–31; John 3:16; 13:34–35). In Christ, dignity and compassion unfurl as branches of the same vine, each a vital offshoot.
Christian love doesn’t subscribe to blanket policies of harsh fact or rampant falsehood, but rather seeks to build “others up according to their needs” (Eph. 4:29). It views each person as Christ sees him: cherished, unique in the world, worthy of time and sacrifice, with a specific role in God’s story.
Artificial environments with fake bus stops hardly embody this love. Such prescribed, imposed realities ignore the unique stories, memories, and experiences that enrich a life and the varied needs each person harbors in a given moment. Systematic deception discounts the fluctuating course of dementia, when moments of lucidity break through the fog, and when tactics that soothe in one moment can agitate in the next.
According to the U.K.’s Mental Health Foundation, this neglect for individual experience can actually worsen distress and confusion among dementia sufferers. Fabricated environments, the Foundation argues, thrust people into out-of-context scenarios that don’t always align with their own memories and realities.
The resulting disconnect can deepen anxiety among dementia sufferers, and even more concerning, erode crucial relationships. As the foundation reports, “A person living with dementia may start to feel suspicious and lose trust in one or more of their carers if the responses/interactions are inconsistent from one carer to the next, or the body language of the carer suggests something is ‘not quite right.’”
Those with dementia themselves echo these concerns. In one study, people with mild dementia described lying, even if well-intended, as “patronizing” or “demeaning,” and predicted that knowing they were lied to would upset them.
They described their distress as especially profound if the lying occurred within a close, trusting relationship. Such comments warn us that if we routinely lie to those with dementia, even out of compassion, we risk fracturing the fragile bonds tying them to others.
Speaking Truth in Love
None of these dangers should surprise us, given the high standard of truth the Bible upholds (Lev. 19:11; Mark 12:14). But when a woman with severe dementia, for whom the last shreds of working memory have vanished, weeps for her lost husband, should we bluntly retort that her beloved has died?
When we force her into a painful reality she can no longer decipher, do we really embrace her as a unique child of God? Are we speaking the truth in love in such moments, and building her up according to her needs? (Eph. 4:15).
As Sinclair Ferguson so eloquently states, “Truth is always set in the context of love because it is never only a matter of speech and words, but of spirit and motive.” Guiding our loved ones according a Christian ethic requires that we look beyond the words, sift past the factual inaccuracies, and discern the emotions and deep needs driving them.
We must empathize with sufferers, enter their perspective, and walk with them—either toward clarity, or toward calm and comfort.
For those with mild dementia, who understand their cognitive decline and whose false realities upset them, gentle reorientation may usher them back to awareness. Such redirection need not unfold in cold, callous terms, but can take the form of coming alongside him or her: holding a hand, referring back to points in time, or reviewing a photo album until the dwindling memories sharpen into focus. In remembering together, the encounter evolves into a partnership, rather than a corrective measure.
In advanced dementia, however, people can no longer comprehend reality, and demanding they do so risks crushing them with anguish. To respond compassionately, and to acknowledge their dignity in Christ, requires us to enter their world, and to see what they see. Their attempts to comprehend and to communicate must be taken seriously, and respected, just as for anyone else.
“Understanding the world they are experiencing does not mean we have to lie about it,” says Dr. John Dunlop, longtime geriatrician and author of the poignant and informative book Finding Grace in the Face of Dementia. “When a patient is asking for and grieving a dead parent, we need to ask ourselves, ‘What is it they are looking for?’ It may well be love and security. We can respond by hugging them and saying, ‘I love you and will take care of you, and I know you love your mom and dad.’”
Kathy Lind, a nurse practitioner with 25 years of experience in geriatrics, agrees that the chief concern in dementia care is neither fact nor fiction, but viewing each person individually, beloved by God, with unique needs in the moment.
“God is present all the time,” she says. “He is present to the patient with dementia who thinks in the past, and to me who is in the present, both on different timelines. . . . Usually, meeting [people with dementia] where they are and responding to the emotion of their distress, is enough to diffuse the anxiety, and I believe we have really communicated.”
Dunlop lived out this principle when his mother, her mind clouded with dementia, repeatedly mistook him for his father. Rather than reply with, “I’m not Dad,” or pretend to be his father, Dunlop learned to respond with, “Lois, I love you.”
His answer emphasized neither truth, nor fiction, but rather acknowledged his mother’s deepest need in that moment—to receive warmth and affection from someone she loved.
Although the ravages of dementia may chisel away memories, stories of who we are remain. Emotions remain. And these lingering joys can anchor those lost in the past. “Despite their confusion about the present,” geriatric psychologist Benjamin Mast writes, “people can continue to find themselves and reconnect to their faith by rehearsing their story with people who love and care for them. . . . We should try to interact in a way that draws upon their life story, their well-worn behavioral patterns, and those aspects of life that are flavored with emotion.”
Dignity and Compassion
We know that when Christ returns, the synapses of the dementia-stricken mind will be repaired. The brain will heal, the present will snap into relief, and the memories will take their proper place. In the interim, those struggling with dementia need us to reflect their personhood as eternal, not dependent on remembering or forgetting, fact or deception.
They need our respect and love, through care that presumes no dichotomies between dignity and compassion, but rather views each individual as worthy of both.
When we embrace others in such love, we point to the greatest truth of all, to the one whose power and mercy far surpass the jumbled workings of our feeble minds. We point to the one who gave his life for us and who makes all things new: the broken bodies, the sinful hearts, but also the forgotten names and distorted memories, the glimmers of the past tangled with the present.
About the Author: Kathryn Butler (MD, Columbia University College of Physicians and Surgeons) is a trauma and critical care surgeon who recently left clinical practice to homeschool her children. She has written for Desiring God and Christianity Today, and her book on end-of-life care through a Christian lens, Between Life and Death, releases in 2019 (Crossway). She blogs at Oceans Rise.