Dementia and Grieving

“She must have been resurrected!”

The resident who struggled with dementia recently exclaimed excitedly to a family member, “My sister visited me yesterday and I have not seen her for so long.” This family member confessed to me, “I didn’t know what to say, because her sister died a few years ago.” With the resident’s advancing dementia, she had no memory of her sister’s death.

“What should I say?” the family member asked.

The last time our resident heard the truth of her sister’s death, she sobbed, re-living her grief as if for the first time. Then, after an hour of sobbing, she forgot the entire conversation and moved on to another subject.

Should the family member tell her the truth again and watch the agony wash over her anew? Or, should she spare her the pain and merely lie?

Dignity or Happiness?

Such heartbreaking dilemmas inspired an article in The New Yorker by award-winning writer Larissa MacFarquar. In her challenging piece, MacFarquar explored the practice of “therapeutic lying,” a controversial approach in dementia care that suggests deception rather than dragging distraught people back into a reality they can’t understand. Throughout her sensitive investigation, MacFarquar posits a quandary: Should we be brutally honest with dementia sufferers in the name of dignity and truth, even if the facts devastate them? Or, should we lie and cooperate with their delusions, keeping them blissfully unaware? “What is more important,” she asks, “dignity or happiness?”

Critics question the ethics and impact of such systematic deception on the hearts of caregivers and dementia sufferers alike; although, the dilemma undoubtedly reveals deep empathy for people with dementia on both sides of the debate. Yet, it also reveals 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. Personhood does not end with our cognitive abilities. The Bible declares our immutable worth as image bearers of God (Gen. 1:26), a value no disease- even dementia- can destroy. We are more than merely what we think. Therefore, 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).

Christian love endorses neither brutal reality, nor tricky falsehood, but rather seeks to build “others up according to their needs” (Eph. 4:29), combining grace and truth. It views each person as Christ sees: cherished, unique in the world, worthy of time and sacrifice, with a specific role in God’s story.

Artificial environments, as suggested by “therapeutic lying”, hardly embody this love. Such imposed realities ignore the unique stories, memories, and experiences that enrich a life and the varied needs each person harbors in a given moment. But most of all: systematic deception discounts the fluctuating course of dementia, when occasional moments of lucidity actually break through the fog. I have many stories of residents, struggling with dementia, who have incredible insights about their spiritual convictions. Memories of Scripture, God’s grace and rich prayer lives- are all lost if we create an artificial world.

This neglect for individual experience and worth can actually worsen distress and confusion among dementia sufferers. The resulting disconnect can deepen anxiety among dementia sufferers, and even more concerning, erode crucial relationships. My own experience suggests that, 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.

Even 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

But when a woman with severe dementia, for whom the last shreds of working memory have vanished, weeps for her lost sister, should we bluntly remind her of her sister"s death? 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 through the factual inaccuracies, and discern the deep needs driving them.

Here are some practical suggestions:

  1. 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. A supportive person can enter into a conversation with them about how much the person meant to them; and what special memories they have. At other times, redirecting the person to other subjects or interests can assist them to move beyond the alternate reality.
  2. In advanced dementia, however, people can no longer comprehend reality,    and thus 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 really need? Their attempts to comprehend and to communicate must be taken seriously, and respected, just as for anyone else. Recently I simply sat with a man who had just been told his wife had died. He sensed something was amiss because she had not come for awhile. However, when we told him, he responded with grief and amazing acceptance. A few days later, he seemed- and we cannot be certain- to show no signs of remembering her passing.
  3. “Understanding the world they are experiencing does not mean we have to lie about it,” says Dr. John Dunlop, long time 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 loved one, 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.’”
  4. We can invite them to share positive memories of their entire family, including but not limited to the loved one. We can redirect them to talk about living loved ones or family members. And sometimes, where no family or friends are accessible, we can celebrate our community where they currently live and the “family” they represent.
  5. 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.”
  6. If the loved one has forgotten the death, show them love, speak of the family stories, but as possible avoid trying to remind them of the death. They simply do not have the capacity to do so

When his mother, her mind clouded with dementia, repeatedly mistook him for his father. the son reply not with, “I’m not Dad,” nor pretended to be his father, he simply respond with, “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, even if the names and faces were all muddled in her mind.

“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.”

A final word of encouragement: Be prepared for the unexpected responses from the person struggling with dementia. When I asked the family member referenced at the start of this article, “What did you tell her about the fact of her sister’s death three years ago?”; the family member admitted to me, “I told her the plain truth; your sister died three years ago and she is not coming to visit you.”

To her surprise, the resident responded with a glint in her eye, “Well then, she must have been resurrected because I saw her yesterday!” At which the family member smiled and added, “ Let’s go for lunch.”

Written by Dr. Daryl Busby