At the Heart of Dementia: A Challenge to Truth

Alec, whose wife had Alzheimer’s disease, had heard that people in the later stages of dementia often ask for their mothers.

Nevertheless, the day Hilary asked him, “Where’s my Mom?” Alec was taken aback. Because they had always been completely honest with each other, he told her, “Your Mom died 30 years ago.”

“That can’t be! Why didn’t someone tell me?” Hilary cried. She wept and wrung her hands for close to an hour. Although the reason she was crying soon slipped away from her, she was distraught for the rest of the day.

Alec felt dreadful to have caused this grief, but he was at a loss to comfort her or know how to respond differently if she asked for her mother again.

He related all this to his support group. Another member, Ann Marie, said, “Don’t make her grieve over and over, just tell her that her mother is doing the laundry or gardening. It’s for her own good, so it’s not lying. It’s just a little fiblet.”

That’s how Ann Marie herself handled it when her father asked for his deceased wife. Her “fiblet” did, in fact, satisfy him briefly and worked its fleeting magic again each time he asked.

A newcomer, Victoria, spoke up. “I never did that because I didn’t want to lie to my husband. But when it came time to move him to a nursing home, I felt so guilty about it that I did lie and said I was taking him to the doctor’s. I just didn’t know how to tell him. Now I feel doubly guilty.”

Those who love and care for people with dementia frequently find their moral commitments—especially a commitment to honesty—challenged in ways they never anticipated.

The tough challenges begin when people are in the moderate stage of dementia. That’s the time when they are losing the ability to be independent and important changes need to be made.

Most of us are unprepared for the resistance people with Alzheimer’s disease can put up to any suggestion of change. Declining insight and judgment often prevent them from seeing the difficulties they have in functioning on their own. We have their safety in mind, but they experience our suggestions as unwarranted intrusion and deprivation.

We fail when we try to reason with them because we try to get them to see what we see. When they don’t, we conclude that they can’t be reasoned with, and deception may seem like the only way to get their compliance.

For instance, if we tried and failed to convince them to stop driving, we may lie and say the car no longer works. We may even disconnect the battery or substitute blanks for their car keys. (For more on the driving dilemma see my blog about preserving autonomy against the odds.)

Because we need their compliance in many things that they may stoutly resist—taking meds, going to the doctor, attending an adult day program—the temptation to dissemble is always there.

Should one resist that temptation? Does it really matter?

Yes, it does matter, for many reasons.

Deception can undermine trust, and trust in their primary relationship is a major source of security for people experiencing confusion and uncertainty. Their trust is also an asset for those caring for them.

Furthermore, an imbalance of power is inevitable in the caregiving relationship. Even though exhausted care partners may turn to lies as a last resort, in doing so they inadvertently take more power—that of the truth—away from the people they care for. That is not to say caregivers misuse that power or that is their intention, but the risk is there.

Lies demean the lied to. You don’t want—even unintentionally—to diminish those who have dementia because Alzheimer’s is already a disease stigmatized by the myth that, with this disease, the person disappears, leaving an empty shell.

In fact, one of the most important parts of the caregiver’s job is to respect and reinforce the waning sense of identity and self-worth of the individual with Alzheimer’s. Jason Karlawish, MD, bioethicist and physician, calls that “the moral role of the caregiver.” Karlawish is co-director of the University of Pennsylvania Memory Center and director of the Penn Neurodegenerative Disease Ethics and Policy Program.

Karlawish, quoted in an article in the Washington Post, grants that there’s the need sometimes for “loving deception” but feels “the default should be truth and the mere fact that the truth may be painful isn’t sufficient to avoid it.”

When, then, is it okay to lie? Ethicists generally agree that a lie is justified only if people cannot absorb and understand a particular truth.

But even then there are other options.

With that in mind, let’s revisit the anecdotes that open this blog.

What should Alec tell his wife who asks for her long-dead mother? It was right to attempt the truth once. But Hilary’s reaction showed she couldn’t process the truth. This is not the time for Alec to switch his story to “Your mom is gardening.” It’s the time to comfort her. The need for comfort is most likely why she asked for her mom in the first place. When the world doesn’t make sense and you’ve lost much of the memory of your adulthood, your mother is the person you want in order to feel secure.

Alec can say, “I know your loving mom cuddled you and made you feel safe. I love you too. I’ll stay with you. I’ll cuddle you and keep you safe.”

With this response, Alec would avoid a lie and address the need behind Hilary’s search for her mother.

Ann Marie’s “fiblet” when her dad asked for her deceased mother did satisfy him but only briefly. I call this the “Band-Aid approach” because it’s a quick fix that doesn’t address the real need behind the question. Ann Marie might comfort him if she sat and held his hand and reminisced with him about her mother. Why does this work when he won’t remember that his wife is dead? It works because emotional memories are much more durable than other kinds of memories. It comforts him to talk about his wife. He will remember that feeling and that may reduce his anxiety.

Victoria’s lie helped her initiate what is probably the most difficult thing a caregiver has to do: place someone in long term care. But the consequences of the lie were costly for her and for her husband. His adjustment to the nursing home was rocky because he felt hoodwinked, and she was overcome with guilt.

As hard as it is to tell the people you love that you are taking them to another place to live, it is the only just thing to do. You can say, “I need you to do this because I love you, and I want you to have the best care. I will never abandon you [their worst fear]. I will be there almost every day.”

Lies to soften the edges of a harsh truth or to help someone save face are examples of Karlawish’s “loving deception.”

Jill, another member of my support group, took her husband, who had been diagnosed with Alzheimer’s, for a driving test to see if he was safe behind the wheel. She told him the state now required everyone his age to be tested. This helped him save face because he didn’t feel singled out. He failed the test, but he was inclined to accept the result as typical for his age.

Part of Betty’s identity was that she was a good money manager. It was she who paid the bills in her marriage. When she could no longer accurately write a check, her husband wrote them and asked her to go over his work to make sure he had done it correctly and then to sign the checks. Was he deceiving her? A little, but it was done from love and to preserve a valued part of her identity for a while longer.

Withholding information can also be a form of deception. Most caregivers learn through experience not to tell a person with dementia days ahead of time about an appointment to see the doctor or plans to go to a concert. They tell them only a couple of hours beforehand. Otherwise, the individual with dementia suffers anxiety for days over when it will be time to go, and the caregiver faces the endlessly repeated question, “When do we go?” This deception is a kindness to both.

After Alec understood that the 30 years since her mother died were mostly erased from his wife, Hilary’s, memory, he could imagine how unfamiliar the present seemed to her. And he understood that the particular truth that her mother was dead was especially threatening to her. Clearly, his loving purpose would be better achieved here by comforting than by the bald truth.

Solutions to moral challenges in Alzheimer’s care are rarely black and white or simple. Nor is it easy for the stressed caregiver to step back and reflect on what’s really going on. It takes effort and commitment to see what people with Alzheimer’s see, to learn to be sensitive to the deeper needs expressed by their behavior and then respond in a new way.

But when we are guided by that other view of reality, and by those needs and by love and respect, good and moral solutions are easier to find.