What’s the Truth to Someone with Dementia?
Stories and Truth-telling
John is a 78 year old man who has been retired from his job as an accountant for over twenty years. Sadly, he’s forgotten that, along with many other things. Today, he woke up at 4:00 AM, rifling through drawers in his bedroom, shouting that he was late for work. His wife, Tricia, jumped out of bed, scared and exhausted. This had happened before, and telling him he doesn’t work anymore only makes it worse. Today was different. Today it occurred to her that she would pretend she got a call from his boss and tell him he has the day off. John looked at her suspiciously. Tricia smiled nervously and seized the opportunity: “How about some breakfast? It’ll be a good day.” John shuffled around the room and she gently redirected him into the kitchen.
John Swinton, describing one of the many terrors of dementia, writes:
“Any diminution of the self is first and foremost a diminution of community. The self is an individual and a communal process, not an individual, inner possession or state of mind. A person does not lose her self; her community loses her. If this is so, then dementia is much more than a neurological disease which occurs within the brains of discrete individuals. Dementia is a communal and relational condition that involves but cannot be defined by neurological decline.”
He softens it a bit by calling it a “communal and relational condition,” but other apt terms include confusion, frustration, deformation, transformation, reorientation. No matter what it looks like, families struggle.
There’s a path where people become more withdrawn, speak less, and do less. It’s hard to see your loved one fade away. There is another path that’s difficult in a different way, when behavior is intrusive, dangerous, or out of control, like for John. If they have the means, family members put more locks on the doors, install cameras and alarms, lock up the knives, and maintain a state of constant vigilance in their own home.
One strategy people sometimes use out of desperation is to lie to someone with false beliefs. It’s a noble lie; a lie used for a good purpose. John feels he needs to go to work. He’s distressed. But he hasn’t gone to work in years. There’s no arguing with someone like this. Tricia enters his world and makes something up: he’s got the day off. It seems to work!
Because one’s capacity to perceive reality rightly is damaged, sometimes that will work, but sometimes it won’t. Just because it makes sense within the world of this person’s mind doesn’t mean they’ll draw the same conclusions you draw. John could have just as easily insisted that, no, Tricia was wrong, he really did need to go to work today.
Many families tell me this is what they do to get by. There is no judgment for them; they’re desperate and in dire straits. However, I don’t recommend people lie to their loved ones with dementia. Why?
It’s not good to become the type of person who regularly tells lies. The moral valence of the lie is altered because of the intention behind it. Tricia isn’t lying to John for her own self-advantage; she’s doing it for his sake. This is how most noble lies work. What we’re saying when we regularly tell lies to someone with dementia is that the only thing that matters about the truth isn’t that it’s true, but what function the words serve in controlling behavior. I worry that, because we spend our lives learning to honor the dignity of others by telling them the truth, it will be very difficult for us to sustain a humanizing view of this person if we’re frequently lying to them. I’m also wary of the formative effect lying might have on one’s psyche. You may develop a utilitarian handle on the truth, coming to believe, if only intuitively, that the truth is good only when it’s useful. Nevertheless, we need to recognize that people with dementia are impaired in the capacity to perceive and handle truth, which is why it’s also not wise to just bluntly hit them with it (like Tricia telling John he doesn’t work anymore). So it puts us in a bind. If you’re looking to share a common reality (hopefully one that’s more peaceful)…
…There’s a better way. I really appreciated listening to this GeriPal podcast on transforming the care of people with dementia. In it, they discuss an approach called TimeSlips, which is creative storytelling for older adults. Full disclosure: I haven’t used the full program. Rather, I’ve appreciated adapting the idea into my practice. This is a far more positive, robust way to share a common reality with someone with memory impairment. The general idea, as I’ve understood it, is to avoid agitating people with dementia by provoking them with memory-bound questions (“Do you remember…?”). You could imagine doing something creative, as suggested in the video below. You could look at a photo album and instead of asking about the past, ask about the present: “What do you think of her dress? Look at the hair-do!” The way I’ve adapted this is to suggest that when someone appears distressed by a memory, like John, you could redirect by responding to the underlying emotion (“You seem really worried! Let’s make sure you get a shower, that can help.”) and asking about the context (“What have you liked about your job?”). I’m not saying this will always work, but lying doesn’t always work either. It does provide a more positive platform on which to rebuild one’s relationship with this person, a platform that is more focused on the present moment and imagination.
Again, I’m not moralizing. I’ve seen the desperation of families as they’ve struggled to care for someone whose behavior is disruptive or dangerous. If they feel the need to continue to lie in an attempt to keep the peace, I’m not going to twist their arm to do otherwise. I’m also not suggesting this more creative approach should be the only tool in the toolbox; medication serves a role too. So it’s helpful to have a broad array of tools while at the same time acknowledging that the metaphor eventually breaks down: this isn’t a project you’re working on, it’s a person you’re in relationship with. How can you sustain this relationship?
Swinton elsewhere describes a woman who appeared agitated at dinner time fiddling with her necklace. Attendants may have given her medication to calm her down, told her the necklace doesn’t need to be pulled out from behind her bib, or they could have taken the necklace away. But he recognizes, like the creators of TimeSlips, that the present moment matters:
“What difference does it make if a woman pulls out her pearls if she can’t remember why she’s doing it? But such a question serves only to illustrate how future-oriented our sense of self is. If the present moment is indeed deeply significant, and if the person can experience both pleasure and communication in that moment, then the future orientation of her actions is not the point. The moment is the point.”
Swinton argues that dementia “brings suffering with it and that suffering creates strangers in many senses of the word … [dementia] makes strangers of ourselves and the ones we love.” This idea of stranger-hood is profound. In Greek, “philoxenia,” often translated to English as hospitality, literally means “love of strangers.” The challenge is to find hospitable ways to care for people with dementia, practices that recognize they have become or are becoming strangers (they have different ways of seeing and different limits), but also seek to welcome them back into community. Honoring them in the present moment is one way to do that.