When I talk with families or caregivers about the need to recognize and accept the alterations to reality caused by dementia, someone invariably expresses reluctance to be untruthful. Most of us find it difficult at first to go along with and support our loved ones’ confused beliefs about what has happened or is happening.
Are we being dishonest when we support the altered sense of reality that results with memory and rational thought losses? To tell a lie is to say something we know to be untrue with the deliberate intent to deceive. If we are in a situation with another person and we both comprehend what’s happening, we would be acting deceitfully if we then chose to mislead the other person. It would be especially egregious if we misled them with the intent to benefit ourselves at their expense.
When we go along with the increasingly altered sense of reality that dementia causes, we are, strictly speaking, being dishonest. With our healthy minds, we know what reality (the truth) is. They don’t, and can’t, because they have lost the very cognitive skills needed to keep us grounded in reality: memory and rational thought. And yet, in most social interactions, we decide whether and to what extent the truth is appropriate anyway. We take into account more than just the strict veracity of the statement: we consider the hearer’s cognitive development as well.
We respond to a six-year-old’s question about terrorism or where babies come from differently than we do to the same question from a twelve-year-old. We do this as a kindness—because a six-year-old is not able to understand and process information in the same way a preteen can. We would give a more detailed and truthful answer yet to a twenty-two-year-old, provided the twenty-two-year-old wasn’t living with developmental disabilities that had impeded his or her normal cognitive development.
It is kind to go along with altered realities
When we go along with the confused reality of someone who has dementia, we are exercising kindness. When a wife cannot remember that her husband has died, is it kind to remind her repeatedly, so that she experiences fresh grief each time she asks and is told where he is? When she does not have the cognitive ability to retain the information, should we demand that she function as if she does?
We accept other disabilities: we don’t demand that someone who needs a hip replacement join us jogging, or expect someone who is blind to enjoy the art gallery with us. With the same kindness and respect for limitations, we should accept the disability people with dementia experience—loss of memory and rational thought, and the impaired sense of reality that results—and help them function despite their impairments. When we do so, we are extending our cultural practice of limiting or altering truth to meet a child’s cognitive limitations to those whose cognitive abilities are being ravaged by dementia, not being dishonest.
When we accommodate someone’s lost ability to perceive reality, we do so out of kindness and a desire to support their abilities while making allowances for their disabilities.