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 and must live with the outcome, we would be acting deceitfully if we misled the other person with false information. 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. However, in most social interactions, we decide whether and to what extent the truth is appropriate. 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.
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 appropriate 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 people’s limitations. We don’t demand that someone who needs a hip replacement join us jogging. With the same kindness and respect for limitations, we should accept the disability people with dementia experience—loss of memory 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.
One of the more difficult and painful decisions I see families make is moving a loved one into a care facility or adult family home. Most often, the person with dementia feels betrayed and abandoned because they are unable to comprehend the extent of their care needs. Family members feel guilty, that they have failed in a most significant way. It is often strictly true that the decision was made by the family. However, when someone cannot comprehend their own care needs, a move is much less painful to live with if the decision is framed as due to a doctor’s recommendation or orders.
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.