Truth or Consequences?
Where is my mother? A simple question, but so hard to answer when the person’s mother has been dead for many years.
I am missing an important meeting. Can you take me? Not an easy request when the person is long retired, and there is no meeting.
These types of questions are very common among those with dementia, and they pose dilemmas for caregivers and families. Do you tell the truth, possibly opening up fresh grief or crushing their sense of self? Or do you lie, and worry that trust is being eroded?
Experts have come up with different approaches to handle these “unanswerable questions”. Depending on the questions being asked, your past experience when responding to these questions, and the nature of your relationship with the person asking the questions, any one of several approaches may be best.
Tell The Truth
Proponents of this approach encourage caregivers to help ground the patient in current reality. They recommend telling the truth, even though it may be upsetting. In recent years, support for this approach has waned. One reason is that telling the truth generally does not result in any lasting re-orientation of the patient. Another reason is that by telling the truth, you risk having the person experience the trauma of losing a loved one or a job, all over again. Caregivers have to assess the merits of truthfulness against the odds of inflicting emotional pain.
However, for those who are worried about harming their relationship by not telling the truth, or when a truthful response is not likely to greatly upset the patient, it may still be an appropriate approach.
Some experts now encourage caregivers to consider what is prompting the patient to ask these questions and to respond to the underlying need, not the question. The method is called validation, and it was first advanced by Naomi Feil. If someone is asking about a deceased loved one, a caregiver can respond by saying, “You are thinking of your mother. Tell me about her. What did she like doing? What did you do together?” These kind of questions allow the patient to share memories and in doing so, bring her memory back.
If someone wants to go to work, or pick up children from school, or do some other activity that used to be a part of the daily routine, think about what sparked the request. Is the person worried that children are waiting to be picked up? Or is the person restless without enough to do and wanting the structure and activity of previous work?
There is some trial and error associated with trying to validate the needs that form the basis of the unanswerable question. The more you know about the person’s past, the easier it is to identify what might be prompting the questions. If you are not a family member, find out what the person did for a living, the names of children and spouses, and the pattern of daily living, and share these questions with the family, who may be able to help decipher the needs.
If you think that telling the truth will upset the person, and if you cannot figure out the underlying need, try to redirect the person. By turning their attention to something else, it is possible to refocus people so that they forget about their initial questions. For example, if someone wants to go to work, you might agree, but you think you both should have breakfast first. Or you can get in the car, and say that you have to do a few errands on the way to work. Once dementia patients are refocused, they often forget about their original request.
There is no one approach that will work for everyone, every time. Figure out your response based on the nature of the question, if there are realistic options for redirection, and whether you can obtain enough information to successfully validate the person’s need. Be kind to yourself and your patient. This is difficult work!