In response to my last post on people unable to recognize their cognitive impairment (anosognosia), one reader described the dilemma of wanting “to include in social settings a loved one who demonstrates anosognosia about [his] cognitive impairment.” I have gone ahead, she says, and “confidentially shared with a few folks in my Christian community, yet am uncomfortable with others knowing something my loved one doesn't about himself. Yet if I don't share, then I am worried others won't know how to lovingly respond to him.”
It is, I suspect, a common dilemma. The problem arises most seriously in the issue of driving. (I’ve explored the issue in other posts, but anosognosia significantly complicates the problem.) There are at least two sets of issues: first, the practical ones that will arise if he finds out that you have spread what he considers a lie about him and, second (and much more difficult) the feelings you may have of having “betrayed” him. I have a couple of thoughts, but I would certainly welcome comments from those who have faced the problem.
First, would arranging to have his license taken away or even letting other people know about his diagnosis be a “betrayal” of the person you love? I don’t think so. The person you love is now different in an important way from the person he has been: He can no longer recognize reality and act appropriately. Remember, anosognosia is an injury to the brain that makes him incapable of recognizing his impairment. He doesn’t have the capacity to make a good judgment about himself. You must do it because he can’t. The only real question is whether in any particular instance the choice is actually a loving response, done in the best interests of everyone. Fulfilling your responsibility in a loving manner cannot be betrayal … regardless of what the patient feels and believes, regardless even of what you feel.
Second, a dangerous driver must not be allowed to continue driving. Period. That outweighs any other consideration, including any of his feelings that you have betrayed him and any of yours. If the patient will not stop on his own, someone has to interfere and make it happen, even if it requires informing the authorities. This doesn’t have to be the caregiver directly, but if no one else does it, the caregiver must at least arrange for it to happen, perhaps by asking someone else to make the call.
The issue of whether to inform friends is obviously much more ambiguous because no one is directly in danger of injury. As any regular reader of this blog will know, I believe strongly in telling other people about one’s own diagnosis (see here and here). I assume that friends who are at all close will have already noticed the symptoms or will soon. Discussing the disease frankly will probably decrease embarrassment and isolation. But the choice to let other people know might appropriately be outweighed by the likely consequences (if he finds out) or even by one’s feelings of betrayal.
Another possibility, however, would be to determine whether the friends already know something is going on. If they do, you might tell them about the physical nature of anosognosia over which no one has any control. This doesn’t give them any new information about your loved one (the friend already knows) but it does add objective information that may help in any given situation.
If I were a caregiver, I think I would probably tell a trusted small circle of friends, not so much to help them but to help me in dealing with a difficult situation. My loved one might reasonably expect me to keep confidential his problem but not to keep me from getting the help I need.
Don’t forget that the nature of progressive dementia is that the caregiver has gradually to take over more and more of the decision making (and lots else) that the patient has always done. You might as well get used to it early.
These are only my thoughts, however. Some of you readers will have certainly faced these questions. What do you think?