Should You Share a Loved One's Dementia Diagnosis?

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In response to my post on people being 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.”

This is, I suspect, a common dilemma. The problem arises most seriously in the issue of driving. (General stubbornness or refusal to give up the car keys is challenging, but anosognosia significantly complicates the problem.)

There are at least two sets of issues here: 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 experience 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 considered 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, and 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 of betrayal 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 of my readers will know, I believe strongly in telling other people about one’s own diagnosis. I assume that friends who are at all close will have already noticed the symptoms or will begin to very soon. Discussing the disease frankly will probably decrease embarrassment and isolation. However, 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 would be to determine whether the friends already know that something out of the ordinary 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 his problem confidential, but not to keep me from getting the help I need.

Don’t forget that the nature of progressive dementia is such 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 will have certainly faced these questions, and I am curious to see your take on them. What do you think?

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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15 Comments

By far, the most serious danger posed in the earlier stages of the Alzheimer's disease is when the individual may decide they want to go for a walk, go searching for "home," or maybe just walk outside to get the paper. In a restaurant they may go to a rest-room. When they turn around, the place they expect to see is gone and they find themselves standing helplessly confused what they see is totally unfamiliar to them.

It is IMHO the host accompanying the person should understand the individual has Alzheimer's Disease, be aware of the danger, and treat the person with patience. Also, Confabulation is common. The person will say things to people containing information that is blatantly false, tell of actions that inaccurately describe history, background and present situations. The added danger is the answers are coherent, internally consistent, and appear relatively normal. Conversing with a LO who has Alzheimers is often like talking with your cat. Acknowledge, respond, be affectionate, develop boundless patience. Forget about rational responses. Show respect, your therapeutic fictional reponses are allowed. ~DLMifm

Too many people with AD have found themselves in exactly this situation after stepping out, only to wander the streets in hope of finding the ever-elusive home of their past. Others may be trying to escape imagined abusers or an unfamiliar person looking back at them from the mirror, but whatever the reason, leaving home also means leaving the safety and security that also resides there.

IMCO you can not keep the AD hidden.
Since I was quite active in church ministries, I did have to let people know about my husband's Alzheimer's disease. I just couldn't spend time away from home anymore and couldn't spend the thinking time. I've also told our neighbors, so they are aware if they see him out walking. Which so far, he hasn't gone out alone. My husband and I talk about it occasionally, but he starts to cry and asks that we not dwell on it. So, he does know, and knows it will get worse as time goes on.
It's hard to give specific advice in these situations. I've found that selective sharing is necessary to maintain some sense of normalcy for the individual. We live in an independent living facility where the director feels that he is in charge of everyone. He constantly has had to be reminded that he isn't and to quit trying to find ways to force his issue...e.g., move the individual into an assisted care facility. Read, it's about the money, not the patient. I've had to engage a lawyer so that he will leave us alone and I make sure that I never leave my dad alone. Someone is always with him to ensure that other mean-spirited residents don't tell tales because he might wander the hallways and ring someone else's bell. He did that once in two years. So, long story short; be selective about who you tell and how you tell it. I've found it best to leave it with intimate friends and to hire the help I might need at the appropriate given time.