Published on: May 7, 2012
by Marie Marley for Huffington Post
Most Americans remember Ronald Reagan’s 1994 poignant letter to the American people announcing that he had been diagnosed with Alzheimer’s. It helped reduce the stigma of the disease and set the stage for future public figures to reveal their diagnoses instead of hiding them with a feeling of shame. Notables who followed Reagan’s example include Charlton Heston and, more recently, Pat Summitt and Glen Campbell.
Why Informing Others Is Important: When a person is diagnosed with Alzheimer’s, it is usually very difficult to decide whether to make the diagnosis public, but there are many advantages to doing so. One is that it will help others be more understanding and compassionate with the diagnosed person. In addition, revealing the diagnosis gives friends and family members an opportunity to participate in planning for the future. Perhaps one of the most important reasons to go public is that it enables the patient and the caregiver to receive understanding and emotional support.
Who Should Make the Decision: When people with Alzheimer’s are still able to participate in the discussion, it should ultimately be their call. If they can no longer make such decisions then it’s up to the spouse, children or other close relative to decide what to do.
Whom to Inform: At a minimum, immediate family members, including teens and younger children, should be told about the diagnosis. It’s also helpful to let close friends know what’s going on. In addition, you may want to let neighbors and more casual acquaintances know about the diagnosis so they, too, will understand the situation.
How to Let People Know: There are several ways to communicate to others that you or a loved one has been diagnosed with Alzheimer’s. First you need to decide who will announce the news — the patient, a family member, or close friend. Respect the patient’s desires in this matter if possible. The announcement may be made at a family meeting or you may want to inform people individually by phone or in person. Sometimes sending out a letter can be helpful because it gives people time to digest the news before talking with you about it. This avoids putting them on the spot.
Reactions to Expect: Some people may withdraw from you and your loved one because they don’t feel comfortable being around someone with Alzheimer’s. But most family members and friends will rise to the occasion, accept the diagnosis and offer support both for the patient and the family, including the person who will become the primary caregiver.
Special Issues to Consider When Informing a Teenager or Child: Be especially thoughtful when informing young people about the illness. It’s important to be honest with them about the situation. With younger children you need to use simple language they can understand. Tell them the basic facts but don’t give more information than you feel they can handle.
Legal Obligations to Inform Others: In some states physicians are required to inform the Bureau or Department of Motor Vehicles when a person is diagnosed with dementia. Check with your physician about whether he or she has a legal obligation to inform any authorities.
If You Decide to Keep It Confidential: You have the right, of course, to keep the diagnosis confidential, but realize this can sometimes lead to stress for everyone involved. It prevents both the patient and the caregiver from getting much-needed support from friends and family members.
My Personal Experience: In my book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy, I discuss in more detail the complexities of deciding whether to divulge an Alzheimer’s diagnosis. I ended up keeping it secret from the patient — my loved one, Ed — and his son, although I informed my friends. Ed had always said he’d kill himself if he got Alzheimer’s, and he’d been amassing sleeping pills for that very purpose. I didn’t know if he’d actually do it, but I didn’t want to take a chance. I couldn’t tell his son because I was afraid he might tell Ed. Many times my life would have been much simpler had I told them, but I did my best to find the right approach and I stuck with it.
Conclusion: Informing people that you or a loved one has been diagnosed with Alzheimer’s can be painful and exceedingly difficult, but in most cases it’s the best course of action and will ultimately enhance everyone’s ability to cope with the illness.
Research has demonstrated that, when it comes to medical concerns, the fear of developing Alzheimer’s (and other forms of dementia) exceeds the fear of every other type of health condition.
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