How Should I Tell Others That a Family Member Has Alzheimer's?

A fellow caregiver asked...

What's the best way to tell other people that my family member has Alzheimer's disease?
 

Expert Answer

Paula Spencer Scott is the author of Surviving Alzheimer's. A Met Life Foundation Journalists in Aging fellow, she writes extensively about health and caregiving; four of her family members have had dementia.

There's no single "best" way or timetable for sharing this information. Ideally, in the early stage, the person with the disease should direct how and when to tell others. Some people feel embarrassed or ashamed and don't want anyone to know. Others don't believe they have memory loss because they can't remember it being a problem, and therefore they dismiss any such conversation. This puts their family in a difficult position, but generally it's best to honor their wishes for awhile. Those who spend a lot of time with the person will know something is amiss. If they ask directly, it usually makes sense to be candid.

In later stages, when the person can't make these decisions any more, give others information they need without feeling you're violating your family member's right to privacy. Your circumstances and comfort level will dictate whether you choose to tell on a need-to-know basis or by making a more general announcement. This sample letter includes a lot of positive detail. Or you could simply say, "My mother has an illness that affects her ability to speak and to remember information, but she still really enjoys and needs social contact."