When it's Alzheimer's should the person be told the diagnosis? This can be a difficult ethical issue. Telling or not telling the patient the diagnosis is a very personal decision.
According to Susan Gilbert, writing on reportingonhealth.org, "Over the last few years there have been news reports about suicides and murder-suicides involving people with Alzheimer's." She asks herself if this might be a trend, and goes on to give an example:
A paid death notice in The New York Times in June of this year "was for Sandra Lipsitz Bem, an emerita professor of psychology at Cornell who committed suicide after receiving a diagnosis of Alzheimer's disease. Upon her diagnosis in 2010, it said, she made known 'her intention to end her life while she could still do so without assistance if and when the disease became too debilitating for a meaningful quality of life.'"
"In most instances it's better to let people know," says Carol Steinberg, Executive Vice President of the Alzheimer's Foundation of America (alzfdn.org). In my interview with her she added, "They have a right to know. This helps them understand what's going on and work to come to terms with it. It also allows them to participate in medical, legal and financial decisions that will have to be made while they are still able to do so."
In some rare cases, however, it may be best not to communicate the diagnosis to the patient. I personally decided not to tell my beloved Romanian life partner, Ed. He was obviously concerned that he might have Alzheimer's and he used humor to deal with his fears. At the end of every doctor's appointment he proclaimed loudly, "At least it isn't Alzheimer's!" Then he laughed heartily.
He was deep in denial. When he couldn't remember something simple he would refer to his failing memory as "my poor memory" or "my poor, weak memory." But it seemed he never allowed himself to wonder if it was due to dementia.
He had often told me he'd commit suicide if he got Alzheimer's, and I knew he had a stash of valium tablets he'd been amassing over the years for that very purpose. I wasn't sure he'd actually do it, but I didn't want to take a chance. He was an extremely strong-willed and proud man. I knew I couldn't watch him every moment of every day.
It should be pointed out, however, that according to Steinberg, the role of Alzheimer's disease or a related dementia as a risk factor for suicide is controversial, with the risk linked to co-existing depression in some studies.
To some extent the decision may be influenced by the person's level of dementia. Those in the early stages will understand the diagnosis and all it means. But a loved one in the later stages when diagnosed will probably not understand it at all and thus it really isn't purposeful to tell them.
Marie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. Her website contains a wealth of information for Alzheimer's caregivers.