Editor’s Note: This article originally appeared in Advances, the newsletter of the Alzheimer’s Association, and is used with permission.
To tell or not to tell – that is the tough question that many caregivers, families, and even professionals face when the diagnosis is Alzheimer’s disease.
“Every situation is different, so there is no general rule for disclosing a diagnosis, especially a diagnosis of Alzheimer’s disease,” says Douglas Maynard, MD, professor of sociology at Indiana University, who has researched the topic of delivering diagnostic news for more than ten years.
The decision to inform the person of the diagnosis must depend on when in the course of the disease the individual is being diagnosed, adds Maynard. “Physicians should consult family members about presenting the diagnosis as well as make an independent assessment of the individual’s ability to understand the diagnosis,” says Maynard.
If the diagnosis is done in the early stage of the disease, the person is likely to understand what is happening and have control over decisions such as end-of-life planning and care.
Whether or not to disclose a diagnosis of Alzheimer’s is a complex decision. The person exhibiting symptoms of the disease may deny that there is anything wrong, lash out at family members, or be unable to comprehend the diagnosis. Family members are caught between a rock and a hard place trying to decide if it is in the person’s best interest to be told.
“Many times telling a person who is impaired may not have a huge impact, except to reassure them that they are not doing anything wrong,” says Mary Lynum, whose mother has Alzheimer’s.
Lynum says that, just as with all experiences of Alzheimer’s disease, the right path varies with the individual. “Mom knew something was wrong, but interpreted it with shame, saying, “Why am I so stupid?” says Lynum. “After much thought I told her about the diagnosis. She was calmed knowing what was wrong and said, “So that’s what it is.”
Coming from a family with a history of Alzheimer’s disease, Sharon Gauert believes that someone whom the person trusts – a family member or physician – should at least try to tell the person.
“Mother was well aware that she was forgetting, but when I tried to tell her the diagnosis, she blew up,” says Gauert. “She chose not to know, but I would want to know.” Knowing that she could develop the disease, Gauert has taken steps to prepare her children for making decisions on her behalf.
“They have a legal notice from me instructing them to always act in my best interest, no matter what I say or do,” says Gauert.
The Alzheimer’s Association believes that people have a moral and legal right to know the diagnosis if they have the capacity to understand it. The diagnosis should be discussed in a joint meeting of the physician, family, and person diagnosed with Alzheimer’s disease. Physicians may need to disclose the diagnosis to the family first, though, in cases where the individual with the disease may not have the capacity to understand what is happening.
‘The physician should tell the patient, with family members present, if the diagnosis is made fairly early in the disease process,” says Sherry Riley, an administrator at a retirement facility. “If the person is cognitively impaired and unable to understand, not telling him or her won’t make much of a difference.”
Telling individuals with Alzheimer’s early in the disease process allows them to play an active role in planning for the future and to express their preferences concerning care and life-prolonging measures.
“Later in the disease process, there is a less compelling case for disclosure,” says Maynard.
So often though, a diagnosis of Alzheimer’s disease is made long after the person has lost the ability has lost the ability to communicate and comprehend information. This was the case for Charles Sanders, whose wife was diagnosed with a case of moderate Alzheimer’s over three years ago.
“Why tell her? She would already have no input on planning for the future,” says Sanders. “If she ever must be told for some reason, I think a professional should do it, since she’s likely to be angry at me.”
Betty DeBuhr knew she was living with Alzheimer’s three months before her doctor confirmed it. From the moment she noticed she was losing her short-term memory, she and her husband Robert talked openly and agreed upon long-term plans.
‘It helped me to learn more about the disease and how best to cope with behavior problems,” says Robert. “Early participation in a support group also made life easier for both of us.”
According to caregiver and support group facilitator Jean Hardigree caregivers should assess motive when dealing with this issue.
“As long as caregivers are satisfied that their words and actions are in the best interest of the person with Alzheimer’s, honesty and truthfulness does not always have to be the prime factor in the patient-caregiver relationship,” says Hardigree.