In an earlier post this week, I referred you to an online interview given by Lisa Meyers, the wife of musician/songwriter/actor Kris Kristofferson, to the Huffington Post about Kristofferson’s diagnostic journey to Lyme disease. Among the misdiagnoses that Kristofferson received during a 12-year ordeal to determine what was causing him a variety of debilitating symptoms, including memory loss, was Alzheimer’s disease.

In the course of this interview, Meyers perpetuates a misconception about Alzheimer’s disease that I must correct and clarify.

Meyers states that people with Alzheimer’s disease don’t know they have memory loss, a cognitive deficit that occurs in the first of the three stages of AD, along with impairment in executive functioning, such as problem-solving and decision-making. Because Kristofferson was aware of his memory decline, Meyers believed that he could not have Alzheimer’s. This is not true.

Contrary to popular belief, according to national Alzheimer’s disease authority, neuropsychiatrist Dr. Peter V. Rabins, upon whom I rely for AD expertise in my book, “Two-thirds of AD patients never know they are ill, and one-third are painfully aware.”

At the time that I wrote “Our Parents in Crisis,” Dr. Rabins was a professor and director of the Johns Hopkins Division of Geriatric Psychiatry and Neuropsychiatry. He retired from Johns Hopkins in 2016.

A researcher as well as a clinician, Dr. Rabins founded the geriatric service at Johns Hopkins in 1978 and thereafter dedicated his illustrious career to psychiatric disorders among elders. He now serves on the faculty of the Erickson School at the University of Maryland-Baltimore County, which focuses on the management of aging services. Among his many accomplishments, Dr. Rabins is the co-author of “The 36-Hour Day,” a popular self-help guide for caregivers of people with Alzheimer’s disease and other cognitive disorders.  

I had the pleasure of hearing Dr. Rabins speak at Johns Hopkins in 2012 and asking him questions about Alzheimer’s disease.

Before diagnosing someone with AD, he advised, a physician—preferably a neurologist or a neuropsychiatrist—should establish that “there is no other cause for the patient’s cognitive deficits.” Alzheimer’s disease is considered “a diagnosis of exclusion,” he said.

Dr. Rabins’s own diagnostic process, he explained, consisted of gathering information on the patient’s history, administering neuropsychological exams to her/him, and interviewing the patient, family members, and friends over a period of weeks.

“Diagnoses based on this type of clinical information,” he informed, “are accurate about 90 percent of the time.”

Dr. Rabins created a substantial legacy at Johns Hopkins, the jewel of which may be the Peter Rabins Alzheimer’s Family Support Center. It is an invaluable resource for families coping with caring for loved ones who have AD. I encourage you to listen to an informative online video on the Family Support Center’s website in which  Dr. Rabins answers the compelling question: “How do you know if you have Alzheimer’s disease?”: http://www.hopkinsmedicine.org/psychiatry/specialty_areas/memory_center/rabins_alzheimers/

Rabins begins this video by saying, “Dementia is not inevitable as we age,” and then elaborating that only 10 percent of people over the age of 65 have dementia of some kind.

Although dementia becomes more common as we get order, he continues, 50 to 70 percent of all people age 90 and over “still have normal thinking and cognition.” Among those who do not, their cognitive impairment may be mild and, therefore, not severe enough to be evaluated as dementia.

Later in the video, Rabins says that the “majority” of people with Alzheimer’s disease do not know that their memories are faulty, but he does not cite the two-thirds/one-third breakdown. Unfortunately, the public typically sees or reads about only those Alzheimer’s patients who are unaware of their cognitive deficits—such as country singer Glen Campbell, who was diagnosed by the Mayo Clinic’s Ronald C. Petersen, M.D., Ph.D., another national AD authority.

Campbell’s eyes and comments during a testing session that he has with Dr. Petersen in the documentary film, “I’ll Be Me,” make clear his lack of understanding and awareness. He has no idea why Petersen is asking him questions.

In contrast, one of the caregivers interviewed on the Family Support Center video describes the agony that her husband went through, knowing that his mind was failing him, but not knowing why. His eventual Alzheimer’s disease diagnosis gave this couple relief from a painful uncertainty.