Dementia Insights: A Specialist Reviews Still Alice
Shortly before the Academy Awards I had the opportunity to see the movie Still Alice at a private showing with about 100 caregivers of Alzheimer’s patients, as well as patients with mild cognitive impairment (MCI) and early stage Alzheimer’s disease in attendance. This event was sponsored by the Capital of Texas Chapter of the Alzheimer’s Association in Austin. The story line was heartfelt and the acting superb, portraying all the love and care that occurs in reality. Julianne Moore, as the Alzheimer’s patient Alice certainly deserves her Academy Award for Best Actress. However, based on many audience questions after the movie, I believe the clinical message portrayed was incorrect and only added more fear of the disease to an already fearful public.
As presented, Alice is a PhD linguistic professor at Columbia University who has just celebrated her 50th birthday. In the early part of the movie she begins to have memory problems and word-finding difficulty and also begins getting lost on her frequented jogging trail nearby the university. Then she decides on her own to seek medical help and visits a physician (not stated, but presumably a neurologist) for a medical opinion. During the office cognitive evaluation she was asked six or seven very basic questions that suggested cognitive impairment.
Nothing is mentioned about further tests being ordered and/or reviewed at the follow-up visit. However, at the follow-up visit she is told that the MRI of her brain and her blood work were normal. Two additional tests that had been ordered were reviewed. One was a genetic panel of blood tests for familial Alzheimer’s disease, which was positive. This is usually to detect dominant genes such as Presenilin 1 and 2 on chromosomes 14 and 1. Her test and that of the one daughter who was tested were positive for one of the genes. She also had an amyloid PET scan that was positive for high levels of amyloid in the brain and, along with the positive genetic test, compatible with familial Alzheimer’s disease.
My concerns are twofold: the methods by which the diagnosis was obtained, and how Alice came to seek out her physician. Both require clarification and send the wrong message.
Alice began having memory problems early on and that was followed by her getting lost on her usual jogging trail. Ostensibly, her family members were unaware of any cognitive changes until she told her husband that she had Alzheimer’s disease. This is very unusual for patients with mild cognitive impairment or Alzheimer’s, because family members are usually the first to recognize this problem. More than 90 percent of patients who seek medical attention for memory changes go to see a doctor because the caregivers are worried and recognize the problem before the patient does.
In the movie the cognitive testing consisted of only five to six questions, which is well below the standard for in-office cognitive testing. I understand that the movie is not going to show an entire cognitive evaluation, but they could easily have mentioned that more detailed testing was done, such as neuropsychological testing.
Alice’s family history for Alzheimer’s disease suggested that only her father possibly had dementia. Clinically, it would not be the standard to order detailed genetic testing in a 50-year-old patient with one family member with Alzheimer’s disease and without some very basic information from the treating physician about how very rare these genetic mutations are in the population. The familial form of Alzheimer’s disease makes up less than 0.5 percent of all people with the disorder.
Amyloid PET scans are a relatively new test and are very helpful in the diagnosis of dementia. However, they are not approved by any insurance plan, including Medicare, and they cost over $5,000 out-of-pocket. Currently they are done mostly at research centers for those who are willing to pay for them, but that is very infrequent. Medicare covered testing for degenerative dementia usually includes FDG-PET scans and spinal fluid bio-markers, and it is also usually covered by private insurance carriers.
After the movie I was asked numerous questions from the audience, as well as in my practice about ordering genetic testing for Alzheimer’s, regardless of the age and family history. Individuals also wanted to know when and where they could have the amyloid PET scan done.
I realize the movie was based on the 2007 novel by Lisa Genova, but the script writers and producers should have made every attempt to check the facts about a disease that is so prevalent and is causing such an epidemic of fear. Even putting a disclaimer on the screen stating the content as related in the movie may not have been entirely accurate or had been dramatized would at least help to reduce some of the fear of getting Alzheimer’s disease. n
Ronald Devere MD FAAN is Director, Alzheimer’s Disease and Memory Disorders Center in Austin, TX.