Monday, June 25, 2018
Health

Tampa Bay Alzheimer's experts weigh in on 'Still Alice'

Deciding whether to take in a movie usually is pretty simple. Do you like the plot? The stars? Can you cope with someone whipping out a cellphone or noisy candy wrapper?

Still Alice presents tougher questions for patients and caregivers living with Alzheimer's — specifically the inherited form that Alice develops at age 50.

What if you see sad and scary behavior that reminds you of a loved one's struggles — or your own? Will that be cathartic? Affirming? Depressing?

I found the movie to be beautifully made and engrossing, and understand entirely why star Julianne Moore is a frontrunner for an Oscar.

But to find out if it is accurate, I asked experts from the USF Health Byrd Alzheimer's Institute to watch the film and share their impressions.

CEO David Morgan and Medical Director Amanda Smith applauded the film's quality, accuracy and its potential to raise the profile of a condition that so many people would rather not discuss.

"What many people don't realize is that Alzheimer's has moved into the most expensive medical problem in the country,'' Morgan said. In 2014, the cost of caring for those with Alzheimer's was an estimated $214 billion, according to the Alzheimer's Association. By 2050, unless better treatments are found, it will be $1.2 trillion.

"This is the disease that's going to bankrupt Medicare, but there's a lack of awareness of the magnitude,'' said Morgan, a prominent researcher and advocate for funding to test medications.

SPOILER ALERT: If you don't want to know the plot details of the movie, stop reading this until you've seen it.

How true is the movie to the experiences of the Alzheimer's patients you've cared for?

Smith: I feel the movie was very accurate in portraying the experience of a person with early-onset Alzheimer's in a way people can connect with. They made a great effort to highlight some of the typical symptoms — forgetting names and plans, getting lost in familiar surroundings, having difficulty fulfilling job duties — without making it seem too clinical. They addressed the changing relationships that AD patients have with their families. Most importantly, they were true to the title in demonstrating that despite her decline, she remained "Still Alice" in many ways.

Why is that so important?

Smith: People ask me all the time how I can stand working in a field that is "so depressing." I don't find it that way at all, as despite their decline, many people hold on to parts of their personalities and still find joy in their daily lives. I think this movie helped demonstrate that.

Alice takes the initiative and pushes for a diagnosis. Is that typical?

Morgan: It's a little unusual. Later-onset patients often don't believe they have a problem. Even if there is some objective awareness, they'll rationalize it. When they find they can't balance their checkbook, they'll say, "I don't need to do it anyway. The bank does it for you." Other people do recognize and are very sensitive to symptoms and are trying to find out as early as they can.

Alice plans her suicide, but can't carry it out. Did that ring true?

Morgan: That's what Alzheimer's does. She left herself too many instructions that required her to remember too many pieces of information to complete the task. There is some level of suicide in Alzheimer patients. But one of the major issues is homicides coupled with suicides. Especially husbands caring for wives who just can't go on. It's not infrequent that someone will kill his wife then shoot himself.

Smith: I do worry a little bit about patients seeing her recording the suicide instructions to herself and then trying to carry them out.

Do you think people living with Alzheimer's should see Still Alice?

Smith: On one hand, I think the experience may hit too close to home and upset some people. Because the portrayal is so accurate, especially as Alice's disease progresses, it might make them worry that certain things they hadn't thought of are going to happen to them. On the other hand, it might provide some validation and help them not feel so alone. In particular, Alice's speech for the Alzheimer's Association may prove particularly useful in that regard. I would certainly recommend that family members see it first and then make the appropriate decision for their individual loved one with AD.

What scene really stuck out for you?

Morgan: The one where Alice said, "You know, I'd rather have cancer. Because then I wouldn't be such a …'' The word she was searching for was pariah. Alzheimer's is like cancer used to be. People don't understand it, they're afraid of it. But when you ask people over 65 what disease they're most concerned about, it's Alzheimer's.

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