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Published On February 24, 2015

CLINICAL CARE

The Tragedy that Powers Still Alice

The Oscar-nominated film puts Alzheimer’s front and center. An MGH social worker talks about the disease behind the story.

Alzheimer’s disease is rapidly gaining ground in the aging American population, yet it rarely moves into the national spotlight. That has seen a welcome change with Still Alice, a critically-acclaimed film released late in 2014. Julianne Moore plays a Columbia University linguistics professor whose life is quickly consumed by early onset Alzheimer’s disease. The film has won a number of awards, and Moore is the favorite for the Best Actress Oscar.

Alzheimer’s organizations and advocates are welcoming the attention the film is bringing. Among them is Barbara Moscowitz. For the past 30 years, Moscowitz has coached, comforted and fought for Alzheimer’s patients and their families as a social worker in the departments of Social Services and Geriatric Medicine at Massachusetts General Hospital.

 

Q: You’ve seen Still Alice twice now. Did the film do a good job in showing the real challenges of Alzheimer's?

A: Well, I think it is an exquisite film. Nearly every scene in the movie was reminiscent of a story I have heard or a patient I have worked with.

As her disease progresses, Alice’s world gets smaller and smaller. We see confusion as she becomes disoriented on her college campus after a run. We see she forget dates and dinner appointments with her husband despite efforts to use her phone as a reminder. Students criticize her teaching skills, calling her disorganized and incoherent…far from what she had been as an esteemed and accomplished scholar.

By the end of the film she has lost most language skills and the ability to think abstractly. Her family begins to make decisions for her, not with her, because she was no longer able to participate in discussions. I could not have imagined a portrayal that captures the essence of this disease in such a painful and real manner.

 

Q: Julianne Moore has won a lot of praise. What did you think of the job she did?

A: She portrayed the reality of the disease remarkably well. Her facial expressions capture the profound sense of confusion and aloneness she experienced when she felt changes but was not telling anyone.

 

Q: The condition must be profoundly isolating. What else do you see in a patient’s progression into the disease?

A: Over time someone with Alzheimer’s detaches from the world the rest of us inhabit and enters into a smaller world of the present, devoid of the finer details that characterize our daily lives.

It is natural for families to attempt to prompt and remind. However, at this point in the disease, it is time to stop expecting the person with Alzheimer’s to join us in our world; instead we need to meet them in their world. It is a world of affect, not facts and data.

This can be a time of tremendous sadness, grief and adaptation for families. Despite our best efforts, it is nearly impossible to truly understand the experience of a family literally watching a much-loved individual ‘disappear’ while still living.

 

Q: What other big challenges exist for the families?

A: Because it manifests itself as a disease of behavior, Alzheimer’s is often invisible. Many patients may still look perfectly healthy. This is a strange departure from our conventional representation of disease. If your relative has a heart attack, there is no denying the illness, and after hospitalization there are appointments and treatment protocols. It is similar for cancer. But the tragedy of disease is still there, even though there are fewer outward signs.

There is also not a lot of hope we can extend to the family that this will get better. Unfortunately, when someone is diagnosed with Alzheimer’s the only news is that it is a progressive and terminal disease. While clinicians may talk about the importance of good nutrition, exercise and social engagement, most clinical treatments aren’t very effective.

Lastly, families can feel isolated from support. Because there is still not enough support given to caregivers, Alzheimer’s patients and their families are far too consumed to publicly advocate for the disease. Instead, denial, confusion, despair and terror often overwhelm them.

 

Q: What are you doing at MGH to help those patients and families?

A: My goal is to create a unit of skilled geriatric social workers and nurses whose sole responsibility is to provide support and education to patients and families over the entire course of the illness.  Taking care of these patients and their families today needs to be just as important as looking for a future cure for Alzheimer’s.

The trauma of living with Alzheimer’s is beyond comprehension. We must find better ways to help all who are currently living with this disease.