“Still Alice” Puts Dementia and Caregiving Front and Center

By Sally S. White

Julianne Moore’s Golden Globe-winning performance in “Still Alice” puts the excruciating topic of early-onset Alzheimer’s disease front and center. Moore brilliantly captures the rapid mental deterioration of Alice Howland, a fictional 50-something linguistics professor who goes from teaching at Columbia University to confusion, frustration, anguish and ultimately losing her ability to speak. As Alice’s disease progresses, her family is forced to confront the devastating reality of her continued physical vitality in the face of rapid cognitive decline.

Moore’s haunting performance forces us to think about the Alices of all ages in our own lives. According to the Alzheimer’s Association, 5.2 million Americans are living with the disease. That number will increase rapidly as the baby boomer generation ages. With no medical treatment to prevent, cure or even slow the progression, the number of people aged 65 and over with Alzheimer’s could triple to more than 16 million by 2050.

The impact is far greater when you consider the toll on caregivers. Last year, approximately 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias. The heavy emotional and physical burden caregivers take on can have a profound negative affect on professional careers and other family responsibilities.

I understand this personally. My own father fought a long and difficult battle with dementia, which certainly took its toll on me – an only child – and my mother. Professionally, during 30 years in the aging services field, I have met hundreds of families dealing with Alzheimer’s and other forms of dementia. I doubt there is a person reading this who hasn’t been touched by the disease in some way – whether through a spouse, a parent, grandparent, sibling, co-worker or friend.

“I wish I had cancer,” Moore’s character tells her husband. “I wouldn’t feel so ashamed. When people have cancer, they wear pink ribbons for you, go on long walks and raise money. You don’t have to feel like some kind of social…I can’t remember the word.”

As a community, what can we do to support the Alices in our lives? First, we can spread the word about resources that exist in our region. A dozen adult day centers in the District, suburban Maryland and Northern Virginia offer not only a vibrant place for loved ones to go during the day, but important respite for their family members who may need to go to work or get a break from caregiving.

The most effective centers offer a combination of stimulating programs (art therapy, field trips, inter-generational activities), health monitoring, socialization, and assistance with activities of daily living. “Family members tend to see all the things their loved ones can no longer do,” says Sharon O’Connor, director of Iona’s Wellness & Arts Center. “We find the things they can do, the activities and emotions that bring them joy.”

In addition, “Adult day services provide a reliable source of support, restore balance in times of crisis, and enhance overall quality of life for caregivers,” according to a 2010 MetLife study.  The National Adult Day Services Association offers a list of centers throughout the country.

We also can pledge to support our friends and neighbors who may, like Alice, experience the stigma, social isolation and embarrassment that frequently accompany a diagnosis of dementia. “People write you off,” one client recently told me. Caregivers frequently think they can care for loved ones on their own and, when they can’t, they may feel guilty. Local support groups go a long way in helping family members understand the emotional rollercoaster.  There are many support groups throughout the national capital region, including at Iona.

In one of the film’s most powerful scenes, Alice is invited to speak to the Alzheimer’s Association. “Please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be a part of things, to stay connected to who I once was… My greatest wish,” she tells the audience, “is that my children, our children, the next generation do not have to face what I am facing.” That speech alone is worthy of an Academy award. But the real honors go to those who struggle with this disease every day. Let’s lighten their load by forming a loving and supportive community around them.

UnknownSally S. White is executive director of Iona Senior Services, a recent recipient of a City Fund capacity-building grant administered by The Community Foundation for the National Capital Region. Iona supports people as they experience the challenges and opportunities of aging.  It educates, advocates, and provides community-based services to help people age well and live well.