Is early-onset Alzheimer’s getting the attention it deserves?

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic leader on aging. Her work has appeared in NextAvenue.com, Journal of Active Aging, Cancer Today, Kaiser Health News and other outlets. She is a senior fellow at the Center for Health Policy and Media Engagement at George Washington University and co-produces the HealthCetera podcast.

Julianne Moore just won a Golden Globe for her vivid portrayal of the title character in “Still Alice.” The movie, which opens Friday, is based on a novel about a college professor diagnosed with early-onset Alzheimer’s disease. What makes this story so compelling is that it details the devastating toll on both Alice and her family from Alice’s perspective.

While stories about cognitive decline in middle-aged former athletes have made news for some time, the making of this movie points to how the problem is moving into the mainstream and a new willingness to address it. WBUR recently profiled 64-year old journalist Greg O’Brien – who’s been writing about his ongoing battle with the disease since his diagnosis five years ago. Reporter Kim Lemon did a three-part series for WGAL-Susquehanna Valley, Pa., prompted by her husband’s diagnosis. Gary Rotstein describes his journey to craft a multi-year series for the Pittsburgh Post-Gazette about a 57-year old man’s long-term efforts to cope with his diagnosis.

An often misdiagnosed disease

Early-onset Alzheimer’s is estimated to affect up to 5 percent of the 5 million people diagnosed with the disease, according to the Alzheimer’s Association. Many providers are not trained to look for this disease in people in their 40s and 50s. Memory problems are often chalked up to stress, menopause in women, or other problems. Proper diagnosis can be a long time coming.

One of the challenges of this form of the disease is that those who are diagnosed may be caregivers themselves. They may have children at home, or may be caregiving for older family members. It can be especially overwhelming for the spouse, according to Glenn Smith, Ph.D., at the Mayo Clinic.

A study by researchers from UCLA recently found that some memories might be able to be restored, especially in early stages of the disease. However, the study was conducted on snails; there is still a long way to go before treatment can be attempted in human subjects. There are several FDA-approved drugs to treat symptoms, but do not treat the disease itself.

A key goal of The National Plan to Address Alzheimer’s Disease includes accelerating efforts to identify early and pre-symptomatic stages of the disease. We’ve previously reported on efforts by states to develop their own plans. Yet, routine cognitive screenings are still not recommended by the U.S. Preventive Services Task Force, even for older adults.

Five percent of five million Alzheimer’s sufferers may not seem like a lot when looking at the population as a whole. However, when reporting on a more personal level, you meet caregivers like Karen Gardner and Allen Vann — who have dedicated their lives to helping families cope with this disease. You soon realize how differently this diagnosis and unmet care needs affect a “typical” family.

One of the executive producers of “Still Alice” is Maria Shriver, whose father, Sargent Shriver, died from the disease. The Washington Post rightfully pointed out that NBC did not disclose either of these facts when Shriver reported on the film for the Nightly News. She is also promoting it on her website. While clearly an important personal issue for her, it’s also a clear conflict of interest.

However, the movie’s national release is a good opportunity for reporters to delve further into issues of “atypical” patients, missed diagnoses, stereotypes and the need for more caregiver support. Find out what’s happening in your community. There are many “Alices” out there whose stories can be told.

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