At a recent weekday matinee showing of the film “Still Alice,” in which Julianne Moore stars as Alice, a Columbia University linguistics professor who develops early-onset Alzheimer’s disease, the theater was crowded, mostly filled with middle-age women. At times it felt like a support group in the dark, with much collective crying at the sadder moments, as we watched Moore’s character slowly slip away from being a confident, independent and smart woman to a child-like, scared version of her earlier self. We witnessed her short-term memory loss, struggling at word retrieval and putting her hair shampoo into the dishwasher. Moore has already won several awards for her portrayal of Alice, and is heavily favored for the best actress Oscar.
Although early-onset Alzheimer’s disease is rare, accounting for only 5 to 10 percent of all Alzheimer’s cases, the challenges faced by the fictional Alice, her husband and adult children are very common, and coming soon to your family — though many of you may already have been impacted by Alzheimer’s disease or another form of dementia.
According to the Alzheimer’s Association, currently 5.2 million people in the United States are living with Alzheimer’s disease, and a new case is diagnosed every 67 seconds. As the baby boomers age, those numbers will increase by 2050 to an astounding 13.8 million people, affecting 1 out of every 3 people over the age of 85. Gives you second thoughts about the traditional Jewish blessing of living to 120, doesn’t it?
And with all those cases comes a high price tag. Because the condition has a long duration and necessitates caregivers — whether family or paid — it is currently the most expensive chronic health condition in the United States. In 2014, it is estimated that the cost of caring for those with Alzheimer’s is $214 billion, and by 2050 that amount will climb to an estimated $1.2 trillion annually, in today’s dollars.
AARP is advocating for more government funding for this public health tsunami. In their January/February 2015 Bulletin, AARP explored the need for increased federal research funding in an article titled “When Will the War on Alzheimer’s Begin?”
Currently, national research funding for Alzheimer’s is $566 million, whereas funding for cancer, heart disease and HIV/AIDS each are well over $1 billion. This lack of funding exists despite the unanimous passage by Congress of the National Alzheimer’s Project Act (NAPA) in 2010. Under NAPA, the secretary of health and human services, or the secretary’s designee, is “responsible for the creation and maintenance of an integrated plan to overcome Alzheimer’s.” Congress specified several goals and objectives to be included in NAPA, but neglected to increase funding for federal research or programs for Alzheimer’s.
Part of NAPA includes the need to optimize care quality and efficiency, and both Medicare and Medicaid are looking to improve health care for people with dementia who are in managed care plans. Studies have shown that a key element is professional training; there needs to be a dementia care specialist for each health plan, and in California, the Alzheimer’s Association is training this group of specialists as part of the Dementia Cal MediConnect project for people who are poor and elderly/disabled and have both Medicare and Medi-Cal.
Jennifer Schlesinger, director of professional training and health care services for the Alzheimer’s Association California Southland Chapter, told me that one of the primary obstacles to quality dementia care in managed care settings is the general failure to recognize the vital role of family caregivers.
She said health care providers often don’t ask who in the family is helping out, and without identifying and then supporting family caregivers, the caregiver can easily become overly stressed and end up in a hospital or nursing home, having a ripple effect on the person with Alzheimer’s, who most often also ends up in a nursing home in this situation. “Dementia is different from most other diseases in that the person impacted is losing cognition and awareness, and in time, totally depends on a caregiver,” Schlesinger said.
Another huge challenge is that only 50 percent of people with Alzheimer’s disease actually receive that diagnosis because of multiple factors, including stigma and overall systematic gaps in dementia screening and treatment. As part of the new annual Medicare Wellness visit, every patient over 65 (and younger if they have an intellectual disability) should be given a very short eight-question screening test, and if that doesn’t happen, family members need to speak up and ask for it.
Early diagnosis is helpful in many ways; the person with Alzheimer’s can be part of their own planning and can make their wishes known while they still can. Family caregivers can take the time to explore different options, including adult day care, respite care and assisted living, along with all the financial and legal ramifications.
Adults with Down syndrome and other intellectual disabilities have a higher risk of developing Alzheimer’s disease at a younger age than the general population, but there has been very little to support those families. New Horizons in North Hills is building a residential home that will specialize in caring for adults with Down syndrome, developmental disabilities and dementia. And the Alzheimer’s Association California Southland Chapter recently received federal money to, among other things, expand the number of support groups and caregiver trainings on behavioral symptoms for individuals with intellectual and developmental disabilities and Alzheimer’s disease.
When a real tsunami wave is coming, an urgent alert goes out to the general public to move to higher ground. There are radio, TV and Twitter alerts, along with blaring sirens. Consider this article your alert, and start planning now how you and your family can move up to a better spot, before the huge waves hits the shore.
Michelle K. Wolf writes a monthly column for the Jewish Journal. Visit her Jews and Special Needs blog at jewishjournal.com/jews_and_special_needs.
