Just try to watch the first two minutes of “Alzheimer’s: Every Minute Counts” without feeling a sense of dread. With a montage of panicked caregivers calling for help, interlaced with startling projections from experts, the opener to the one-hour PBS special paints a grim picture of the burgeoning AD epidemic in the United States. “I’m shocked that people are not panicked about what this disease is going to do to their country or to their families,” proclaims Rudolph Tanzi of Massachusetts General Hospital in Charlestown.

The documentary, directed and produced by filmmaker and journalist Elizabeth Arledge in collaboration with Twin Cities PBS, draws upon personal accounts of people with AD and their caregivers, as well as the opinions of researchers, doctors, economists, and politicians, to illustrate the burden of AD in financial, emotional, and social terms. The film sounds a battle cry against the disease and calls for dramatic increases in funding to find effective treatments.

Daisy Duarte must help her mother, Sonia, eat breakfast.

The documentary uses a handful of personal stories to illustrate the myriad challenges caregivers and people with AD face. A striking heroine is Daisy Duarte, 45. She takes care of her mother, Sonia, who has reached the end stages of the disease. Opting to care for Sonia at home rather than place her in an assisted living facility, Duarte had to close her sports bar and live off her mother’s small pension. What’s worse, Duarte discovers that, like her mother, she carries a familial AD mutation that means she will develop the disease as well. Viewers look on as Duarte and her declining mother visit Washington University neurologist Beau Ances in St. Louis. Duarte join a clinical trial, hoping that even if the trial does not spare her from her mother’s fate, it might help others like her in the future. She travels to Washington, D.C., where she meets with members of Congress to advocate for increased funding.

Other personal stories highlight the high cost of institutional memory care. In the sun-drenched retiree haven of Florida, assisted living facilities that specialize in memory care are big business. Medicaid often fails to cover stays in the nicer locales, leaving adult children to pick up the tab or face the excruciating choice of caring for their parent at home or transferring them into a lower-quality facility. New Hampshire, also a state with a large aging population, faces a different problem: Nursing homes are few and far between, due in part to state restrictions on building more of them. Most people with AD in this northern state live at home, many alone, scattered across isolated villages. Six in 10 people with AD will wander away from their homes at some point—a risk during New Hampshire’s cold winters.

The documentary visits an emergency room, where doctors and nurses describe “granny dumping,” when overwhelmed caregivers drop off their loved ones. Unable to tell the staff where they are from, these abandoned elders sometimes end up staying in the hospital for weeks, costing hundreds of thousands of dollars.

Intermixed with emotional stories, experts share troubling facts. Matthew Baumgart of the Alzheimer’s Association notes that one in five Medicare dollars goes toward dementia-related care, a ratio projected to triple in the coming years. He adds that since 2000, deaths related to AD have gone up by 71 percent, while death rates fell for other major diseases. AD incidence is dropping in the U.S. and other wealthy countries (Feb 2016 news); still, experts expect absolute numbers to rise as baby boomers age.

The film calls for massive increases in government spending to tackle the disease, pointing out that these costs will pale in comparison to the financial and emotional toll of not finding a treatment. As part of the National Alzeimer’s Project Act, U.S. AD research has risen from just below $500 million, where it stood for many years, to $1.26 billion in fiscal year 2017 (Jul 201 news). 

At Home Senior Care provided funding for the film, as did the Margaret A. Cargill Foundation, the Helen Daniels Bader Fund, the Ray and Dagmar Dolby Family Fund, Charles M. Denny, Jr., and Ellie Crosby—The Crosswols Foundation. Project partners included the Alzheimer’s Association and Dementia Friendly America.—Jessica Shugart

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  1. Unfortunately, federal research funding for Alzheimer's disease and other forms of dementia has not yet risen to the $1.26 billion level mentioned in this article. According to an NIH report, Fiscal Year 2016 expenditures for "Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD)" research were expected to be $991 million. While the U.S. House Committee on Appropriations has recommended a $350 million increase in Fiscal Year 2017, and its Senate counterpart has recommended a $400 million increase, both those proposals are stalled due to the continuing resolution (CR) that Congress passed late last year. The CR freezes federal spending at FY16 levels until at least late April. If Congress fails to finish work on the FY17 budget in April, the delay will be extended. Worse yet, some in Congress want a full-year CR, which effectively would mean FY16 funding levels would persist until at least FY 18. Barring some unforeseen intervention, this would cause annual NIH research funding for Alzheimer's disease and other forms of dementia to remain stagnated at $991 million—far below the amount congressional appropriators want to provide and that this article prematurely asserted to be secured.

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References

News Citations

  1. Falling Dementia Rates in U.S. and Europe Sharpen Focus on Lifestyle
  2. House Committee Votes to Boost AD Research Dollars

External Citations

  1. Alzheimer’s: Every Minute Counts

Further Reading

No Available Further Reading