Science Magazine (August 30, 2018): The Alzheimer’s Gamble: NIH Tries to Turn Billions in New Funding into Treatment for Deadly Brain Disease

Rhiana Kohl has faced many sad surprises in the seven years since her husband, Alfredo Bartolozzi, first showed symptoms of Alzheimer’s disease. But perhaps the biggest shock was finding out that even health care workers often don’t understand this common illness.

During a hospital stay, an X-ray technician didn’t grasp that Bartolozzi couldn’t follow directions. In an emergency room visit, staffers asked factual questions of a stricken man who didn’t know where he was.

And Bartolozzi’s doctors, even after ruling out every other explanation, could not bring themselves to diagnose Alzheimer’s.

That’s why Kohl, who lives in Watertown, advocated for the first-in-the-nation legislation on Alzheimer’s that Governor Charlie Baker signed into law last week. The multifaceted law aims to improve the diagnosis and treatment of an illness that afflicts 120,000 Massachusetts residents and 5.7 million Americans.

“No other state in the country has something like this,” said Daniel C. Zotos of the Alzheimer’s Association.

The legislation requires physicians, physician assistants, and nurses to undergo training in diagnosis, treatment, and care of patients with Alzheimer’s and other forms of dementia, before they can obtain or renew their licenses.

It also requires physicians who have diagnosed Alzheimer’s in a patient to inform a family member or legal representative about the diagnosis.

And it mandates that all hospitals, no later than Oct. 1, 2021, develop and put in practice a plan for recognizing and managing patients with dementia.

Half of Americans with Alzheimer’s disease have not been diagnosed, and half of those with a diagnosis have not been told about it, according to a survey of Medicare beneficiaries, said Zotos, who is director of public policy and advocacy for the association’s Massachusetts/New Hampshire Chapter.…

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