When public health graduate David Troxel first began working with Alzheimer’s Disease in the 1980’s, he often received quizzical looks and the question: “What’s Alzheimer’s Disease?”
Experts say last month’s announcement of the country’s first national Alzheimer’s plan was important for reasons far beyond its bold timeline to eradicate the disease by 2025. The true magnitude of the effort, they say, is how it will help advance understanding of the disease and promote more compassionate care for Alzheimer’s sufferers.
“Historically, the focus has been on a cure for tomorrow,” says Rachel Main, memory care and life enrichment director for the Alameda-based Elder Care Alliance. “We need to focus on a life worth living today.”
This article is one in an occasional series on aging with dignity, independent living and public policy that affects both. For a complete archive of the articles, click here.
The Obama administration’s wide-ranging plan targeting Alzheimer’s – which affects more than 5 million Americans – will promote scientific collaboration and fund additional research with nearly $300 million in new funding over the next two years.
Yet it’s the improved connection between Alzheimer’s patients, their families, and society that many consider the initiative’s true promise.
“There’s still a lot of people who know very little about this disease,” says Michelle Johnston, regional director for the national Alzheimer’s Association Greater Sacramento office.
Fearing a mysterious, shadowy disease that affects memory and communication skills – the traits most closely identified with personality – friends and family members often distance themselves from Alzheimer’s sufferers. And it’s precisely this isolation that compounds its effects.
“Instead of focusing on the loss, focus on the strengths and abilities that remain,” says Main. “What still turns mom on?”
Slowly, Americans are learning about the disease, either through personal experience or stories like famed women’s college basketball coach Pat Summitt. Retiring after 38 years at Tennessee and last year’s diagnosis of early onset Alzheimer’s at age 59, Summitt has established a foundation to promote further research and awareness of the disease.
Donna Mastronarde was devastated when her mother was diagnosed with Alzheimer’s more than a decade ago, helpless as the former nurse slowly lost her well-honed mental faculties.
Encouraged by Main to “be where they are,” Mastronarde and her four siblings shifted their expectations, and found a new way to communicate with their mom. Mastronarde began by asking her mother to define simple words, such as “nest.”
“A pleasant place to be,” replied her mother.
Rather than filtering Alzheimer’s through the prism of mental decay, her children began to see their mom in an entirely new way: a simple, elegant, often beautiful communicator.
“Pure poetry,” Mastronarde called it.
Eventually, the mother-daughter collaboration spawned two books of poetry illustrated by Mastronarde’s younger sister.
“The research shows that if people get that kind of support they have better outcomes and lower stress,” says Johnston, citing educational programs, conferences, individual care consultations, and other resources.
After more than 25 years in the field, Troxel is now an internationally-recognized Alzheimer’s expert and hosts the website HelpForAlzheimersFamilies.com.
Physicians battered by the overwhelming demands of patients and insurance companies can have a limited understanding of the disorder, sometimes mistaking it for normal aging. Or they may misdiagnose the disease altogether, which can actually be a thyroid problem, vitamin deficiency, even depression.
Alzheimer’s is only one disease under the “dementia” umbrella that includes vascular dementia and similar disorders.
Troxel says doctors sometimes avoid upsetting families with an Alzheimer’s diagnosis – which simply hurts the patient.
The quicker families receive an Alzheimer’s diagnosis, says Johnston, the sooner supports can be put into place to help.
She particularly laments the quick fix sought by too many physicians.
“Many of them are quick to prescribe medication when they’re dealing with a challenging issue rather than what kind of behavioral interventions might we be able to take,” she says.
Troxel cites another problem with Alzheimer’s prescriptions.
“Research has shown these drugs don’t work very well and have tremendous side effects,” he says.
Immediately after the New Year, President Obama signed into law a bill passed unanimously by Congress – the National Alzheimer’s Project Act (NAPA).
With it came the Advisory Council on Alzheimer’s Research Care and $156 million in funding. The National Institutes of Health added $50 million more in research capital, with another $80 coming next year.
With California’s rapidly aging population, finding solutions to the disease is becoming more critical each year. California led the nation in Alzheimer’s-related deaths in 2007 with nearly 8,500. In 2008, the state had 600,000 cases of Alzheimer’s. By 2030, estimates are that 1.2 million Californians will have the disease. Patients of Latino and Asian-Pacific Island descent are expected to triple.
On the forefront of many progressive health-related initiatives in the 1970s and 1980s, California in 1984 launched ten California Alzheimer’s Disease Centers (CADCs) at state medical schools.
“We started as the most powerful research state in the country,” says Dr. Bruce Miller, director and principal investigator of the San Francisco CADC, headquartered at the University of California San Francisco. Yet Miller and fellow researchers watched as funding cuts in the past five years slashed Alzheimer’s funding in half.
So, Miller is hopeful about the new plan.
“I believe California has the best Alzhemier’s research in the world,” he says. “To suddenly hear there is going to be a major effort to stop that diminished funding is great.”
Federal officials have been careful to call the Obama initiative a national plan – rather than a federal government effort – and have hyped its public-private collaborations.
Major research next year will target the remote mountain area of Antioquia, Colombia, where nearly all of its residents will contract Alzheimer’s by age 45. Funds for the study are provided by the Banner Alzheimer’s Foundation in Phoenix, Arizona, the federal National Institutes of Health, and California-based Genentech, owned by the Swiss pharmaceutical firm Roche.
“I think hundreds of projects will come out of this funding for sure,” says Miller. “It will only improve an already collaborative effort.”
Until that breakthrough treatment arrives, however, Alzheimer’s advocates hope that along with new awareness of Alzheimer’s come new care options – many of which harness the power of music, poetry, and art.
Troxel shares this vision for the years leading up to 2025.
“I hope that physicians encourage patients to volunteer at the local animal shelter, and practice their piano,” says Troxel, “and do what they can to keep themselves physically, socially and intellectually active so that Alzheimer’s becomes a more manageable condition.”
At the Library of Congress in May, country music legend Glen Campbell performed in concert and screened a preview of a film documenting his farewell tour – and his life with Alzheimer’s.
“We’ve seen music as a form of therapy on this tour. He seems to be happier, to do better with his memory,” Campbell’s daughter Ashley told the crowd. “Happiness is the non-medical medicine.”
The lyrics for Campbell’s opening song on his 2011 album “Ghost on the Canvas” offer insight into the world of many Alzheimer’s patients.
Some days I’m so confused, Lord
My past gets in my way
I need the ones I love, Lord
More and more each day
As perceptions of Alzheimer’s and aging evolve, experts see surprising freedoms coming with old age. Instead of being squeezed by powerful cultural expectations of youth, older adults are suddenly given the permission they’ve wanted an entire lifetime.
“They’re free to say what they want,” says Main. “And often it’s insightful and beautiful.”