Alzheimer's Foundation of America Releases Recommendations for National Plan to Defeat Brain Disorder, Urges 'No Time to Waste'

Entitled "No Time to Waste," the report urges a "bold but practical" approach and calls for formulating solutions within—as well as outside of—current government programs to ultimately "defeat" Alzheimer's disease.  

AFA's recommendations for research, clinical care and long-term care come as national experts are examining what to include in an "integrated national plan" as mandated under the new National Alzheimer's Project Act (NAPA), and as the incidence of the brain disorder in the United States is expected to explode by mid-century.

To effect long-lasting change, the report urges wide-scale public awareness campaigns, including messaging to drive earlier detection and to "shift the focus from fear to acceptance of the disease."

Other calls for action include: a substantial investment in research toward the prevention, treatment, care and cure of Alzheimer's disease; additional dementia training and reimbursement for primary care clinicians; and greater training and support for family caregivers of all demographics across the continuum of care.

"NAPA is a once-in-a-lifetime opportunity to change the conversation about this devastating illness—but we must do it right," said Eric J. Hall, AFA's founding president and CEO and the report's author.

"Trails have been blazed in other countries, and it is essential for our nation to catch up and learn from best practices. Countless American families are depending on it…depending on us. There is no time to waste," added Hall, a member of the Advisory Council on Research, Care and Services, which was recently formed to advise federal officials on the development of a national strategy.

The report incorporates AFA's own beliefs and feedback shared with AFA by its 1,600 member organizations, family and professional caregivers, and experts over the past few months.

It noted that the United States at a national level falls behind the curve of seven countries and more than 25 states in the nation that already have Alzheimer's disease plans in place, and it repeated earlier calls for an international meeting by next June to address the global epidemic.

Among the most pressing issues, AFA is urging $1.4 billion at a minimum in the President's proposed FY 2013 budget—an increase of at least $300 million from FY 2011—for research at the National Institute on Aging into the prevention, treatment and cure of Alzheimer's disease, as well as an increased focus on clinical research, such as safety issues, non-pharmacological behavioral interventions and end-of-life care.  

Also of high priority, AFA offers multiple strategies to advance earlier detection of memory problems and its resulting medical and practical benefits—the driving force behind AFA's annual National Memory Screening Day held each November. Research shows that general practitioners miss about half of all dementia cases.

First, AFA is calling for Administration support of several public awareness campaigns, including signs and symptoms of cognitive problems; screening, diagnosis and treatment by clinicians; and clinical trial recruitment for research, especially among ethnic minorities.

In addition, AFA said the success achieved in including "detection of any cognitive impairment" in the new Medicare Annual Wellness Exam needs to go a step further by including a cognitive screening as part of the visit.

Also to help with proper detection and ongoing quality care, the report urges the Centers for Medicare and Medicaid (CMS) to require all healthcare professionals who treat persons with Alzheimer's disease to have certification and training in geriatrics and/or dementia. Training must take into account that people under age 65—even as young as in their 30's—can have Alzheimer's disease as well (known as young-onset or early onset).  

In addition, AFA recommends multiple solutions to help reduce the emotional and financial toll on family caregivers, who provide more than $200 billion annually in unpaid care. The strategies include tax credits for individuals with substantial long-term care needs or for their family caregivers; Medicare and Medicaid coverage for adult day and respite services; and specific support for teens and young adults who may be helping with care.

"We recognize our government's tough financial situation right now; however, any budget solutions should not come about at the expense of Americans with high-cost chronic illnesses like Alzheimer's disease," Hall said.

Alzheimer's disease, which results in loss of memory and other intellectual functions, currently affects more than 5.1 million Americans and is the sixth leading cause of death. With advanced age the greatest risk factor for the disease, the incidence doubles every five years after age 65.