NIA director Dr. Richard Hodes at the AD Summit

"We are at an exceptional moment scientifically for Alzheimer’s,” declared NIH director Dr. Francis Collins before more than 500 researchers and advocates gathered on campus May 14-15 for the Alzheimer’s Disease Research Summit: Path to Treatment and Prevention. Significant progress has been made, but much more needs to be done, he told the group. “This is not about just celebrating where we’ve come from, but rolling up our sleeves to see where we can go,” he said.

Collins’ remarks came as HHS Secretary Kathleen Sebelius visited the summit to unveil a new National Plan to Address Alzheimer’s Disease. The plan, mandated by the January 2011 National Alzheimer’s Project Act, sets forth 5 goals for Alzheimer’s research, care and services; the first goal is development of effective prevention and treatment approaches for Alzheimer’s disease and related dementias by 2025.
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But for experts like Dr. Joan Teno, professor of health services, policy and practice at Brown University’s Warren Alpert School of Medicine and a 20-year veteran of hospice care, that decision is not only often ambiguously reached, but also is demonstrably harmful to patients, resulting in earlier death and higher rates of infection, especially bed sores.

Speaking to the NIH end-of-life palliative care special interest group on May 17, Teno, an NIA grantee, presented data from recent studies showing how haphazard care is for this population nationally. In Los Angeles County alone, in hospitals only a mile apart, the feeding tube insertion rate varied from 3.3 per 100 to 13.2 per 100 in patients with similar diagnoses.