Alzheimer's Disease Education and Referral Center

NIA, grantees focus on Alzheimer’s recruitment, policy issues at Health Affairs forum

May 16, 2014
Dr. Laurie Ryan, chief of the Dementias of Aging branch in NIA's Division of Neuroscience

NIA's Dr. Laurie Ryan discusses clinical trials recruitment at the Health Affairs forum.

The many challenges and possible solutions to “the long reach of Alzheimer’s disease,” the theme of the April 2014 issue of Health Affairs, were highlighted at an April 9 briefing in Washington, DC. NIA staff and several NIA grantees contributed articles to the issue and were featured at a health policy forum hosted by the journal.

NIA Director Dr. Richard Hodes, the keynote speaker at the forum, discussed “real excitement and hope” in the research arena, pointing to scientific opportunities emerging in the study of a very complex disorder. Despite the daunting growth of the aging population and cost of Alzheimer’s care, “we’re not limited by ideas or science,” he said.

He featured the NIH-hosted 2012 Alzheimer’s Disease Research Summit and the launch of NIH-supported initiatives and groundbreaking studies, with increased funds for research. These include imaging and fluid biomarker studies to detect onset and track progression of the disease, large-scale sequencing to identify genes that play a role in risk for or protection against Alzheimer’s, and the first-ever clinical trials seeking ways to prevent Alzheimer’s in individuals at high risk for developing the disease. Scientists will be looking to the next NIH-hosted Alzheimer’s research summit, planned for February 2015, to help maintain the focus on the most promising approaches and new ideas, he noted.

Dr. Laurie Ryan, chief of the Dementias of Aging branch in NIA’s Division of Neuroscience, gave a brief overview of Obstacles and Opportunities in Alzheimer’s Clinical Trials Recruitment. “There’s a huge need for research participants,” she said, as about 150 trials funded by NIH and others are seeking more than 70,000 volunteers. Fulfilling this need may involve bridging gaps between primary care providers and researchers to make it easier to inform patients about participating in research; connecting patient registries; accommodating participant and caregiver needs such as having at-home research visits; and building trust in the communities that researchers serve, Dr. Ryan said.

NIA grantees discussed a variety of topics, including those related to ethics, recruitment of diverse populations, models of support for caregivers, and clinical care:

  • Dr. Jason Karlawish, University of Pennsylvania, Philadelphia, spoke of the ethical dilemmas faced by Alzheimer’s researchers, caregivers, and patients, including labeling cognitively normal patients as possibly having Alzheimer’s. He highlighted the need for society in general to prepare for “the brain at risk,” including educating the financial services industry on how to advise clients who have trouble managing money.
  • Dr. Lisa L. Barnes, Rush University Medical Center, Chicago, urged researchers to build relationships with the African American community before seeking trial volunteers. Addressing concerns directly—such as a legacy of mistrust due to past abuses by medical researchers or simply a lack of transportation—is likely to increase minority participation in clinical trials.
  • Dr. Mary S. Mittelman, New York University, New York City, gave an overview of a psychosocial intervention for dementia caregivers, replicated successfully in Minnesota, that reduces caregiver stress and depression. The intervention includes several weeks of training and counseling for caregivers.
  • Dr. Christopher M. Callahan, Indiana University, Indianapolis, discussed a successful, field-tested model of Alzheimer’s care that integrates medical and hands-on care in an affordable way. Care managers play a critical role.

Abstracts from the April issue of Health Affairs are currently available to non-subscribers in the journal's table of contents. You can also view a video of the April 9 forum.

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