Kathleen J. Mullen, PhD, is an alumna of the Robert Wood Johnson Foundation Scholars in Health Policy Research program, and an economist and associate director of the RAND Center for Disability Research at the nonprofit, nonpartisan RAND Corporation.

Dementia, a chronic disease characterized by significant impairment of cognitive functioning, afflicts 15 of every 100 Americans over age 70 – and it is their caregivers who are perhaps most familiar with the disease’s effects.

Family members are often the ones who find themselves navigating the complex system of nursing homes, in-home health care, and health insurance (Medicare, Medicaid, and private insurance), all while dealing with heartbreaking changes in the physical and mental functioning of their spouses, siblings, parents or grandparents. Indeed, my own family is struggling to sort through an overwhelming number of options and decisions to help ensure that my 86-year old grandmother receives the best available care now that she is unable to live without daily assistance.

For many families, a significant barrier to that best available care is cost: Caring for someone with dementia is extremely expensive. A recent RAND study, the results of which were published in the New England Journal of Medicine, offers some of the most comprehensive and credible estimates to date of the monetary costs of dementia in the United States. These costs include both out-of-pocket spending and spending by Medicare, Medicaid, and other third parties on nursing home and hospital stays, medical visits, outpatient surgery, home health care, special services (such as outpatient rehabilitation), prescription drugs, dental services, and other needs.

Around the country, print, broadcast and online media outlets are covering the groundbreaking work of Robert Wood Johnson Foundation (RWJF) leaders, scholars, fellows and grantees. Some recent examples:

The Chronicle of Philanthropy named RWJF President and CEO Risa Lavizzo-Mourey, MD, MBA, one of the “Five from the Nonprofit World Who Will Influence Public Policy in 2013.” She was also featured in a profile in the Newark, New Jersey, Star-Ledger, as part of a series profiling “some of the people who make the Garden State special.”

RWJF Senior Communications Officer Linda Wright Moore wrote a piece for Ebony.com about the work of Debbie Chatman Bryant and Ifeanyi Anne Nwabukwu, who were honored last year as RWJF Community Health Leaders for their work to fight cancer. Bryant cares for the underserved in the Low Country of South Carolina, and Nwabukwu helps African immigrant women in the Washington, D.C. area.

John R. Lumpkin, MD, MPH, senior vice president and director of the Health Care Group at RWJF, and Susan Bakewell-Sachs, PhD, RN, program director of the New Jersey Nursing Initiative (NJNI) and interim provost of the College of New Jersey, published a guest editorial in the Newark Star Ledger about NJNI’s work to solve the state’s nurse faculty shortage. Since its launch in 2009, NJNI has supported 61 New Jersey Nursing Scholars, providing tuition and other support while they pursue master’s or doctoral degrees that qualify them for faculty positions. NJNI is a program of RWJF and the New Jersey Chamber of Commerce Foundation.

“I have a lot of experience when patients of mine come and say, ‘I was taking a green pill and now it’s pink. What's going on?’” Aaron Kesselheim, MD, JD, MPH, an RWJF Investigator Award in Health Policy Research recipient, told Reuters. Kesselheim’s new research finds that patients are less likely to take their medication if the color changes, which often happens when they switch from a brand-name to a generic drug. The findings were also covered by the New York Times Well blog, CBS News, and Health Canal, among others. Read more about Kesselheim’s work here and here.

Around the country, print, broadcast and online media outlets are covering the groundbreaking work of Robert Wood Johnson Foundation (RWJF) scholars, fellows and grantees. Some recent examples:

Although losing a sense of smell is associated with the development of Alzheimer’s disease, there is not enough evidence that olfactory identification tests (smell tests) can be a predictor for developing the disease, according to a study co-authored by RWJF/US Department of Veterans Affairs Clinical Scholar Gordon Sun, MD. Medical News Today, WebMD, and BrainPhysics.com are among the outlets to report on the findings.

Patients may not be fully participating in decisions about their health—holding back questions or avoiding challenging their physicians—for fear of being labeled “difficult,” a study led by RWJF Health & Society Scholars alumnus Dominick L. Frosch, PhD, finds. "What's interesting to us is these were mostly Caucasian, highly educated, well-to-do people, and they're talking about these difficulties," Frosch told the San Francisco Chronicle. “It’s difficult to imagine this is easier for people in a less advantageous social position.” Fierce Healthcare also reported on the findings.

The Federation of State Medical Boards recently adopted new guidelines for physicians about social media use and social networking, on the heels of a study led by Clinical Scholar Ryan Greysen, MD, MHS, that finds an increase in reports of doctors not adhering to professional standards online. “Like everyone else, doctors sometimes stumble in their online behaviors and make mistakes in judgment about content they post,” Greysen told Slate. “They think they’re doing nothing wrong but, unfortunately, the disciplinary responses can be a big deal.” Read a press release about the new guidelines. Read more about Greysen’s study.

RWJF Harold Amos Medical Faculty Development Program alumnus Yonas E. Geda, MD, continues to receive media coverage for her study that finds seniors can reduce their risk of developing mild cognitive impairment through a combination of moderate exercise and such mentally stimulating activities as using a computer. Among the outlets to report on the findings: CBS News, MedPage Today [free subscription], Health.com and Consumer Affairs.

By Jason Karlawish, MD, professor of medicine and medical ethics at the University of Pennsylvania, and recipient of a Robert Wood Johnson Foundation Investigator Award in Health Policy Research

Just one year after President Obama signed the National Alzheimer’s Project Act into law, the U.S. is beginning to talk about Alzheimer’s disease. With input from 23 federal departments and agencies, the Department of Health and Human Services has issued the nation’s first National Alzheimer’s Plan, and the President’s budget proposes to increase funding for Alzheimer’s research and care by at least $156 million.

Alzheimer’s disease is now a national problem that we will tackle guided by a plan with five goals. Goal #1 is ambitious—to prevent and treat Alzheimer’s by 2025. The other goals are far reaching. They include detailed proposals to change the delivery of health care for patients and families, evaluate new models of care and housing for people with Alzheimer’s, and to provide services for their caregivers’ health and well-being.

Health care reform is hotly contested, and may even be repealed, but so far, this disease specific expansion of federal interventions and spending has largely escaped the recurrent and bitter partisan disputes over the role of the federal government in solving the nation’s health care problems, and the size of the federal budget and its deficit.

Alzheimer’s may, like other diseases of aging, largely remain free of partisanship at least in part because America is aging. Studies show that the chief risk factor for developing Alzheimer’s is something we can little change: our age. Demography is destiny, and as the number of Americans over 65 steadily grows, so too will the number of Americans with Alzheimer’s.

National action is needed, but as the U.S. is about to dive into tackling the Alzheimer’s problem, it is worth considering a fundamental guide of ethics. Before you decide what to do about something, you have to know what it is, otherwise, your plan may fail. Alzheimer’s disease is called the most common cause of dementia. But what we talk about when we talk about Alzheimer’s disease is changing. How might this changing language impact the success or failure of our national plan?

Here’s a sampling of recent news coverage of the work of Robert Wood Johnson Foundation Scholars and Fellows:

Susan B. Hassmiller, PhD, RN, FAAN, senior adviser for nursing at the Robert Wood Johnson Foundation (RWJF) and director of The Future of Nursing: Campaign for Action, spoke to Advance for Nurses about the Future of Nursing report’s “80 by ‘20” recommendation—a call for 80 percent of nurses to have their BSN by 2020.

Yonas E. Geda, MD, a scholar with the RWJF Harold Amos Medical Faculty Development Program, is the lead author of a study that finds older people whose diets are high in calories are at greater risk for mild cognitive impairment. USA Today, CNN’s The Chart blog and MedPage Today are among the outlets to report on the study.

RWJF Health & Society Scholars alumna Sarah Gollust, PhD, spoke to The Atlantic about perceptions of type 2 diabetes. The media tends to emphasize personal responsibility for the disease, she said, which can stigmatize people and erode public support for treatment. Read a post Gollust wrote for the RWJF Human Capital Blog about public opinion and the fairness of health inequalities.

Funded by a five-year, $1.2 million grant, Kynna Wright-Volel, PhD, RN, FAAN, an assistant professor, pediatric nurse practitioner and RWJF Nurse Faculty Scholar, is launching Project SHAPE LA ™ in coordination with the UCLA School of Nursing and the Los Angeles Unified School District. The coordinated school-health program is designed to increase physical activity among youth in LA County schools, UCLA Today and other outlets report.

Jason Karlawish, MD, recipient of an RWJF Investigator Award in Health Policy Research, guested on NPR’s Talk of the Nation to discuss a study that finds an FDA-approved drug for skin cancer can reduce Alzheimer’s-like symptoms in mice. Learn more about Karlawish’s research, and read a post he wrote for the RWJF Human Capital Blog.

By Jason Karlawish, M.D., professor of medicine and medical ethics at the University of Pennsylvania, and recipient of a Robert Wood Johnson Foundation Investigator Award in Health Policy Research (2008).

Pat Summitt’s announcement that, at the age of 59, she has been diagnosed with dementia caused by Alzheimer’s disease is sad news. Her plan to continue working as the head coach of the eight-time NCAA Division I national championship University of Tennessee Lady Vols basketball team is a shot heard round an aging world.

A person diagnosed with dementia still working? The idea seems bizarre, and yet a big-money college athletic program does not run its coaching staff like a small town volunteer basketball program. The University’s decision to retain her as a coach is an opportunity for society to engage in a vigorous debate about how we will live with cognitive impairment as well as with other impairments associated with chronic diseases common to older adults.

Summitt’s exact story is unusual. Alzheimer’s disease is rare before the 7th decade of life. But the theme of her story is common, and, in the coming decades, it will be even more common.