1. Provide the title of your story or series and the names of the journalists involved.
The Vanishing Mind by Gina Kolata and Pam Belluck
2. List date(s) this work was published or aired.
See contest entry.
3. Provide a brief synopsis of the story or stories, including any significant findings.
"The Vanishing Mind" tackled the subject of Alzheimer's with a fresh and unprecedented approach, breaking new ground with reporting about the worldwide struggle to find answers – the breakthroughs, frustrations and setbacks in diagnosis, care giving and treatment of this terrifying illness that is growing so rapidly it is expected to afflict nearly 100 million by 2050.The stories describe a watershed year in Alzheimer's disease research and in understanding the needs of people with the disease and their caregivers. They include a package of stories from a remote region of Colombia that is home to the world's largest family to experience Alzheimer's. A genetic mutation causes members of this sprawling extended family to develop dementia at a shockingly young age, in their 40's, and our stories described the family's struggle and the potentially groundbreaking research that will test drugs on family members to see if Alzheimer's can be prevented. The series includes several articles examining advances that could alter the course of Alzheimer's treatment : a new brain scan that shows Alzheimer's plaque in the brains of living patients, a new kind of drug test, and a unique and productive collaboration between the federal government, universities, and companies to speed progress on Alzheimer's disease. And the series takes an in-depth look at the consequences of Alzheimer's for individuals and society. We examine the ethical dilemmas for people deciding whether to get tested for Alzheimer's and told they are likely to develop it, when so little treatment currently exists. We write about the one of the first signs of Alzheimer's, problems with handling money and its often- devastating effects. We travel to South Korea, to explore that government's remarkable "war on dementia" – a campaign that is yanking a highly stigmatized disease into the spotlight, urging people to get diagnosed at new neighborhood dementia centers, training children to become caregivers, and creating a "Dementia Experience Center" so healthy people can experience what Alzheimer's is like. And we delve into the science of care giving – how new approaches like creating positive emotional experiences for patients and manipulating the design of a room or building can alleviate some of the most troublesome behavioral symptoms of Alzheimer's. In addition to the reported and written pieces, we also produced two multimedia projects, from Colombia and South Korea. Alzheimer's is a story of scientific mystery and human pathos, and, by combining writing, images, audio, original music and video, the projects provided a powerfully vivid way to convey the emotional toll of the disease.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
The series required a lot of dogged reporting: spending time with patients and caregivers, discovering innovative research, skeptically evaluating the complex science, gaining access to intimate family struggles. The Internet was invaluable for finding medical articles and for gleaning data from web sites of researchers and the National Institutes of Health. The work in Colombia and South Korea required tremendous time and effort. Finding and identifying the patients and families, and earning the trust of researchers was difficult. Navigating cultural and linguistic barriers, and, in Colombia, security concerns in a region scarred by drugs and violence, was especially challenging. We overcame many hurdles as we sought to make people feel comfortable opening up about something as sensitive as dementia, which, in these countries as in much of the world, is a subject of stigma and superstition.
5. Explain types of human sources used.
We interviewed and observed researchers, patients, family members, scientific test subjects, physicians, and caregivers – those nearby, like the brain scan discoverer in Philadelphia and those as far away as Medellin and Seoul.
6. Results (if any).
The series provided an unprecedented look at a horrific disease on the cusp of change. For decades, Alzheimer_s research has been almost stagnant, with little new or promising on the horizon. This year, that picture was altered and the series showed how and why and what it might mean. The series generated extraordinary interest among readers, and helped the change the national conversation about Alzheimer's. Scientists and doctors say it is being much discussed among families and caregivers, and at conferences of researchers, drug company representatives, and federal officials. Dr. John Morris, a renowned Alzheimer's researcher at Washington University in St. Louis and head of a large international study called the Dominantly Inherited Alzheimer Network, said that as a result of the series, he has received numerous inquiries from people interested in participating in research. According to Gabrielle Strobel, managing editor of the Alzheimer Research Forum, an independent clearinghouse for information about Alzheimer's, the series, particularly the story on Alzheimer's in Korea, was discussed at a convention of the Coalition Against Major Diseases, an independent public/private partnership that includes the National Institutes of Health, five organizations that represent patients, and 12 major pharmaceutical companies, and is advised by the Food and Drug Administration. Ms. Strobel said that speakers at the meeting "cited 'that recent NYT story about how Korea does it' while bemoaning that the U.S. does not have a coherent strategy. Thanks for showing this country what can be done!" And in December, Congress unanimously passed, and President Obama signed, the National Alzheimer's Project Act to create a national strategic plan to fight Alzheimer's. Its goal, the legislation says, is to "accelerate both the complexity and the humanity, the development of treatments that would prevent, halt or reverse the course of Alzheimer's" and "improve the early diagnosis of Alzheimer's disease and coordination of the care and treatment of citizens with Alzheimer's." The act's bipartisan sponsors said the New York Times's series helped build a groundswell of support for the legislation. "The series that The New York Times did helped shine a spotlight on the implications of Alzheimer's," said one of the sponsors, Senator Susan Collins, a Republican from Maine. "It was really very important in helping heighten awareness of the devastating implications of this disease." Senator Collins said she had been trying for years to get her colleagues to focus on Alzheimer's. "It's been difficult to build a critical mass of advocates for Alzheimer's disease," she said. "Series like yours make such a difference." Another bill sponsor, Rep. Edward Markey, a Massachusetts Democrat, said, "You guys have done a great job" in "helping bring people along so they can understand the magnitude of this." He added: "Something has happened with this issue over the last year. It's getting a lot more attention."
7. Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
We are continuing to follow the development of the national strategic plan to fight Alzheimer's disease. We are also following the progress of the research in Colombia and the progress in the effort to develop effective drugs and to identify biological markers that show up in the brain long before a person develops dementia symptoms.
8. Advice to other journalists planning a similar story or project.
N/A