Providing context for dementia studies is important

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic editor on aging. Her work has appeared in NextAvenue.com, Journal of Active Aging, Cancer Today, Kaiser Health News, the Connecticut Health I-Team and other outlets. She is a senior fellow at the Center for Health Policy and Media Engagement at George Washington University and co-produces the HealthCetera podcast.

Unless you have just emerged from winter hibernation it’s hard to miss the increasingly grim projections about of Alzheimer’s disease and dementia. The latest comes from a RAND study, published in the April 4 New England Journal of Medicine. Researchers predict that the costs of caring for those with dementia will double by 2040, as more baby boomers age into the target population.  A team led by Michael Hurd of the Center for the Study of Aging, at RAND, concluded “our estimate places dementia among the diseases that are the most costly to society.”

Researchers estimated that some 4.1 million older adults will develop dementia by 2040; a lower figure than that of the Alzheimer’s Association, who included people with less severe cognitive problems in their forecast. Data from two major studies, the Health and Retirement Study (HRS) a nationally representative longitudinal survey of adults 51+, and Aging, Demographics, and Memory Study (ADAMS), a nationally representative study of dementia, were analyzed. Co-morbid conditions such as diabetes were controlled for, providing a truer portrait of dementia-related costs.

For 2010, there were an estimated 14.7 percent of people with dementia age 70 or older in the United States. The annual population cost was $109 billion for market-based clinical care, reaching as high as $215 billion when the estimated costs of informal care was included. That works out to $41,000 to $56,000 per case each year. The majority of the expenses – 75 percent to 84 percent – were for nursing home care, and formal and informal caregiving at home.

Assuming prevalence rates and costs per person remain constant, the researchers concluded that by 2040,  ”our estimates suggest that these costs will more than double because of the aging of the population. Although the ability to pay these costs will be ameliorated somewhat by a growing population, they are still expected to increase by 79% when calculated per adult.”

Of course this made front page news throughout the country. Dementia is a topic with such enormous impact on patients, families, care delivery, housing, the economy, quality of life, the health care workforce, and health policy, that if you haven’t reported on it yet, you probably will. A quick review showed that most of the first-day stories about this study and last month’s Alzheimer’s Association report were pretty straightforward. Making your reporting stand out from the crowd requires a little creativity.

Some stories included different angles to frame the issue in a context that might be easier for readers to relate to. Numbers like $215 billion, or 9.8 million people are difficult for many to grasp.  So describing the problem on a community level, city- or county-wide basis helps the audience make some sense of big numbers.

The Associated Press offered some context on the issue by focusing on care providers. This USA Today photo really got my attention by using a strong visual as a great introduction. Then there are the policy angles.

The National Alzheimer’s Project Act of 2011 mandates that the Department of Health and Human Services develop a national plan prioritizing programs to improve health outcomes of people with Alzheimer’s and related dementias and alleviate the financial burden on individuals, families, and society.  The Alzheimer’s Association has a good synopsis of the legislation. The Obama administration this week kicked off an ambitious project to map the human brain in the hopes of finding more genetic clues to dementia and Parkinson’s disease. What are researchers in your area up to? See if local academic institutions or teaching hospitals are conducting studies.

The Aging Core topic area has numerous resource links that can lead you to sources and ideas for dementia articles, as well as data sources which quantify the immense number of people affected. This tip sheet offers lots of background and resources on dementia.

Do you have a creative approach to covering dementia that’s been successful? Share it with your colleagues with a contribution to the “How I Did it” or “Shared Wisdom” section.  You can reach me at liz@healthjournalism.org.

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