Reporting on Alzheimer’s toll in Southwest Florida

It takes little more than a back-of-the-napkin calculation to get an idea of just how much of a problem Southwest Florida might have with Alzheimer’s disease, an affliction whose highest known risk factor is age.

The eight-county region is home to about 480,000 people 65 and older, about 29 percent of the population – one of the highest rates in Florida and twice the national average. Alzheimer’s, the most common form of dementia, affects one in nine seniors over the age of 65. Experts here estimate that between 40,000 and 60,000 people may already have the disease. And, they say, an aging Baby Boom generation means things are about to get much worse.

It’s a big story for this area. So we wanted to know, in as much detail as possible, how much the disease is costing residents and the region’s health care providers. At the same time, we wanted to find people willing to share stories about how the disease has affected their families.

After five months of reporting and researching, photographer-videographer Amanda Inscore and I published our two-day look at Alzheimer’s disease in Southwest Florida. The series included multiple interviews with families and caregivers, charts on how much the disease is costing patients, and interviews with Alzheimer’s experts about the need for more resources to treat the disease.

At the outset of this project, I had no idea how much data I would actually find on medical costs and expenditures. I knew Florida had broad open records laws, but medical privacy rules were usually a big barrier to getting information about specific patients.

I also worried that families and caregivers would be reluctant to speak candidly about a disease that can be so personally devastating.

I believe we were able to do both successfully. These are some of the things I learned along the way:

• Find out what kind of data and health records are kept by different government agencies, and talk to the people responsible for keeping it. This seems like something of a no-brainer but, when possible, I’d suggest talking to the government data analysts to find out what kind of information is stored and is part of the public record. These people usually know much more than an agency’s media officers about what’s available. By doing this, I was able to find out how much the region’s hospital and clinics had charged for outpatient and inpatient medical procedures on patients known to have Alzheimer’s disease, Medicaid spending on patients with Alzheimer’s disease, and even the zip codes of Alzheimer’s patients who had died over the last decade.

• Similarly, Florida keeps good records on its nursing homes, allowing me to find out how much they charge, if they are staffed specifically to care for Alzheimer’s patients and if they accept Medicaid as payments. I eventually compiled enough information for our data experts here to build a searchable database/map of each of the nursing homes in our region. I added Medicare rating data for each. 

• Know your ICD-9 (soon to be ICD-10) codes. These are the medical coding and billing numbers that correspond with a given diagnosis. It was useful for me in seeking public records on incidents of a given ICD code as a primary or secondary diagnosis. By doing this, I was able to seek records showing why Alzheimer’s patients were showing up at the region’s busiest ERs (infections and broken bones from falls and other accidents, most commonly).

• Luckily, our region’s largest hospital operator is publicly operated. That meant I could use the state’s open records law to ask for many non-identifiable records about patients. This allowed us to get the ER data on Alzheimer’s patients, for example, and to determine how much Medicare was paying for them when they received treatment.

• Keep all your data in one place. I created an Excel file with multiple tabs for easy reference. If something needs to be changed or updated, do it in this file. I would also suggest keeping your editors and graphics people up to speed on the data as you receive it. I sent memos to them at least once a month to let them know what kind of information I was finding and how that data might be best illustrated.

• Look to the experts. The Alzheimer’s Association has a wealth of information about Alzheimer’s disease, the cost of treating it and the disease’s impact on caregivers. The local Alzheimer’s groups were able connect us with some of the families we interviewed for the project. Florida Alzheimer’s experts also provided needed help in interpreting some of the data I received from government agencies.

• We also appealed directly to our readers to find sources for our stories. We were inundated with replies from people wanting to talk about how the disease had affected their families.

• Spend time with your sources. It takes time to build up trust and familiarity with people who are sharing intimate details with you. That sometimes means spending hours with people you’re interviewing and making multiple trips to their homes. In some cases, I spent time with them alone, with no cameras. Other times, our photographer-videographer went alone just to capture them in their everyday lives.

• Even when you think you have enough sources, I would advise reporters to keep looking for more if they are able. Some of the most compelling stories came from families I met in the final weeks of reporting. I can’t imagine the project without their voices.

We plan to continue our coverage of Alzheimer’s disease in Southwest Florida throughout the year as we find new stories. Our goal is to further the community’s understanding of this disease and, if possible, help find ways to improve the way Alzheimer’s patients and their families receive care.

I hope this information has been helpful for anyone working on similar projects. I can be reached at fgluck@news-press.com.