Georgia develops ‘accountability’ dementia plan

This blog post originally appeared on the AHCJ blog. 

Georgia has a new task force targeting Alzheimer’s disease and related dementias. The recently published Georgia Alzheimer’s Disease and Related Dementias State Plan lays out a strategy for addressing the needs of patients in terms of care and prevention, the impact on caregivers, and the costs associated with the disease.

The task force is led by James Bulot, Ph.D., director of Georgia’s Division of Aging Services. According to Bulot, 40 states have dementia plans at various stages. The Georgia plan assesses the risk for citizens in the state and takes inventory of services available to Georgians. It also outlines the importance of finding gaps in resources available on a state level.

Bulot believes the Georgia plan will be different because he’ll hold the task force accountable for progress. Unlike other plans which may be updated every five or 10 years, the Georgia plan will be continually modified to reflect changing scientific knowledge and statistics.

“You’ve got to visit it often,” Bulot said. “We’ll be moving systematically through the plan, scratching things off the list and moving on.”

Public response so far has been positive.

“We’re hearing, ‘it’s about time,’” Bulot said.

Moira Keller, a clinical social worker at Piedmont Healthcare in Atlanta specializing in geriatric care, has seen an increase in cases of dementia for years. For those over the age of 65, Alzheimer’s is the fifth leading cause of death.

Of the Georgia dementia plan, Keller said, “I think it’s wonderful. I think it’s just absolutely necessary because dementia is an epidemic.”

One gap Keller identified was the need for more conversation surrounding Alzheimer’s. Bulot hopes that the statewide plan in Georgia will do just that: raise attention, awareness, and start conversations, not only among the public, but within government agencies.

The plan takes into account resources provided by state agencies, nonprofits, and other organizations. It also details the needs of patients, families, and caregivers, giving agencies a roadmap to how they focus on Alzheimer’s and dementia within their organization.

“Many departments are working together, and you can see an immediate improvement,” Bulot said. “When you get the right individuals at the table, talking about ideas, it will benefit the population as a whole.”

Focus on caregivers

Almost all of Keller’s clients have a form of dementia. She assesses whether they are able to function alone, managing daily activities like eating, getting dressed and paying bills, despite cognitive impairments of the disease. When they can’t, that’s when caregivers come in.

“Families really twist themselves inside out. They retire, quit their jobs, and make so many sacrifices in order to be there for loved ones. That comes at great financial hardship for those families,” Keller said.

For this reason, a major emphasis of the state plan is the support of unpaid caregivers, who provide 90 percent of long term care, according to the CDC and this report from AARP.

This amounts to 17.7 billion hours of care per year, without any compensation. Keller said, “They just want more options for getting a break, because it’s hard work.”

One of the goals of the plan is to “create funding mechanisms to support family caregivers to keep their family member with dementia at home longer.” Support includes providing reimbursement for personal care services, specialized medical supplies, and respite.

The issue of funding will be handled through resource sharing among agencies and maximizing financial resources already available. The task force will also seek out new funding opportunities. According to Bulot, $3 million in additional funding has already been acquired for their initiatives.

The ultimate goal, Bulot said, is to “serve more people, with more efficiency, and achieve better outcomes for Alzheimer’s patients and their families.”

One such efficiency is using volunteer members of the task force. Bulot emphasized that Georgia has no budget for completing dementia initiatives. The plan relies on the work of experts around the state who are passionate about improving the lives of patients and families.

“And it’s impossible to find any family in Georgia or the U.S., or the world, who’s not affected by dementia,” Keller said. “One of the really good things is that [the plan] is going to promote more public conversations about dementia.”

Reporters covering aging and long-term services and supports can compare their state’s plan to others – both overall and by specific category. Your state’s department of aging should be able to tell you how frequently the plan is assessed and revised, what programs are in place, what’s working, what’s not, and which cities or counties are best prepared for the age wave.

If your state is does not have a plan, why not? What are they doing to get ready?

Landing an interview

I have been working on a story about the race for insurance commissioner for a couple of months. Our professor put it on my radar, and I've been hustling after the candidates ever since.

I couldn't quite get ahold of Liz Johnson, who is running in the Democratic primary. At what point does inquiry turn into harassment? In a final attempt, I sent her an email quoting the following post on her Facebook page:

I asked her to let me give her a voice in my article. I thought this was pretty clever. She still hasn't gotten back to me.

Sometimes I whine to my boyfriend that Journalism is haaaaarrrrrd. My article on the insurance commissioner race was one that sparked a lot of this.

Either I'm a student, so I'm not taken seriously enough for an interview, or I'm a big bad journalist, so I'm feared by people who've got something to lose. None of my stories have ever been easy, and one of the hurdles is always landing that interview.

I landed Ralph Hudgens. We had a great conversation lasting about 20 minutes, where he shared with me his ideas about Obamacare and a quick thought about the qualifications of the other candidates, Keith Heard and Liz Johnson.

It was real fascinating stuff. Locking down that interview was a long, arduous process, and the interview came with a minute's notice. Honestly, that added to the excitement of it all. I had been thinking about this story for weeks, so I knew exactly what I wanted to ask. In the final moment, I was ready.

I haven't found the secret to finding people eager to talk. And I think that the best sources are probably those you're willing to work for.



My article was published by Georgia Health News.

Reporting on Medical Issues: Consider the Source

This semester, I've learned a lot about reporting on medical studies. I've become more adept at reading and understanding the studies, and assessing their meaning for public health.

A friend on Facebook shared an article from the Health section of the Inquisitr, which promises to deliver "daily viral news by e-mail" so you'll "never miss the internet's hottest stories!" So as I began to read the article, my Junk Science Detector was fully engaged.

There are quite a few problems with the article, but I'll focus on just two:

1. Misinterpretation of a study
2. A questionable source

Although only one graph was allotted for this study, it was crucial to the article's argument that bras = breast cancer risk. The article states: "Harvard did a study in 1991 that showed greatly increased incidence in breast cancer in those who wear bras over those who don’t." They fail to link us to the study, and for good reason. If they direct us to the study, we might find out that they simplified its findings and extracted meaning that wasn't there.

You don't have to read farther than the abstract to see what the authors of the study found (my emphasis added):

Premenopausal women who do not wear bras had half the risk of breast cancer compared with bra users (P about 0.09), possibly because they are thinner and likely to have smaller breasts. Among bra users, larger cup size was associated with an increased risk of breast cancer (P about 0.026), although the association was found only among postmenopausal women and was accounted for, in part, by obesity. These data suggest that bra cup size (and conceivably mammary gland size) may be a risk factor for breast cancer.

It is never said that those who wear bras are at an increased risk for breast cancer.

The article's only source is the word of "medical anthropologists". While research in medical anthropology contributes greatly to public health initiatives, I personally don't think that Sydney Ross Singer and Soma Grismaijer are qualified to be discussing their supposed medical findings from their research about bra use and cancer risk.

A legitimate journalist would have interviewed additional medical professionals, and hopefully a doctor who agreed with the findings as well as one who disagreed. My guess is that the conclusion would have illuminated a kind of middle ground impact for women.

If you follow the links included in the article, they all circle back to work by Singer and Grismaijer, plus holistic and all-natural health websites.

Without discounting the value in this perspective, I believe it is important for the public to develop a discerning eye when reading so-called health news. Sometimes it's not news. Worse, sometimes it's not based in peer-reviewed research.

These articles serve one purpose: to drive clicks to the website and increase revenue stream. And yes, I realize this post helps them achieve this goal. In the process, the public is subjected to misinformation.

While I don't think that ceasing bra-wearing will be harmful for women, this example shows how easily junk science can go viral and inspire change in the way the public thinks and acts on their health. A more serious consequence would be, for example, a "news article" promoting an anti-vaccine agenda. This is much more dangerous than burning your bra.

Journalists are responsible for the information they report to the public, and for the way we present information to the public. And readers have a personal responsibility to follow the links and get to the source. You'll be better off for it. 

Last Thursday, Dean Davis of Grady College at UGA hosted a panel of journalists to discuss covering trauma. Panelists included CNN’s Jan Winburn, Moni Basu and Tim Crockett, as well as Diana Keough.

Crockett is a hostile environments trainer, and has worked with CNN journalists who venture abroad to report on war and conflict. He’s worked with Basu, who recounted a story from one of her stints in Iraq, in which she fled the base shower camp, rather than staying low in the shower, when a warning siren went off. As she told the story, she looked over at Crockett and acknowledged that her decision to run was counter to his training. He laughed, saying that she made the right choice because she was okay.

Keough shared a story in which she accompanied a minor on an airplane as they headed for the same hospital in Atlanta. She was traveling to cover a story, and he was on his way to see his family, who awaited the outcome of injuries sustained by his sibling in the same accident Keough went to cover. Keough traversed the duties of a reporter and held a caretaker role for this boy, all the while knowing that she should repeatedly identify herself as a journalist for ethical reasons. Still, her act of shepherding the boy to the hospital gained her access to the family and the event, which the parents happily granted her, in gratitude of her role on protecting their son.

“Never forget that you’re a human being first, then a journalist,” Basu said. The panel agreed.

This applied not only to Keough’s story, but to the art of getting the story. Whether you’re writing obits, or interviewing a war veteran or a grieving parent, the key to connecting with their story is maintaining humanity. It makes the difference between stenography and journalism. The panel came to the concensus that the key to getting the story is to listen.

Winburn explained the magic that happens during a breakthrough. Trauma victims have “talking points” that they tell about their experience. The breakthrough happens when, after the talking points come to an end, the journalist continues asking questions and listening to what the person has to say about the experience. Without a reaction of surprise or pity, instead treating the person with dignity and respect, the person being interviewed begins to relax. “You can see it in their eyes,” Winburn said, when they begin to trust you and really open up.

I learned a lot from the panel about what it takes to be a journalist covering trauma. I know that to be able to tell a great story, I will have to learn to listen, keenly and unconditionally. And of course, be a human first.

The event was held in conjunction with the traveling photography exhibit, “The Iconic Image” from The Ochberg Society for Trauma Journalism. The photos document traumatic events in three acts, from the moment the tragedy breaks, through the aftermath of the event. From the assassination of Lee Harvey Oswald, to images of war, to the faces of grieving families.

The exhibit is composed of work by 21 photojournalists exploring major tragedy. The compilation is based on trauma psychiatrist Frank Ochberg’s “Three Acts of Trauma News.” It is curated by Kim Komenich and edited by Deirdre Stoelzle

- See more at: http://www.ochbergsociety.org/ochberg-society-photographers-present-the-iconic-image/#sthash.GIKEAsFx.dpuf

On my first experience as a journalist

When I came to grad school, I entered as a decidedly PR-track student. I thought it would be the perfect way to meld my business interests with my creative writing Bachelors degree. I wanted to specialize in health communication, because I had some insight into the world of health insurance through my previous career.

I came into Health Medical Journalism on the recommendation of a PR professor who I like and admire. I knew nothing about journalism. I didn't know the ins and outs of ethics, such as conflicts of interest, or where to find a story, or how to write an article. Just before the first article assignment was due, I told our professor that this would be my first news story ever. I don't know what I expected her to say, but I wasn't expecting her to brush it off. "It's just like a press release," she said. "You'll be fine." And I was fine.

I had been assigned to Wilkes County, about an hour outside of Athens, GA. I went to Washington, the county seat, with an interview scheduled with the manager of  largest insurance agency in the county. I went to investigate their health insurance sales amidst the Affordable Care Act mandate. I didn't find anything interesting.

So I decided to go into town and see what the real story was. I walked into a cafe on the square and sat down for a cup of coffee. I chatted with a young guy who seemed a bit disconnected from the politics and goings-on of town. Then I started a conversation with the owner of the place, who could tell I wasn't from around there. He talked about the ACA as an enigma. Something the town couldn't quite wrap their minds around. Yet he knew all about the 'Navigator' at the courthouse, just up the square.

Before I reached the courthouse, I stopped into the Tourism office, which shared space with the Chamber of Commerce. The girls in the tourism department were happy to orient me to the town and introduce me to the director of the chamber. He was a lovely guy who was happy to share his unfiltered opinions on town politics, so long as it remained off the record. I was happy to listen.

He encouraged me to speak with his office assistant, Acetra, who had just walked in with her lunch. Lo and behold, she had gotten a policy through the healthcare.gov website, and was also familiar with the local Navigator. She gave me an excellent interview that I saved for an article about the developments of the ACA.

While we were talking, a gentile-looking guy, David Toburen walked in. He seemed to light up the room as everyone in the office greeted him. He sat down with us, and I asked him if he would state his name for the record. I listened to David and Acetra discuss Washington: its charms, its history, its failings.

I found out that David ran a food pantry and thrift store, called God's Marketplace. I asked him if there's anything interesting going on over there. "Here's a story for 'ya," he said. He's opening up a support center for folks who are battling depression, substance abuse, or just plain old poverty. I asked him what kind of mental health resources were available. He said that there were none.

I knew I had my story, and I was ecstatic when he said he'd let me follow him down to the new location of God's Marketplace Support Center.

My visit set me off on a fun investigative journey. I talked with the county health department, the nearest outpatient mental health clinic, and anyone else i could get my hands on.

My first story was born, and published in The News-Reporter of Washington, GA.

I learned valuable lessons in reporting this first story:
1. Be willing to talk to anyone.
2. Learn to ask the right questions.
3. Be willing to sit and wait.
4. Flexibility is key; allow yourself to write a "plan B" story.

I wrote Acetra's story later, and even returned to interview her on camera. I got back in touch with her with David's help.