It’s possible the deaths of famous people bring as much attention to Alzheimer’s disease as all the purple ribbons of November. The most recent such celebrity death was that of Tom Magliozzi, 77, co-star of National Public Radio’s “Car Talk.”
In recent weeks, Julianne Moore’s Academy Award nomination for Best Actress in “Still Alice” has brought more attention to early-onset Alzheimer’s.
These cultural cues have increased awareness of the disease, and it’s a good time to recognize those who support people with dementia. Demand for caregivers is rising, and in Georgia, the private sector is responding to the lack of options.
In 2013, 15.5 million caregivers provided support for people with Alzheimer’s disease outside the health care system and without pay. According to the Alzheimer’s Association, someone in the United States develops the disease every 67 seconds, and this rate will double by 2050. The number of caregivers will have to increase at the same rate.
An estimated 120,000 people in Georgia are living with Alzheimer’s, a figure that’s expected to rise to 160,000 by 2025.
Bad news at the doctor’s office will transform more spouses, adult children and siblings into caregivers. They will need help. Sheryl Dornblaser is one person who wants to help.
She opened one of these centers in the Atlanta suburb of Lawrenceville last year. And she knew what she was getting into: Both her parents developed Alzheimer’s late in their lives, and Dornblaser looked after them for 16 years.
“Financially and emotionally, it consumes the entire family, not just the person with the disease,” said Dornblaser. “It’s very, very difficult to watch your loved one slowly, each day, disappear into their own world of Alzheimer’s.”
After years of caring for her mother in the memory care unit of an assisted living facility, Dornblaser knew she could handle the rigors of Alzheimer’s care and find joy in the work.
“I realized while I was in the memory unit that I loved being there with the people with Alzheimer’s — I enjoyed them,” Dornblaser said. “I thought, ‘Wow, you know, this is something I should do,’ and then the day care came to mind.”
Beginning can be tough
In 2013, Dornblaser’s idea started moving toward reality and she named her business Priscilla’s Cottage after her mother, Priscilla.
Dornblaser didn’t know how many customers to expect when Priscilla’s Cottage finally opened its doors in June 2014, but she didn’t guess it would be zero. The debut of the business fell flat, which came as a shock.
As months passed without new clients, Dornblaser began to worry that she’d done something wrong. She wondered whether anyone even knew her business existed.
In fact, Dornblaser had launched herself into a zone that not much is heard about — because not much is said about it. People tend to avoid discussing responses to Alzheimer’s until the subject becomes unavoidable.
There’s a good reason for the title that Roz Chast picked for her bestselling memoir about her parents’ decline, dementia and death: “Can’t We Talk About Something More Pleasant?”
“Think about the number of books you see at the library or bookstore in the child care section — usually there are many, if not hundreds,” said Anne Glass, a professor of gerontology at the University of Georgia. “But on caring for older adults there might only be one or two, or part of one shelf.”
With her initial struggles, Dornblaser soon discovered that without connections to adult care referral services, her new venture might fail to take off. Networking became her full-time job.
She started by listing Priscilla’s Cottage on the Alzheimer’s Association’s community resource finder. Then she enlisted the help of placement agencies. Programs like Dornblaser’s have been around for years, but they still struggle for recognition.
Most people, when they’re suddenly thrust into the caregiver role for a loved one with Alzheimer’s, don’t know how to connect with programs or facilities that can help them. Through word of mouth or online research, the lucky ones find placement agencies or geriatric care managers.
“If you don’t know something exists, how can you ask for it?” said Elaine Gunter, a geriatric care manager in the Athens area. For two decades, Gunter has used her knowledge of the health care system to help families understand their options. Yet few people are aware they can hire someone to explain their options, so they don’t go looking for that advice.
Networking pays off
For Dornblaser, the problem is twofold: People don’t know social day care programs exist, and they don’t know about the experts who can find these programs.
In 1985, geriatric care managers formed a national organization in an attempt to brand themselves and gain more attention. Since then, their popularity has grown in urban areas in East Coast states. But they remain largely unheard of in rural areas, where people badly need them.
Atlanta has the most geriatric care managers in the state, but there aren’t enough to serve even its affluent suburbs. Dornblaser has yet to have one visit her in Lawrenceville.
As 2014 ended, Dornblaser’s networking produced results, and she now has two steady clients. One is 79-year-old Helen Louise Carter, who grew up on a farm in south-central Illinois. Carter loves chocolate, plush toy dogs and the classic crooning of Bing Crosby.
At the end of Carter’s first day at Priscilla’s Cottage, she gave Dornblaser a hug and promised to tell everyone how much fun she’d had. Carter’s daughter, who came to pick her up, was the first to hear the story.
Carter’s ability to tell everyone is limited. She doesn’t write about her experience on Facebook or Twitter, for example. But perhaps her daughter’s generation can spread the word on day care programs through social media.
After all, it’s only a matter time before Alzheimer’s disease forces many of us to begin that difficult conversation. And the sooner, the better.
Andrew Lowndes is a graduate student pursuing an M.A. in health and medical journalism at Grady College at the University of Georgia. He studied neurobiology as an undergraduate at the University of Wisconsin – Madison.