As the director of the Jewish Community Center’s Adult Day Center Program, Deborah Ellis is acquainted professionally with Alzheimer’s disease. As the daughter of a woman who suffers from Alzheimer’s, Ellis is acquainted personally with the disease. Now, Ellis brings her professional skills and her personal experience to the Missouri Alzheimer’s State Plan Task Force.

Late last year, Governor Jay Nixon appointed Ellis to the 17-member task force. “I feel very honored,” says Ellis, 55. “When I met Gov. Nixon in November at a reception, he said to me, ‘Just go out there and be a leader.’ “

In a statement from Samuel Murphey, Nixon’s executive deputy press secretary, Nixon expressed his confidence in Ellis, saying, “Because of her background in social work, adult care and hospice services, Deborah Ellis will offer important insights as the task force moves forward with its important work.”

Alzheimer’s disease is an incurable brain disorder named for German physician Alois Alzheimer, who first described it in 1906. According to the Alzheimer’s Association, 5.3 million Americans are living with the progressive brain disease, which is the seventh-leading cause of death in the United States.

The new task force is charged with:

* Assessing the current and future impact of Alzheimer’s and related dementias on residents of Missouri;

* Examining existing services and resources addressing the needs of persons with dementia, their families and caregivers;

* Developing recommendations to respond to the escalating public health situation regarding Alzheimer’s.

A similar task force was formed in Missouri in 1986. “The first task force defined the disease and provided funding for basic services such as respite care,” says Carroll Rodriguez, another task force member and director of public policy and communications for the Alzheimer’s Association of St. Louis. “Now we’re taking another look at the disease, at what is going on now, so we can prepare for what’s going to happen in the future.”

Going into the community

By the end of January, the task force will begin traveling to five different cities – St. Louis, Kansas City, Springfield, Cape Girardeau and Columbia – to meet with the public to find out what issues concern people the most. “Over time, we will come up with recommendations for a state plan,” says Ellis. “Then we will work to implement some of those recommendations over the next two years.” Members of the task force receive no compensation.

Ellis, who lives in Wildwood, has directed the JCC’s Adult Day Center Program for the past two and one-half years. The program currently serves 50 individuals. Lynn Wittels, president and CEO of the JCC, has high praise for Ellis. “Deb has been a terrific addition to our staff and to the community of Adult Day Centers for the entire St. Louis region,” says Wittels. “She has a true commitment to serving the broad needs of our clients in a very professional and sensitive way and she has brought innovation to the program at the JCC.”

A licensed clinical social worker who has worked in health care for her entire career, Ellis projects a confident air and much personal warmth. Previously, she worked for Barnes-Jewish Hospital, for the St. Louis Health Department, for a dialysis company and as the support services manager for the former Unity Health Hospice, now St. John’s Mercy Hospice.

“Throughout my career, I’ve been working with adults and senior citizens with Alzheimer’s, and of course my personal experience with my mother got me very interested in the disease process,” Ellis says. “Seeing what she has gone through in the last six or seven years, I’ve become more acquainted with the limits of care and the difficulties for families.” Ellis’ mother is Virginia Ellis, 85, of Ellisville.

A coalmining engineer’s daughter

Ellis was born in West Virginia. “My dad was a mining engineer, and he opened up coal mines, so we lived in different states, primarily Ohio,” she says. She moved here 30-plus years ago when she married. Three years ago, Ellis’s marriage ended. On New Year’s Eve, she became engaged to Bud Hartman, 57, an agent with American Family Insurance. Ellis has two grown daughters and Hartman has two grown sons. They are planning an October wedding.

“We both love fall,” says Ellis, beaming. She also enjoys gardening, being outdoors and shopping. Mentioning that last interest, she laughs. “I also like decorating my home. I’m pretty much a homebody, though I also like to travel. Bud and I recently took a trip down the Rhine River.”

Ellis notes that when it came time to choose a major at the University of Louisville, she struggled. Eventually she chose social work. “I believe I was called to be social worker by God,” she says. “I also believe that my whole career has been getting me ready to do this job. Working here fills a need that I have in myself. The J has a mission of taking care of the elderly in the community at large, and we want to have the best program here that we possibly can.”

Learning to accept Alzheimer’s

Often the hardest part of struggling to cope with a family member diagnosed with Alzheimer’s is acceptance, Ellis says. “People are in different stages of acceptance when a family member is diagnosed. Sometimes, the tendency is to pretend the disease is not there, that the family member is just suffering from memory loss. And in some communities, there is a real sense of shame about the diagnosis.”

Ellis adds that some physicians are reluctant to give a firm diagnosis of Alzheimer’s, preferring to speak of memory loss instead. “Sometimes it’s difficult for people in the medical community to use the ‘A’ word. This will be a growing problem, as the population continues to age.”

Ellis brightens and says, “I have read that if you make it to 96 and you don’t have Alzheimer’s, you won’t get it.”

Newly diagnosed individuals often do experience grief and a sense of loss, says Ellis, and the time of diagnosis is exactly the right time for individuals and their families to begin working with the Alzheimer’s Association. “We have shown in my program and statistically that you can delay the progression of the disease by keeping physically fit, keeping up social contacts and doing cognitive exercises.”

Some people think that individuals with Alzheimer’s are bitter and unhappy much of the time, but Ellis says that is not so. “When I see the smiles and hear the laughter, I know the people with Alzheimer’s that we care for are happy, and it’s really neat to see people happy. It’s also neat to hear families thanking us for what we do.”`