Sheryl Ludeke-Smith

At the Lantern Alzheimer’s Center, a specialized assisted living facility in Collegedale, an activity room full of small pumpkins ready for carving almost could be mistaken for an old-time schoolhouse from the early 20th century.

Complete with a dusty chalkboard, a wooden school desk and a poster of Abraham Lincoln, the room’s decor is meant to evoke a setting that might seem familiar and reassuring to the Alzheimer’s patients who live there.

Kelli Harless, executive director of the Lantern, a program of Morning Pointe Assisted Living, said the aim is to calm confused patients who often can remember the era of their childhood, but not the name of their long-time spouse.

But like other assisted-living facilities, this one tuned to the special needs of people with dementia is financially out of reach to many families. Assisted living facilities average $3,500 a month locally, and they are not covered by Medicare.

“Some of these people, the only resource they have is their Social Security, and that’s not going to cover these costs,” Ms. Harless said.

With the first of the baby boomers edging into their 60s, medical statisticians expect the number of Alzheimer’s cases could double from 5.2 million to 11 million — or triple to 16 million — by midcentury.

With a tidal wave of memory-deficient and reasoning-impaired patients on the horizon, many elderly advocates are calling for help to get the nation prepared.

“This is urgent,” said Sally Brewer, area program director for the Alzheimer’s Association’s regional office in Chattanooga.

“This is gonna be the health epidemic of the next century, and people still want to walk away from it because they think Alzheimer’s is an elderly disease,” she said.

Despite some high-profile Alzheimer’s cases such as the late Ronald Reagan’s, Ms. Brewer said the nation’s understanding of dementia remains distressingly shallow.

“It is a profound lack of education with doctors, lawyers, bankers, the community at large,” Ms. Brewer said.

Sheryl Ludeke-Smith, director of the Alzheimer’s Association in Memphis, said the lack of awareness fuels the funding pinch for a problem that clearly will be costly. But she said she fears it will cost even more if the nation doesn’t prepare.

“It could totally break our whole economy,” she said.

FUNDING MEDICAL SOLUTIONS

Researchers are getting tantalizingly close to breakthroughs in understanding Alzheimer’s and identifying treatments or even preventive measures for the disease, but stagnant funding is hindering progress.

“The money to support specific cognitive research is actually going backward,” Ms. Ludeke-Smith said. “Many of our young researchers are pulling out of doing research because there’s just no money there to support it. It’s like we get to the door but we never get through the door.”

Funding allocated by Congress for Alzheimer’s research peaked in fiscal year 2003 at $658 million. It has remained at about $644 million for fiscal year 2008 and 2009.

Comparatively, $703 million was allocated for breast cancer research for fiscal year 2009, and $2.9 billion was allocated for HIV/AIDS research, which afflicts more than 1.1 million Americans, according to the most recent estimates from the U.S. Centers for Disease Control and Prevention.

“In real terms our buying power has been reduced by 10 to 13 percent. There’s a lot of research that’s very good that isn’t able to be funded these days,” said Marcelle Morrison-Bogorad, Ph.D., director of National Institute on Aging’s Division of Neuroscience. She heads the country’s Alzheimer’s research program.

The Alzheimer’s Association is asking for an additional $125 million for Alzheimer’s research in fiscal year 2009, Ms. Ludeke-Smith said.

HELP FOR CAREGIVERS

Without the help of family caregivers, who devote an estimated $2 billion worth of unpaid care hours annually in Tennessee alone, the long-term care system and nursing homes would be intensely burdened by dementia patients. Yet those caregivers lack much-needed support services, advocates say.

Ms. Ludeke-Smith said 222,820 Tennessee caregivers provided 192 million hours of unpaid care in 2007 to loved ones with Alzheimer’s. Because the disease can progress slowly — typically 10 years from diagnosis to death — caregivers are under intense stress for long periods and often neglect their own health, she said.

About one-third of family caregivers have symptoms of depression, according to the Alzheimer’s Association. They also are more likely to have high levels of stress hormones, reduced immune function, slow wound healing, new hypertension and new coronary heart disease. Research shows that 60 percent of caregivers either worsen their own physical health conditions or die before the person for whom they’re caring.

Chattanoogan Renee Trent, 57, relented a few years ago and put her husband, Sam, 60, who has Alzheimer’s, in a nursing home. But she said she still takes antidepressants to cope.

“Sometimes I stay up all night,” she said. “Somedays I sleep two days straight. It takes a toll on your mind and your body.”

Andi Erwin, 57, of Collegedale, also feels the stress of caring for her 62-year-old husband, Jim, who is still at home.

“I laugh when I can. I cry when I have to. Sometimes I get into the car and go to an empty parking lot and scream,” she said.

Ms. Brewer said Alzheimer’s families also need more coverage for Alzheimer’s drugs, which are very expensive and not yet available in generic form.

“I have people considering, ‘Well, do I want to give (my spouse) his dementia medicine or do I want to eat?” Ms. Brewer said.

Retooling options

Viston Taylor, president and CEO of Alexian Brothers Community Services, said consumers need more choice in what their Medicare benefits will cover, including homemaker services and daytime sitters for Alzheimer’s patients, not just hospital visits and doctor appointments.

“It’s unfortunate, because most of the health needs of families and older people are chronic,” Mr. Taylor said. Medicare’s payment system “doesn’t really recognize the aging of the population and the prevalence of chronic disease. It’s the health insurance program for older people, so why shouldn’t it pay for their true needs?”

Ms. Harless said families need more help identifying other means of assistance that may be available through other programs such as the Veteran’s Administration.

In Tennessee, state legislators have said state funding will shift from nursing homes toward alternatives such as home and community services. For patients enrolled in Tennessee’s managed Medicaid program, TennCare, those services include help making meals and housecleaning.

Ms. Brewer said the shift is a positive one and should be accompanied by grants for respite programs and adult day-care options to give caregivers some much-needed breaks.

The Pace program at Alexian Brothers Community Services is a rare Medicare-Medicaid partnership that offers low-income Alzheimer’s patients who are residents of Hamilton County specialized day care and physician services, as an alternative to nursing home care. But the program can’t work for patients past a certain point in their disease.

The Tennessee Legislature last year mandated a statewide study of the impact of Alzheimer’s and created the Alzheimer’s Task Force.

The panel held a series of town hall meetings around the state this year that gave voice to providers, caregivers and Alzheimer’s patients about the weaknesses in the system. The task force will report to the Legislature with specific suggestions for legislation by February 2009.

Ms. Brewer said the town hall meetings’ recurrent themes were the dire need for geriatricians, more day care for patients and caregiver respite programs.

Another need identified was more awareness training, even among health care professionals, Ms. Brewer said.

Fear and confusion can prompt aggression in dementia patients, and often hospital workers don’t know how to react, she said.

“You have ERs strapping people down with dementia and that is the worst thing to do. You have emergency care people that are uneducated, unequipped to take care of these folks,” she said.

A special care

For those who can afford them, specialized Alzheimer’s care facilities such as the Lantern program at Morning Point adapt their environments to the world of the dementia patient.

Jeff Beaty, member of the state’s Alzheimer’s Task Force and chief operating officer of Serenity Healthcare, said that means making those residencies more homelike, as opposed to clinical, and adopting a “person-centered” approach to be able to communicate with the often communication-challenged patients.

“In order for you to do that, you have to enter into their world, and they give us the doors to enter,” he said. “If you just sit and listen ... there’s a little bit of lucidity in things they say. Once we are trained to focus on that and find that piece ... we can adapt our environment to them.”

At Alexian Brothers Valley Residence, an assisted living facility that specializes in Alzheimer’s patients, the buildings are laid out in a circular design so that if patients wander, they won’t get lost. In the kitchen areas, all chemicals are locked up and the oven controls are under a locked cabinet, executive director Robin Jackson said.

Ms. Harless said the Lantern Alzheimer’s Center collects patients’ detailed social history to tailor activities to improve their quality of life as their disease progresses.

One resident there who had been an avid gardener before his illness would work contentedly for hours potting and repotting plants, she said.

Another resident, who had been a singer in the church choir, is no longer verbal. Yet just last week she shocked her caregivers when she sang every word to “Amazing Grace,” Ms. Harless recounted at a recent support group meeting.

“I had cold chills all over,” Ms. Harless said.