"Alzheimer's is a terrible disease," Dr. Nancy Bologna tells an audience of more than 50 people, most of whom are caring for relatives with the disease. "But life with Alzheimer's does not have to be terrible."
Bologna, director of psychiatric services at Touro Infirmary, is giving a lecture titled "Living With Alzheimer's." The seminar is at Woldenberg Village, a seniors' community in Algiers whose residents reside in independent- or assisted-living condos or an on-site nursing home. Nearly everyone in this audience has firsthand knowledge of Alzheimer's, which causes progressive and irreversible brain damage, dementia and eventually death.
Many are surprised to hear that there's a genetic component to the disease and that Alzheimer's actually starts in the young adult years. "The neurological degeneration is very gradual, at least in the early stages," Bologna says. "So if you are going to be diagnosed with Alzheimer's, you already have it."
Symptoms usually emerge after age 65, and Bologna says that more than 50 percent of people older than 85 show signs of the disease. The reason so many more people seem to have Alzheimer's today, as compared to a generation or two ago, is simple: our lifespans are longer these days.
Though research and treatment for Alzheimer's have made major strides in recent years, "it's important to remember there is no cure," says Jimmy Fahrenholtz, interim executive director of the Alzheimer's Association of Louisiana. "We have medications that can slow down the progress of the disease, but they don't stop anything -- and not all people respond to them."
However, the Alzheimer's Association of America lists six major areas of research that have shown promise for better medications and a possible cure. Until recently, Alzheimer's drugs available in the United States were most effective when begun in the disease's early stages. Three weeks ago, the federal Food and Drug Administration approved a German drug, memantine, which has been effective in patients suffering moderate to advanced Alzheimer's. Researchers say it has the potential to help a large portion of the 4 million Americans with the disease.
Medications are just one part of treating Alzheimer's. When a patient is diagnosed, experts recommend support groups, physical and mental activity, and continuing education on the disease -- not just for the patient, but for his or her primary caregiver as well.
Fahrenholtz calls caregivers "the secondary victims of Alzheimer's." Usually spouses or children of the patient, caregivers suffer emotional, physical and financial stress that often leads to depression and illness. Not surprisingly, patients decline more rapidly when their caregivers are burned out. In recent years, support networks for caregivers have blossomed, and health care experts are putting more emphasis on the importance of caregivers.
"For the caregivers, it can be even more devastating than for the patients," says Fahrenholtz, also a New Orleans School Board member and attorney. "Once people move into the latter stages of Alzheimer's, they are no longer cognizant of what's going on. But the caregivers are devastated over the gradual loss of this person. And they have no time for themselves.
"Alzheimer's patients, when their memory deserts them, are not responsible for themselves at all," he says. "They will put you in the worst situations. They can become combative; they will fight you. It's a 24-hour-a-day, seven-day-a-week job, and what we tell caregivers is that you've got to take care of yourself first. You can't take care of anyone else if you're impaired."
The first sign of Alzheimer's is a combination of behaviors that are persistent and uncharacteristic to the person. These include chronic memory lapses, language problems, disorientation to time or place, uncharacteristically bad judgment, mood swings, difficulty performing familiar tasks, or a lack of initiative.
Anyone who shows more than one of those symptoms should visit a neurologist, psychiatrist or gerontologist for a full Alzheimer's screening. That's the recommendation of experts who say the earlier and more thorough the diagnosis, the better the quality of life can be for both patients and caregivers. Patients can immediately go on medications to slow, stabilize or even improve symptoms of dementia, and all parties have more time to plan for the future.
Medications are just one part of treatment. Patients and caregivers are urged to contact the local chapter of the Alzheimer's Association, which can "plug them right in" to resources and support, Fahrenholtz says. "We recommend that people stay as active as possible," he says. "There are simple things that can be done, ways to exercise your mind. A diagnosis of Alzheimer's is in no way a death sentence. Some people stay in the early stages of the disease and never progress. So the sooner the diagnosis, the better."
Among the biggest concerns about Alzheimer's patients are the behavioral and mental lapses that can create safety hazards to themselves and others. Bologna stresses that patients' homes must be modified early on, to make it easier for them to perform routine tasks and avoid dangerous household situations. "They really do need protection," she says.
Such challenges are often overwhelming for caregivers, who think they can never leave the patient alone. "They feel like they're joined at the hip with someone," Bologna says. "It's an enormous burden, but there are resources available to help."
That includes assisted-living facilities and other types of housing that allow for independence even as the disease progresses. "There are excellent Alzheimer's residential programs that are not nursing homes," Bologna says. "And there are Alzheimer's wards in nursing homes where people are out of bed, interacting with each other in social groups."
Another resource is day care for Alzheimer's patients. Born of the evidence that activity and a change of scenery dramatically improve the quality of life for patients -- and for caregivers who need a break -- adult day-care centers have sprouted up around the country. Bologna herself launched one in 1997 at Touro.
The problem with adult day care, though, is that it's usually an out-of-pocket expense; the Touro Adult Day Center, for example, charges from $25-$50 per day. Alzheimer's advocates are pushing for more government and insurance funding to cover such services, saying the number of Alzheimer's patients across the country have skyrocketed and will continue to escalate as baby boomers age. "There are 70,000 people in Louisiana with Alzheimer's, and that's a conservative estimate," Fahrenholtz says. "The cost for their care is going to be quite staggering, but it's something we need."
About 15 to 20 people regularly attend the Touro Adult Day Center, a little less than its maximum capacity. "It lessens the guilt for caregivers," Bologna says, "to bring them someplace where they'll not only enjoy themselves, but actually thrive."
Bologna is giving a tour of the center, the first of its kind in New Orleans. Today, there are several adult day-care centers in the metro area. She points to the patients' art projects on display, including needlework pictures hanging on the walls.
The patients here are part of Touro's volunteer corps and make greeting cards to include on hospital patients' meal trays. "It drives me crazy when people give them coloring books," Bologna says. "We want them to do something meaningful. This makes them feel productive, which they are. It makes them feel useful, which they are."
Today, patients are cooing over an employee's baby daughter, who is visiting for the day. The overwhelming mood here is one of optimism. "The staff are here to make people happy," Bologna says. "Their job is to make sure that everyone has a good day."
The center gives a much-needed respite to caregivers, many of whom are working through their own grief. "They have to build a new relationship with that person, because the old relationship is gone," Bologna says.
"We tell them they need to learn to appreciate what that person has left. Which may be easy for me to say -- it's probably a lot easier for us to be cheerful and happy around the patients, because we never knew them when they were doctors or lawyers," Bologna says. "That's a hard thing to tell family members: to stop grieving over what they have lost and look at what they have left."
Family members often urge patients to maintain their longtime interests and responsibilities -- which is frustrating for everyone, Bologna says. "Families spend inordinate amounts of time reminding them of things they used to do, with the misguided hope that if they keep reminding them, they'll remember." She shakes her head. "It doesn't work that way. We tell them they have to stop challenging the patient. They don't need to be pushed. What they need is security, reassurance and acceptance."
Bologna maintains a relationship with many caregivers, offering practical advice and insight. "We've gotten pretty good at giving people really clear recommendations," she says. "Everything from new ways to communicate with the patient, to how to set up the living environment so it's a failure-free place for them. It's about getting people to accept the situation and move forward in a constructive way."
A patient drops into the activity room to greet Bologna. Diagnosed with early-onset Alzheimer's at age 63, Frank Friedler Jr. is now a regular face at the Touro center. "I had lunch with Pam today," Bologna tells him, referring to Friedler's wife. She hugs Friedler and dances with him a little bit, boasting about his extensive autograph collection and his former role as a New Orleans city councilman, businessman and civic leader.
It's late afternoon, and caregivers -- some with children in tow -- are arriving to pick up their charges. "When we first opened up," Bologna says, "people used to ask, 'How are you going to get people to stay there all day?' But we never have had anybody who stands at the door and wants to go home. More often, we have people who don't want to leave."
- Donn Young
- Dr. Nancy Bologna works with Frank Friedler Jr., the former city councilman who was diagnosed with early-onset Alzheimer's at age 63. "What [patients] need is security, reassurance and acceptance," says Bologna.