From public disclosures by the late President Ronald Reagan to a new facility at St. Ann’s Home in Rochester, Dr. Alois Alzheimer would have been pleased by increased attention on the disease bearing his name.
Such attention comes none too soon, based on projections for a dramatic increase in cases of Alzheimer’s — a progressive disease that erodes the brain’s memory cells, causing gradual memory loss, personality changes, and diminished ability to comprehend and speak.
According to the Alzheimer’s Association, an estimated 4.5 million Americans are afflicted with the disease. That figure stands at least to triple in the next 40 years, due to the aging of baby boomers, coupled with increases in life expectancy. The Alzheimer’s Association warns that the disease could severely impact health-care funding if a cure is not found.
However, positive steps are being taken in both research and care of Alzheimer’s patients. One example is a Special Care Unit that opened in 2001 on the first floor of Rochester’s St. Ann’s Home. The 36-bed unit is tailored to people with mid- and late-stage dementia — mostly Alzheimer’s patients.
Among the floor’s features are a small waterfall; plants; laundry and kitchen areas; small office; “baby room” with stuffed animals and bassinet; group meals; specialized staff; and soft music playing throughout the floor with no intercom and limited television usage.
Dean Anne Brown, the unit’s nurse manager, said the open-spaced facility suits the wandering tendencies, confusion and need for familiar objects, routines and socialization typical of Alzheimer’s patients.
“They’re having enough trouble hanging on to what they do; they can’t be distracted by anything else,” Brown said.
Kenny Prince, 81, a jovial man with Alzheimer’s, has resided at the Special Care Unit since January. Prince said he likes to watch sports and old movies on TV — often accompanied by the unit’s resident cat, Charlie — and go for walks. Baseball is his favorite sport next to hockey and basketball, a point he made several times during a 10-minute visit. He told detailed stories about his Army days, but haltingly recited his four children’s names and estimated that he has “four to six” grandchildren (he has five).
“They’re very nice here,” he said of the St. Ann’s staff, quipping, “I told them ‘You’d better treat me nice, because I’m a Prince.'”
In the public eye
The St. Ann’s unit reflects heightened awareness that is relatively recent, considering that Dr. Alzheimer, who died in 1915, made his breakthrough discoveries in the early 20th century. The disease was once deemed rare, but is now regarded as the most common form of dementia among senior citizens.
Alzheimer, a German physician, based his conclusions on a 1906 examination of brain tissue from a woman who had died of mental illness. Chief in his discovery were clumps (now known as amyloid plaques) and bundles of fibers (now known as neurofibrillary tangles). Since then, scientists have found that these buildups force the loss of nerve cells and the blocking of messages between them.
Progression of Alzheimer’s can take place over a period of three of 20 years. Its earliest stage is marked by mild confusion, memory loss and irritability. In the next stage these traits intensify, and the patient may also become apathetic and get lost in familiar places. Patients in late stages may lose their voices, not recognize family or close friends, and become bedridden.
According to the Alzheimer’s Association, 10 percent of the population will develop Alzheimer’s by age 65; that number rises to nearly 50 percent by age 85. Approximately 100,000 deaths per year are linked directly to Alzheimer’s. Although a patient can live with Alzheimer’s for several years, the loss of brain function “will take your life eventually if you don’t die from something else first,” said Teresa Stewart, executive director of the Alzheimer’s Association’s Rochester chapter.
Both Stewart and Brown give major credit to President Reagan, who died June 5, for his efforts at awareness-raising. In 1983, while still in office, he designated November as National Alzheimer’s Disease Month. In November 1994, President Reagan announced in an open letter to the public that he had recently been diagnosed with the disease, stating that he and his wife, Nancy, “hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.”
“When someone that revered makes a public statement — that boosted awareness tremendously,” Stewart said, adding that the Reagans “have done a world of good for our cause.”
“Being such a communicator, he did a lot to advance the cause,” Brown agreed. Before that, she said, “People were ashamed. And it’s nothing to be ashamed of.”
Yet Stewart observed that full acceptance and understanding of Alzheimer’s has not yet occurred. “It is absolutely not a normal part of aging; it is a disease of the brain,” she said. “(But) we want to just brush it off as senility, hardening of the arteries.”
“We’ve always kind of discriminated against people with mental disabilities,” Brown added, noting that Alzheimer’s patients don’t fit the American ideal “that you pull yourself up by the bootstraps, that you can achieve anything.” She said people’s aversion to addressing the disease might also be because “I don’t think we want to face death. We don’t even want to entertain the possibility that we might get Alzheimer’s or get dementia.”
According to Stewart, doctors can now make diagnoses “with about 90-95 percent accuracy” that somebody is living with Alzheimer’s through accessing medical histories; mental examinations; interviews with family members; magnetic resonance imaging (MRIs); and blood work. In addition, 95 percent of knowledge about the disease has been acquired in the past 15 years, leading to the development of medications by which “we can slow the disease down and improve our quality of life,” Stewart said.
To slow progress of Alzheimer’s — and possibly even prevent it — the Alzheimer’s Association suggests monitoring one’s cholesterol, blood pressure and sugar, and body weight. Other keys to slowing or preventing Alzheimer’s are exercise, along with performing such mental activities as crossword puzzles, playing cards, reading and conversing with others.
Brown noted that these tips are important because — unlike residents of the floor she supervises — most Alzheimer’s patients live at home and do not have the resources available on her Special Care Unit.
Progress is also reflected in the Alzheimer’s Association’s growth nationwide. Begun in 1980, the organization (which can be accessed on the Web at www.alz.org) now has 81 chapters. The Rochester chapter covers nine counties in the Rochester Diocese — Monroe, Livingston, Steuben, Yates, Ontario, Wayne, Seneca, Chemung and Schuyler. The diocese’s other three counties — Tompkins, Tioga and Cayuga — are in the Syracuse chapter.
The Alzheimer’s Association regularly runs awareness meetings as well as support groups for caregivers of Alzheimer’s patients. Brown noted that St. Ann’s Community recently began a monthly Alzheimer’s support group as well. Also on the local level, Nazareth College hosted a June 3 Alzheimer’s symposium, during which experts addressed memory functions and the benefits of physical activity, socialization, music and dance for Alzheimer’s patients.
Stewart said support groups reflect increased attention to the struggles faced by loved ones of Alzheimer’s patients. An April 28
teleconference “Living With Grief: Alzheimer’s Disease,” sponsored by the Hospice Foundation of America, explored the grief experienced by patients and family members through the disease’s progression. The conference was viewed by more than 2,000 organizations nationwide.
Another important step is The Nun Study, begun in 1986 by Dr. David Snowdon. The project involved several hundred School Sisters of Notre Dame who donated their brains for Alzheimer’s research after they died. The nuns also allowed their personal medical histories to be accessed and took part in several mental and physical tests while alive.
Despite all these developments, Stewart noted that only four or five drugs currently are on the market for Alzheimer’s patients whereas “there are hundreds for cancer.” She said that the Alzheimer’s Association is asking Congress to increase federal funding from $700 million to $1 billion annually in hopes of quicker progress toward a cure for Alzheimer’s.
This is vital based on statistics provided by the Alzheimer’s Association: Medicare costs for beneficiaries with Alzheimer’s are expected to rise from $31.9 billion in 2000 to $49.3 billion in 2010 — an increase of 54.5 percent over a 10-year period. Medicaid expenditures on nursing facilities for Alzheimer’s patients will increase to from $18.2 billion to $33 billion over that time frame — an 80 percent jump. These trends would continue to accelerate in subsequent decades, Stewart said.
Without a cure, she remarked, “Alzheimer’s will cripple our Medicaid and Medicare systems. There’s no doubt about it.”