Yet, says Harbin Clinic neurologist Jeffery Glass, this depressing disease is ignored by the general population while AIDS awareness campaigns are all around.
Approximately 4.5 million Americans suffer from the disease today. As the population ages, Glass said, that number will only increase. The Alzheimer’s Association estimates that by 2050, prevalence of the disease will range between 11.3 million and 16 million if no cure or prevention is found.
Alzheimer’s — which cannot be definitively diagnosed until after death — is characterized by a gradual loss of brain cells that control thinking skills.
It usually occurs in people 65 and older, although Dr. Smita Varshney, a geriatric psychiatrist at the Harbin Clinic, has had a patient with full-blown Alzheimer’s in her 40s. Cases have even been documented in Down Syndrome patients in their 20s and 30s.
Alzheimer’s is classified in three stages: mild, which can last from three to five years; moderate, two or three years; and severe (profound dementia), one or two years.
This means the disease usually runs its course over an average of eight years without medication, Varshney said.
But patients can linger in the mild stage an additional five years, she said, if the proper medication is administered early.
Medications called cholinesterase inhibitors, which increase the memory chemical acetylcholine in the brain, have been available to slow the effects of Alzheimer’s since the early 1990s.
Cognex, the first to emerge, is no longer prescribed because of its many side effects, Varshney said. But Aricept, Exelon and Reminyl have come out since and are more tolerable for most patients.
Cholinesterase inhibitors help increase short-term memory capacity so Alzheimer’s patients can function better on a day-to-day basis, but these drugs do not reverse progress of the disease. “Whatever’s lost will not come back,” Varshney cautioned. “But what’s there will be maintained at that level.”
A new drug called Memantine is on the horizon for Alzheimer’s patients in the moderate or severe stages. It is being prescribed in Europe but has not been approved by the Federal Drug Administration for use in the United States. Varshney said she expects to be able to prescribe it by early 2004.
Medications in the past had not been shown to help severe patients. But Glass said he tends to err on the side of caution, prescribing medications for those farther along in hopes it might help. “The treatment available right now is benign (in terms of side effects). I’d rather make the mistake and put them on the meds. You can always stop them later.”
Most Alzheimer’s research has been fruitless in recent years, despite significant spending by the federal government on Alzheimer’s research — $598.9 million in the past year alone.
The goal is nerve regeneration — what Glass calls the “Holy Grail” of neurology. “But we aren’t anywhere near that,” he said.
Some studies, Varshney said, have yielded results suggesting various preventative measures can combat the onset of Alzheimer’s.
While Varshney cautioned the results of these studies are not standard recommendations yet, some evidence suggests that taking vitamin E supplements or ibuprofen to reduce the inflammation of brain cells might help.
There are other studies surrounding the use of estrogen to help cognition and delay the onset of Alzheimer’s. “But the results are not definitive,” Varshney said. “I wouldn’t specifically recommend it (estrogen therapy).”
Some people believe the herbal supplement ginkgo balboa can help memory, although evidentiary support is lacking for this treatment, she added.
Genetic disposition has been linked to early-onset Alzheimer’s — the five percent of all cases diagnosed before the age of 65. But the genetic testing available to screen for the disease is “not consistent” and not approved by most insurance companies, Varshney said.
Glass also doesn’t see much of a purpose in this kind of testing. “What are you going to do with the information? It’s not going to help treat the disease,” he said, adding health care dollars would be better spent seeking a cure.
Money might be spent looking for a definitive test for the disease as well, because “for Alzheimer’s, diagnosis is by exclusion,” Varshney said.
The Alzheimer’s Association reports researchers are trying to delineate “markers” like protein levels in blood and structural or functional changes that appear in brain imaging for easier diagnosis. But for now, a final diagnosis cannot be made until the patient’s brain tissue is examined during autopsy.
The results of blood tests and psychiatric screenings can indicate an 80% chance that a patient’s forgetfulness is the first stage of Alzheimer’s.
People who are forgetful to the point their level of functioning in day-to-day life has been impacted need to approach their physician for screening as soon as possible, Varshney said. Sometimes forgetfulness is caused by a reversible condition such as a vitamin B-12 or folic acid deficiency or a thyroid problem.
Early diagnosis is crucial, and family members play an important role in noticing the warning signs: trouble learning new things, short-term memory problems, difficulty with language — such as finding the right word or completing sentences — and difficulty organizing things.
Ordinary daily tasks such as driving, shopping, cooking and balancing a checkbook become impossible, Varshney said.
Observing the performance of tasks like these is the best way for family members to recognize cognitive decline, Glass said. Most people have a tendency to misplace things or forget names now and then — it’s concrete evidence such as arithmetic mistakes that provide solid proof of decline.
“The best sign I have that someone doesn’t have Alzheimer’s is they come in worried about it,” Glass said. Most patients, he continued, don’t realize it or refuse to admit having a problem.
Some Alzheimer’s patients do notice deficiencies. In this case, they can become very depressed, anxious and irritable, and personality changes can occur. Often, Varshney said, her patients need antidepressants along with their Alzheimer’s medication.
Sometimes when a family member is diagnosed with Alzheimer’s, Varshney said, others in the family experience intense anxiety not only for the family member diagnosed but also for themselves — out of fear they’ll be next. “It’s devastating,” she said.
While families usually can cope during initial stages, when they must place their loved one in a nursing home they begin to feel guilty and depressed.
If patients are medicated in early stages, however, nursing home placement could be delayed by five years. This would relieve family members of intense financial and emotional strains as well as allow patients to enjoy independent living that much longer.
It’s hard to determine how many have Alzheimer’s in Rome, Glass said, because primary care physicians are becoming more and more comfortable with treating the disease themselves rather than sending patients to neurologists.
While there doesn’t seem to be a cure in sight, Glass encourages people to remain cognitively active as they age by doing crossword puzzles and picture puzzles and playing card games.
Borrowing an old adage to make his point: “If you don’t use it, you lose it,” he advised