When Kathleen Negri’s previously energetic mother stopped cooking and cleaning and began sitting and staring out the window, Negri knew something was terribly wrong. But it took another five years of fear and denial before she and her family got a diagnosis and a word to explain her mother’s increasingly strange behavior: Alzheimer’s disease.
Those were five wasted years, says the 45-year-old
The experience affected Negri so dramatically that today she is embarking on a new career as a motivational speaker about Alzheimer’s disease, hoping to prevent other adult children from experiencing a similar situation.
If you or a loved one are diagnosed with Alzheimer’s disease, chances are you’ve heard the word “dementia” a lot. Don’t get the two confused, warns Alzheimer’s specialist William Pendlebury, M.D. “Dementia is a symptom, like a runny nose is a symptom of a cold,” Dr. Pendlebury says. But having dementia doesn’t mean you have Alzheimer’s. “More than 150 medical conditions – some temporary – can cause dementia,” he says, “including drug intoxication, thyroid disease, brain tumors and stroke.”
She has her work cut out for her. A national survey conducted by the Alzheimer’s Association earlier this year found that most Americans aren’t aware of the progress being made against Alzheimer’s disease. Fewer than half know that treatments are available that can ease the symptoms of the disease and improve the quality of life for those who have it. And only 19 percent felt well prepared to handle a diagnosis of Alzheimer’s in a member of their family.
Dementia vs. Alzheimer’s
If you or a loved one are diagnosed with Alzheimer’s disease, chances are you’ve heard the word “dementia” a lot. Don’t get the two confused, warns Alzheimer’s specialist William Pendlebury, M.D.
“Dementia is a symptom, like a runny nose is a symptom of a cold,” Dr. Pendlebury says. But having dementia doesn’t mean you have Alzheimer’s. “More than 150 medical conditions – some temporary – can cause dementia,” he says, “including drug intoxication, thyroid disease, brain tumors and stroke.”Your doctor should use several other criteria before arriving at a diagnosis of Alzheimer’s disease.
Even Negri, who is an elder-law attorney and has worked with the families of Alzheimer’s patients to help them prepare living wills and other legal documents, was blindsided by the diagnosis. That doesn’t surprise Alzheimer’s experts.
“I think it’s partly related to the way the medical profession approaches Alzheimer’s, particularly primary-care doctors,” says William Pendlebury, M.D., an Alzheimer’s specialist and medical director of the
Indeed, a study published in 1997 found that just 40 percent of general health professionals – primary-care physicians, psychologists, social workers and nurses – knew that Alzheimer’s was the most common cause of severe memory loss in people over 65.
That is changing, however. Former president Ronald Reagan’s diagnosis of and recent death from Alzheimer’s, new medications, and exciting new understandings of the brain – coupled with the fact that the first baby boomers turn 65 in 2011 – means that the disease is beginning to take center stage in the medical arena.
Understanding the Basics
Alzheimer’s disease affects an estimated 4.5 million Americans today, twice as many as had the disease in 1980. Some of that is due to improved diagnosing, but much is due to a graying
The greatest risk factor for the disease is increasing age, with one in 10 of those over 65 affected and nearly half of those over 85. Although there is a genetic form of the disease that affects those in middle age, it’s quite rare.
Researchers still don’t know what causes the disease, but most believe it’s related to the abnormal processing of normal brain proteins. “For some reason, later in life these proteins, which serve a normal function, begin to be processed or self-assembled into pathologic lesions,” says Dr. Pendlebury. These lesions, called neurofibrillary tangles and senile plaques, destroy parts of the brain.
Diagnosing the disease can be tricky. In fact, the only way to get a definitive diagnosis is through a brain autopsy after death. But doctors, particularly geriatricians and neurologists, are getting pretty good these days at diagnosing the disease with cognitive memory tests and, if necessary, brain scans like MRIs or PET scans to evaluate changes in the brain.
In September, Medicare, the government health insurance program for the elderly, approved coverage of PET scans for diagnosing Alzheimer’s.
“This is important because it’s the most sensitive diagnostic method we have for picking up on people at risk for the disease,” says George Grossberg, M.D., director of geriatric psychiatry at St. Louis University School of Medicine in
The more researchers learn about Alzheimer’s, Dr. Grossberg says, the more they’re learning about ways – both lifestyle and with medication – to slow its progress or prevent it in the first place.
Don’t expect your parent to offer to go for testing, however, says Pendlebury, no matter how bad the symptoms get.
“The average patient with Alzheimer’s will deny that he or she has a problem,” he says, “so it’s really up to the family to step up to the plate and be proactive in demanding that the primary-care physician do a complete work-up for Alzheimer’s.”
That’s what happened in Negri’s family. Her parents hated going to doctors. So her mother denied any problem and refused to see a doctor for years after her symptoms began. Even Negri’s father refused to take his wife for an evaluation. Negri finally had to threaten her mother with legal action before she would agree to see a doctor. The diagnosis, Negri says, “changed everything.”
“Once we had a word for it, it opened people up to what was going on,” she recalls. Before, her father yelled at her and her siblings for trying to help their mother; but after the diagnosis, he accepted the help, allowing his daughter to wash her mother’s hair, and hiring a home-health aide.
Just as important, Negri says, was the impetus it gave the family to begin planning for the rest of her mother’s life, including arranging for asset transfers and durable power of attorney.
“I cannot overestimate the need for early diagnosis, both emotionally and cognitively,” she says. “Having a word, not just your imagination, makes it real. Then you can begin treatment.”
Treating Alzheimer’s: Slowing the Decline
Until fairly recently, caring for Alzheimer’s patients was an exercise in despair. With no treatments available, health professionals could do little more than provide support to family members and watch their patients decline. But these days, doctors say, there’s a breath of hope at medical meetings on the disease.
“The mood is optimistic,” Pendlebury says. “That stems from those of us who have been treating patients long enough to be around before there were any drugs now realizing that drugs on the market are effective to some extent.”
Additionally, the federal government is pouring money into Alzheimer’s research, enhancing the chance that new and better treatments will be discovered.
Currently, five medications are approved for treating Alzheimer’s. They don’t cure the disease, but they slow its progression, buying more time for its victims and their families.
Four of the drugs – Cognex (tacrine), Aricept (donepezil), Exelon (rivastigmine), and Reminyl (galantamine) are known as cholinesterase inhibitors. They work by increasing the amount of the neurotransmitter acetylcholine in the brain and are prescribed early in the disease. Acetylcholine helps neurons, or cells, in the brain communicate.
The newest drug, Namenda (memantine), is the first available for those with moderate to severe Alzheimer’s. It works on a different neurotransmitter called glutamate.
“For reasons we don’t fully understand, in certain brain disorders like Alzheimer’s and others, glutamate becomes toxic and starts killing off brain cells,” Grossberg explains. Memantine blocks those toxic effects without affecting the beneficial effects of glutamine.
Some studies suggest that patients on the drug may actually improve in some areas, he says, a first for any Alzheimer’s medication. Namenda is now being tested in people with earlier stages of the disease.
In addition to these medications, people with Alzheimer’s may also be prescribed anti-anxiety medications, anti-depressants, and sleeping aids to help them and their caregivers better cope with the disease.
Unfortunately, by the time Negri’s mother was diagnosed, the older woman was too far into the illness for the drugs to be of any use. “We all have some guilt about that,” Negri says.
As excited as Grossberg is about new treatments for Alzheimer’s, he’s even more excited about the possibility of preventing or delaying the disease in the first place. Of course, you can’t do anything about the major risk factor – advancing age – but recent studies have unearthed other risk factors you could change.
Interestingly, many of these risk factors are identical to those that increase a person’s risk for heart disease and stroke. “High blood pressure and high cholesterol, being overweight and sedentary, and smoking may all contribute to the build up or development of the plaque that is the major hallmark of Alzheimer’s,” Grossberg says. Doctors aren’t quite sure how, but they suspect such risk factors lead to the buildup of plaque in the tiny blood vessels in the brain.
Recent studies have also found that high blood levels of homocysteine are linked to an increased risk of Alzheimer’s. Homocysteine is an amino acid that forms when the body breaks down animal protein, and is linked to an increased risk of heart disease. The antidote? B vitamins, particularly folate.
Grossberg also recommends the anti-oxidant vitamins C and E, which helps prevent free radical damage that can kill brain cells. In fact, the evidence on C and E vitamins is strong enough that Grossberg prescribes them even for patients who already have Alzheimer’s.
Additionally, omega-3 fatty acids, found primarily in fatty fish like mackerel, tuna and salmon, also seem to reduce a person’s risk of Alzheimer’s. If you’re not into fish, try taking a couple of fish oil supplements every day.
Then there’s the growing evidence that mental activity is also critical to maintaining a healthy brain. “That doesn’t mean you have to do the Sunday crossword puzzle,” Pendlebury says, “but that you read, remain socially engaged, have intelligent conversations, just remain intellectually active.” Doing that, he says, seems to decrease your lifetime risk of getting the disease.
Even just delaying the onset of the disease could make a big difference, he adds. Right now, the median age of onset (meaning half the people get it when they’re older, and half when they’re younger) is 73. “If you pushed that number back by five years, you’d reduce the prevalence of Alzheimer’s by 50 percent,” he says.
Coping with a Diagnosis
Alzheimer’s disease is often called “the long goodbye,” because its victims can live for a decade or more with the disease, losing more and more of themselves with each year. Negri compares it to a journey and says that after her mother’s diagnosis she had to learn how to take that journey and what her role would be as an adult child.
Although her father was the primary caregiver, Negri committed to spending every Tuesday morning with her mother. At first, she tried to clean the house, but that enraged her mother, who viewed the action as usurping her own role in the household.
“So I figured out I just needed to be with her,” Negri says. “To read books, look at old pictures, walk around the neighborhood.”
That’s important, Pendlebury says. “A caregiver has to take a nonconfrontational approach and accept the fact that the person has a short-term memory loss due to a disease process and not to the patient trying to be difficult.”
He also advises family members to become educated about the disease through organizations like the Alzheimer’s Association (see Resources) and to be willing to accept the support available in most communities through respite care and support groups, so they don’t develop caregiver burnout.
Negri did all those things, and is thankful she did. Before her mother died in July, the two had grown closer. “She became an open, loving person with Alzheimer’s. She was never like that before,” Negri says. Instead of being devastated by her death, she says, “I’m joyful for her to be gone and for what she gave me.”
• The Alzheimer’s Disease Education and Referral (ADEAR) Center Information Specialist – 800-438-4380, www.alzheimers.org – This service of the National Institute on Aging, provides up-to-date information about Alzheimer’s and related disorders to patients and their families, caregivers, health-care providers and the public. The center operates a toll-free information and referral line, 1-800-438-4380, Eastern time, Monday through Friday. Callers can get answers to basic questions about Alzheimer’s, caregiving, research and treatment studies, as well as free publications and referrals to other organizations for additional information and services.