It was Thanksgiving evening, a couple of years ago, that Barbara Jean Hocter faced the toughest of moments in caring for a loved one with Alzheimer’s disease. The other members of the family had just departed from the Hocters’ home in Cos Cob, and now Donald, her husband of forty years, had on his coat and hat and was ready to head out as well. “I asked him where he was going,” says Barbara Jean, “and he said, ‘I’m going to find my wife.’ I said, I am your wife.’ He became very angry with me. He said I wasn’t his wife. I was just sobbing, trying to convince him.”
Don, who has since died, had been a warm, social, engaging individual, an entrepreneur and salesman for his various inventions. But as he descended into the vortex of Alzheimer’s, it seemed like he had become another person, an increasingly frail, ailing person, who spent hours staring vacantly out a window. “It was a very complicated grieving process,” says Barbara Jean, who is known as B.J. “I grieved for the man that I knew, and I grieved for the person I took care of. It was like a double grieving.”
Alzheimer’s disease, which has no cure, is perhaps the cruelest of afflictions. In targeting the brain in its slow but inexorable march to shutting down the body, it steals from its victims the very essence of their being. Memory loss, confusion and inability to perform basic functions all contribute to the dismantling of once vital people. Loved ones, meanwhile, are left with the paradox of mourning the living, as they watch spouses and parents, among other relations, drift away before their eyes. And though Alzheimer’s often strikes the aged, one would be wrong to dismiss it as part and parcel of growing old. Nor does it bypass younger people. Though less common, early-onset Alzheimer’s strikes people in their thirties, forties, and fifties.
What’s behind this disease that shuts down neural connections and kills brain cells is largely a mystery. For those over sixty, aging is the most obvious risk factor, with the odds of developing Alzheimer’s doubling nearly every five years between sixty-five and eighty-five years of age. Genetics can also play a part, especially in the early-onset variety. And though diet, hypertension, limited education and a sedentary lifestyle have all been cited as having a hand in the disease, most studies into causes and prevention fall short, some considerably short, of definitive, as the New York Times reported last year.
In the past, when the average life span was shorter, people tended to succumb to other maladies before Alzheimer’s caught up with them. Today, it is the sixth leading cause of death in the United States, recently overtaking diabetes for that dubious distinction. Some 5.3 million Americans, including as many as 70,000 in Connecticut, suffer from Alzheimer’s. And as waves of baby boomers enter their winter years, those numbers are going to burgeon. By 2050 some 13.5 million Americans over age sixty-five are expected to have the disease, according to the Alzheimer’s Association.
If such projections come to pass, if better treatment remains elusive, the impact on society and the healthcare system would be daunting, even overwhelming. “Where do we put these people? How do we care for them? How are family members going to be able to care for them?” asks Dr. Stephen Jones, director of the Center for Healthy Aging at Greenwich Hospital. “We’re on the brink of a real problem here if we don’t get our hands around this.”
SCIENCE & RESEARCH
Scientists have heard the call to arms. Though answers have come slower than many would prefer, progress is being made. “Overall, there’s a better understanding of the disease right now,” says Dr. Danilo de la Pena, executive director of the Research Center for Clinical Studies in Norwalk. “There’s a lot of mechanisms that are explained better than before. And they’re testing disease-modifying agents [drugs] now, which they never did before.”
Scientists are taking a particularly hard look at the accumulation of beta amyloid plaques and neurofibrillary tangles that litter the brains of the disease’s victims. The plaques, produced by the enzyme gamma secretase, are fragments of a larger protein and are clumped on the outside of neurons, or brain cells. The tangles, which are found inside the cells, occur when a key protein, tau, is damaged, most likely by the amyloid plaques.
It remains unclear whether plaques and tangles, though they are the prime suspects, actually cause Alzheimer’s—by killing neurons and short-circuiting the functioning of the brain—or if they are just a by-product of the disease.
What is certain is that their presence is a telltale sign of Alzheimer’s. For many years, in fact, the only way to get a definitive diagnosis of Alzheimer’s was to wait until after the patient died and then examine the brain. That’s beginning to change. Researchers are using brain imaging to reveal plaques before symptoms even occur. At Yale, for example, investigators are taking PET (positron emission tomography) scans of the brains of people who had a parent with Alzheimer’s, with an eye toward preventive measures down the road. Spinal taps, too, have proven successful in detecting beta amyloid and tau, though some have questioned whether the test is worth the potential pain and anxiety. (Be aware, too, that for now such methods are mainly restricted to research.)
Pharmaceutical companies, meanwhile, are trying to develop drugs that reduce brain plaques in hopes of curbing, if not outright reversing, the disease. While some notable failures in clinical trials have raised doubts about whether the plaques are the cause or the result of Alzheimer’s, more studies are underway.
“This is not unusual in terms of these drug trials,” says Dr. Jones. “This is kind of the way it goes. More than the majority of them don’t really succeed. There are so many drug trials going on right now, looking at this problem from so many different angles. More likely than not, it’s not going to be just one solution. It will probably be a combination of different approaches.
“In terms of the plaques, this is the chicken and the egg. We don’t know which comes first. Are the plaques a byproduct of the disease or are they a cause of the disease? That’s debatable. But I think most people feel that certainly the plaques do produce problems in terms of the brain communicating with different neurons and brain cells. So it’s almost irrelevant one way or the other because they’re there and whether they’re a byproduct of the disease or the cause of the disease, they are a manifestation of the disease, and that goes hand in hand with a remedy.”
A wide range of remedies are also being pursued. Stem cells, for example, might be a way to stave off plaques and tangles and restore the brain’s circuitry. Although human applications are still down the road, studies are underway that involve introducing healthy stem cells, from blood and bone marrow, for instance, into the brain to differentiate from neural cells and replace those that have been damaged. Other studies look to stimulate stem cells already in the brain, to repair the damage Alzheimer’s has wreaked.
Geneticists, too, are ramping up their efforts, seeking to better understand the role of heredity in those who develop Alzheimer’s. Although an inherited gene variation called apolipoprotein E (APOE) can influence the development of late-onset Alzheimer’s, family history plays a bigger part in the early-onset variety of the disease.
Meanwhile, researchers are encouraged by studies with hypertension medications; insulin nasal spray; and drugs that activate production of the protein sirtuin, said to protect the body from disease and which may contribute to longevity, to name just a few new approaches. All this signals a growing awareness about Alzheimer’s, not only in scientific circles but with the general public as well. Everyone, it seems, knows somebody touched by the disease. More information, services, and clinical trials are available now than ever before.
“I’m finding that people are more educated [about Alzheimer’s] than they were five to ten years ago,” says Carole A. Edelman, director of geriatric care management for the Waveny Care Network in New Canaan. “More people are beginning to sit down earlier and talk with their parents, even maybe before some cognitive problem exhibits itself, to try to be more prepared for the time when there may be some change, whatever that might be.”
What’s more, people are getting earlier diagnoses. As they age, some seniors begin to dwell on lapses in memory, dreading that they have Alzheimer’s. They might also be feeling disoriented or struggling with once-simple activities like balancing their checkbook. Rather than be consumed with worry, healthcare providers say, it is a good idea to look into a comprehensive assessment.
Since doctors can’t probe the brain of a living person, they diagnose Alzheimer’s through a combination of excluding other possible causes of dementia (depression, thyroid problems, tumors, medications, among other problems), physical and cognitive tests, and brain scans to detect atrophy or other changes in the brain.
“This is a disease right now that is so widespread and has such a unique kind of characteristic to it that we can be fairly certain that people are suffering from the disease without having to wait for them to die and do a brain biopsy,” says Dr. Jones.
One of the key factors that doctors take into consideration when making a diagnosis is short-term memory impairment. “People can’t remember the most recent events,” says Dr. Jones, of those who have Alzheimer’s. “Long-term memory, reaching back to when they were children or younger adults, is relatively intact throughout most of the disease and really only starts to go toward the end.”
Simply put, recent happenings fail to get stored in the Alzheimer’s victim’s memory banks. By way of explanation, Dr. Jones compares the brain with a filing cabinet. “It puts things away in a file, and when you retrieve the memory, you open up the file and pull it out,” he says. “Well, with Alzheimer’s patients, it never gets put into the file. The information doesn’t get processed properly.”
Another indicator of Alzheimer’s is that individuals have difficulty with visual-spatial relationships. When asked to draw a clock and make it at a specific time, for example, Alzheimer’s patients falter. “They draw all sorts of strange things and put the time in the wrong place and put the numbers in the wrong place,” Dr. Jones says. “The brain is seeing the spaces in the environment in a corrupted way.”
Dementia is not a diagnosis in itself. It is a broad term for a range of conditions that involve memory loss or other cognitive impairment. Alzheimer’s, though the major cause of dementia, is but one possibility. Vascular dementia, related to stroke or narrowing of the blood flow to the brain, is the next biggest form. Although it can coexist with Alzheimer’s, vascular dementia stands out because of the sharp drop-offs that its victims suffer. While Alzheimer’s is more of a continuous decline, vascular dementia is marked by a sudden and noticeable drop in cognition, a plateau period, then another sharp decline.
“It’s a terrifying thing to hear that you have Alzheimer’s, both for the patient and the people that love them,” says Dr. Jones. “It is a difficult conversation to have, but it’s an important conversation to have because we want those people to get the support they need and to prepare them for what’s coming down the pike.”
Alzheimer’s is a progressive illness that can take from five to twenty years after diagnosis to run its course. In its early stages, individuals suffer frustrating but not debilitating memory impairment, particularly involving new information. Some will become confused or lost when they venture out or have difficulty with common tasks.
Change in personality often comes into play. Alzheimer’s victims tend to be easily agitated or angry, a result of frustration as well as underlying physiological changes in the brain.” Some of the first signs we see,” says Dr. Jones, “even before memory loss, people become more apathetic and withdraw, and as the disease progresses the people become more confused, and they can have even psychiatric disorders as well: agitation, delusions, hallucinations.”
Over time, memory further deteriorates. Verbal expression becomes a challenge, as does identifying people who were once familiar. Because of the changes in their brain, people’s bodies no longer respond as they once did. Often, victims are unable to dress themselves; basic coordination skills begin to deteriorate. As the disease progresses, they become noncommunicative, unable to do anything for themselves and bedridden.
“There are many things happening but, generally, what’s happening is that the connections between the brain cells are getting clogged and as that happens those brain cells start to die off,” says Dr. Jones. “So the brain cells don’t communicate with each other and eventually they start to die and the brain shrinks. That happens in an advancing type of cycle. It affects the short-term memory first, then it affects the deeper parts of the brain as the disease progresses. It’s not so much that neurons are dying off. The disease is really about them not being able to communicate with each other effectively and, as a result, as a secondary consequence, they generally die off.”
Alzheimer’s patients tend to die of pneumonia, infections and/or complications from other illnesses that go undetected because of their deteriorating mental state and inability to communicate. “As people develop more problems feeding themselves, they tend to have problems like aspirating their food,” explains Dr. Jones. “Nutrition goes down. Hydration goes down. It’s multifactoral, but a common reason people die of this is pneumonia.”
Some people argue that since Alzheimer’s is currently incurable, early diagnosis serves no purpose other than to upset people, undermine their self-esteem, and needlessly label them. Doctors and others who work with Alzheimer’s patients counter that early diagnosis allows individuals and their families to take advantage of certain medications that can delay symptoms; deal with legal, financial and other matters; find resources they’ll need down the line; and partake in clinical trials.
FINDING THE RIGHT CARE AND GUIDANCE
It’s a tough road. The physical and emotional toll that the disease exacts is burden enough for anybody. But Alzheimer’s sufferers, and more often their loved ones, must also slash through the thickets of finding the best care and make some of the toughest decisions of their lives. On any given day, they could be faced with deciding to place a parent in a nursing home, or deciphering Medicare requirements, or drawing up a living will. It all demands a lot of time, research and legwork, and the average person can start to feel under siege.
That’s why it’s important for families to reach out soon after diagnosis to an individual or organization that can provide guidance. Some people hire professional case managers to tackle the many details and chart the course of care. For others, advice is available from community social-services departments, or adult daycare or comprehensive assessment facilities such as Greenwich Hospital’s Center for Healthy Aging. The Alzheimer’s Association, a national advocacy group, which has an office in Norwalk, is probably the best one-stop shop for educational resources and finding help.
No treatment currently available will reverse or halt the progression of Alzheimer’s, but doctors can recommend drugs that, especially in the early stages, have the potential to diminish or stave off symptoms for as long as several years, depending on the individual. Donepezil (Aricept), rivatigmine (Exelon), galantamine (Razadyne), and memantine (Namenda) can help maintain memory, speech and other functions.
B.J. Hocter’s husband, for example, was prescribed donepezil and memantine during the course of his disease, with good, though brief, results. Donald’s speech had started to become garbled, B.J. remembers, which upset her because he had always been a gifted conversationalist. Soon after his doctor started him on donepezil, he was speaking like normal again. “He said his first sentence to me and I went running into the kitchen and said, ‘What did you just say?’” she recalls. “His speech was so clear, it was like a miracle.”
Clinical studies, for their part, also offer advantages. Certainly everyone hopes that experimental treatments will improve an individual’s condition. Even if they don’t, many people participate as a way to contribute to the bigger fight, a gift to their children, grandchildren and others who may face the disease one day.
Patients in clinical trials, which can be run on an outpatient or live-in basis depending on the trial, receive frequent, thorough evaluations and monitoring of their dementia and other conditions, which they wouldn’t get with their regular doctor. “Plus they’re in an environment where people really know and understand their condition and are comfortable with it,” says Christopher H. van Dyck, director of the Yale Alzheimer’s Disease Research Unit. “Many times they get kind of ancillary care, if you will, as part of their participation.”
Less tangible, but no less important, early diagnosis provides an opportunity for Alzheimer’s patients to take advantage of supportive services and to try to come to terms with their illness, and their fate. Counselors and support groups go a long way toward finding peace of mind.
“Talk about identity crisis,” says Maureen Matthews, a clinical nurse specialist at the Stamford Counseling Center. “You’ve thought of yourself as one way and your place in the family, your place in the community, your place in society, your ability to be depended on, to be a provider. So in the moment of diagnosis, there is a real crumbling of all that. It is a real crisis.
“Depending on their personality, some people move into denial. Others on the opposite extreme retreat and become afraid to venture out and lose their confidence. In between, there are people trying to find a way to still have meaning within their family and their relationships.”
Channe Fodeman, a licensed clinical social worker in Westport, provides psychological counseling for elderly clients all around Fairfield County, including many with Alzheimer’s. Working with them early, when their memory is still good, Fodeman can tap into people’s strengths and how they dealt with past difficulties. She emphasizes living in the present, enjoying the good in each day, indeed in each moment.
For many with Alzheimer’s, she says, one of the biggest hurdles is allowing oneself to be cared for by others. “We all see ourselves as doers,” Fodeman says. But at some point, people have to “accept that you can’t do what you used to do, that doesn’t make you a failure. There are other parts of ourselves; we can accept being as well as doing. We need to say: ‘At this stage of my life I’m going to look at how I can just be this human being, and that I don’t have to be a doing human being.’”
Healthcare professionals speak with admiration of the innovative ways that so many people affected by Alzheimer’s and their loved ones find to embrace life. Some individuals in the early stages of the disease even become advocates for finding a cure and increasing funding for research.
Others fight smaller but no less moving battles. Matthews tells of a woman whose motor-functioning was affected early on, who had trouble feeding herself and was hesitant to dine out because people stared when her husband helped her eat. So her husband turned to her and said, “Why don’t you just put your arm in a sling, and then when we go out to a restaurant everyone will accept the fact that I have to help you with your food?” That kind of relationship gets you through a lot of the difficulty and stresses of this illness.
Some take it a step further. For them, Alzheimer’s becomes a metaphor for our boundless capacity to love. “I am a changed person,” says B.J. Hocter, five months after her husband’s death. “So much wisdom came from it. I believe for the first time in my life I really knew what love was. I just see the world differently.
“My husband had become like a baby. When he would frustrate me or I would be frustrated with the illness, I would always think about his mother and how she would want me to treat him. This illness, even though at times it brought out the worst in me, I would say on the whole it brought out the best in me, because I would always put myself in my husband’s place and how I would want to be treated.”
First Steps Where To Turn
312-335-8700 (national office)
800-272-3900 (help line)
Centers for Disease Control and Prevention
Family Caregiver Alliance
Greenwich Adult Daycare
Greenwich Hospital Center for Healthy Aging
National Institute on Aging
Alzheimer’s Association TrialMatch
U.S. National Institutes of Health
Research Center for Clinical Studies
Yale Alzheimer’s Disease Research Unit