While reversing the destructive course of AD is not yet possible, research discoveries are slowly revealing more about the disease. At the same time, high-profile sufferers, such as acclaimed author and philosopher Iris Murdoch, President Ronald Reagan and actor Charlton Heston, are making the public aware of AD’s bewildering effects. As the disease destroys brain cells, individuals with AD lose the ability to connect words with objects, names with faces and time with memory, until they become shadows of their former selves and enigmas to loved ones. "The hardest thing for the family to deal with was the loss of the mind," recalled Lourdes Prieto, assistant to the dean of Kean’s College of Natural, Applied and Health Sciences, who lost her mother-in-law, Betty Nakashima, a professor of early childhood education at the University from 1967 to 1977, to AD. "What the disease does is rob the person of his or her personality and who the person is," Prieto stated.

Nakashima was diagnosed with AD in the mid-1970s, when all the information contained in The Merck Manual of Diagnosis and Therapy was a single, concise paragraph that revealed almost nothing to help her family understand what was wrong. At that time, science had not uncovered much more about AD than the brain pathology associated with it, which was first discovered in 1906 by a German physician, Alois Alzheimer. In the book, Aging With Grace, a landmark study on AD in a population of Catholic nuns, Dr. David Snowdon provides details on the foreign doctor’s findings. Alzheimer had a female patient who exhibited peculiar behavior and an unusual kind of memory loss that declined until she was unable to communicate and had to be bedridden. Upon her death, Alzheimer autopsied the brain and discovered two abnormal structures, which are now called Amyloid plaques and Neurofibrillary tangles. The plaques are masses of protein that accumulate outside of brain cells, while the tangles are protein bundles that form inside the cells. Scientists have varying hypotheses about what causes these destructive structures, but when they emerge in great number, the result is clear: healthy brain cells are replaced with the plaques and tangles; vital nerve cells disappear; and the person with AD experiences the loss of his or her memories — and the ability to create new ones.

Initially, the destruction that AD inflicts on a person’s memories causes symptoms like confusion and disorientation. Nakashima, who spoke four languages and had enough strength of character to survive a Japanese-American internment camp in California before moving to the east coast, was suddenly overwhelmed by situations that never would have fazed her in the past. Prieto remembered, "Once my father-in-law asked me to meet Betty at a school she had to visit, because, though she had made these trips for years, she had begun getting confused about where she was and what she had to do. He wanted me to be there to help her." Prieto added, "At first, he thought it was just stress."

Families often chalk up the changes in loved ones’ conduct to stress, which can mean that AD is not properly diagnosed until it has reached its middle or late stages. Dr. Sylvio Codella, professor of biological sciences at Kean, whose father suffers from AD, recalled the early signs of the disease. "My father was a very gregarious man who, though he had only a high-school education, was extremely well-read and intelligent. We used to have these long, engaged conversations," Codella said. "But, in the early 1990s, while I was living far from home in Minnesota, I began to notice a lot of disconnects in our phone conversations. I knew something wasn’t right, but when I spoke with my mother or sister to find out what was going on, they would say, ‘Oh, he’s stressed out.’ Even the family doctor said the changes were happening just because my dad was getting older." Codella’s father wasn’t diagnosed with AD until the late 1990s, and, by that point, his personality had changed dramatically.

One of the reasons AD is difficult to diagnose is that what happens in the brain can’t necessarily be seen with the naked eye. According to an article titled "Next Frontiers" in Newsweek, the latest technological advances in equipment like Magnetic Resonance Imaging (MRI) machines and Positron-Emission Tomography (PET) scanners have made it increasingly possible to detect the shrinking of the brain and the growth of plaques and tangles that are trademarks of AD, sometimes before behavioral symptoms are manifested. However, inadequate hospital or insurance resources may limit the availability of these tools for everyone who could benefit from them. Doctors traditionally have made a diagnosis of "probable" or "possible" AD based on a number of factors, including a complete medical history; a physical examination; a psychiatric evaluation; laboratory analyses that may help determine if dementia symptoms are due to something other than AD, such as a stroke; and tests like the Mini-Mental State Exam, which assesses a patient’s ability to remember, understand and communicate. When using these customary measures, an absolute diagnosis cannot be determined until death, when a brain autopsy confirms the presence of the characteristic plaques and tangles.

After obtaining the "possible" or "probable" AD diagnosis, families may watch the decline of relatives’ ability to function for as long as 20 years, which is why the disease is often referred to as "the long goodbye." The early signs of Alzheimer’s dementia, problems with abstract thinking and memory loss, grow increasingly worse until AD sufferers even forget the names and faces of the people closest to them. Fr. Alexander Santora, Kean’s Campus Ministry Catholic chaplain, said that his father’s symptoms initially were diagnosed as depression, a common ailment of those with AD. "It was after the third visit to a mental health facility that my father was finally diagnosed with Alzheimer’s," Santora recalled. After that, the once bright, active and outgoing man who had been an East Coast Golden Gloves-champion boxer retreated to his home. "He stayed inside. It was almost as if he knew he wasn’t himself and didn’t want others to see him that way," Santora noted. AD symptoms progressed slowly until one day, his father was sitting alongside Santora in the car. He tapped his son on the thigh and whispered, "Who is that woman?," referring to his wife, who was sitting in the back seat of the car.

Lore Ullrich, former secretary and friend of Nakashima, recalled the time she realized that the gentle, intelligent woman with whom she had regularly attended the opera would never be the same again. "Betty had retired, and I hadn’t seen her in a long time, but, one day, a mutual friend had a luncheon, so we could see her," Ullrich said. "We had prepared finger food, because Betty could no longer use a knife and fork, and when she put a carrot stick in her mouth, she suddenly became so agitated that she went and hid behind the sofa." When Ullrich asked Nakashima why she was hiding, she answered, "My mother said we should never put things in our mouths that other people can hear." Ullrich noted, "It was as if she had regressed to being a child."

Many people make the analogy that caring for people with AD is like watching over a young child, because, as neurological damage progresses, the afflicted lose the memories that help them perform everyday tasks, such as eating, and getting dressed. This causes frustration and pain for the patient, and places an enormous burden on the family. An even greater worry is the fact that many AD sufferers become so disoriented that they take actions that are harmful to themselves, such as turning on household appliances and forgetting to turn them off, or venturing outside their residences to wander the streets, confused, agitated and unable to find their way home. Sometimes, AD patients can take actions that are harmful to others as well. Santora recalled a harrowing incident that occurred when his father was in the late stages of Alzheimer’s. "Before, the disease just caused him to do inappropriate things, like put on the wrong clothes, but just a few months before he died, my father threw a chair at my mother," Santora revealed. "Luckily, it didn’t hit her. But when she asked him why he threw the chair, he didn’t even know he had done it."

AD sufferers’ perplexing behavior can sadden and frustrate even the most stoic family members, but additional challenges can be devastating. First, there’s the toll of arranging — and paying for — the loved one’s care. Neither Medicare nor typical insurance plans cover long-term care, and families usually tend to those with AD at home, or they draw extensively on their financial resources to provide professional treatment. "My father wound up getting a reverse mortgage on his house to pay for care because we went through all the savings," said Mary Beth Kane, coordinator of American Humanics in the Nonprofit Leadership and Management Collateral Certificate Program at Kean, whose mother had AD.

Then there are the conflicting, confusing emotions that arise while families watch their AD-afflicted loved ones become people they barely recognize. "The real tragedy is to know that my father would have been deeply offended to see himself the way he is now," Codella said regretfully. His father is now in the late stages of Alzheimer’s and no longer communicates at all. "Visiting him in the nursing home is something I do purely for myself, because he doesn’t even know anybody else is in the room," he said.

Losing the ability to communicate is one of the most striking characteristics of the late stages of AD. Kane had a very intimate relationship with her mother before AD took hold, and she found the loss of interaction agonizing. "For the last two and a half years before she died, not only did she not know me, but she didn’t respond to stimulus at all," Kane recalled. "But I needed to believe that, on some level, she was aware, so every time I visited her, I sang to her. And I brought lotion and massaged her hands. That was crucial for me in feeling that I was still making a connection with her."

Family members often come up with unique ways to connect with those who suffer from AD, though they may not get a response. However, sometimes Alzheimer’s patients have moments of clarity that come, like blessings, to provide family members with meaningful memories. "One day, I took my father to the neurologist. Since the doctor’s office was in Montclair, N.J., where my father grew up, I had the impulse to drive by his childhood home," Codella recalled. As we passed by, he suddenly yelled and pointed at the house. I don’t remember now exactly what he said, but it was clear he knew it was his house." Prieto also cherishes a fond memory of the time she became engaged to Nakashima’s son. "We showed her my ring, and, at first, she had a confused expression on her face. But then, suddenly, she knew what it was and what it meant. We understood she was happy we were getting married."

Windows of lucidity notwithstanding, as brain cells die and connections between those cells are lost, nothing can reverse the decline of AD. But there are drugs and other treatments that can help minimize symptoms and, with luck, delay the need for institutional long-term care. Four drugs approved by the U.S. Food and Drug Administration prevent the breakdown of acetylcholine, a chemical messenger in the brain, and improve symptoms in about half the people who take them. National Institutes of Health (NIH) recently reported that stem cells show the potential to replace lost brain cells in mice. Though this research is highly controversial, some scientists hope that such replacement will occur in human subjects as well. There are also numerous non-invasive treatments used by health-care practitioners to ensure safe and comfortable environments for AD sufferers and engage them in activities that can help decrease feelings of agitation or depression and even allow them to perform self-care tasks independently for longer periods of time.

Advances in medicine and treatment options can offer hope to families who understandably feel helpless in the face of AD. Those of us who have not been touched by the disease, can also learn from information that countless research programs are discovering about possible ways to prevent AD. According to the NIH, folic acid and diets rich in foods containing vitamin E may help reduce the risk of contracting the disorder. Several studies have also revealed that people who regularly engage in mentally stimulating activities like reading, doing crossword puzzles, playing card games or going to museums may have a reduced risk of getting AD.

One of the most significant risks of developing AD is one that can’t be avoided — old age. Studies have shown that nearly 10 percent of people 65 and over suffer from it, and that number rises to as much as 50 percent for those 85 and older. But a small percentage of people, develop what is called "early onset" AD. Nakashima was diagnosed with the disease when she was merely 53 years old, and some individuals can develop AD as early as their 30s, according to a recent report on ABCNEWS.com. Several known genes have been found that are connected with early-onset AD. Though nothing can prevent those with the gene from contracting AD, an article titled "Risk Free Babies" in Newsweek, said that reproductive specialists enabled a woman with an early-onset gene to conceive a child free from the mutation by screening and testing her fertilized eggs.

The course of AD, advances in gene therapy and other kinds of research raise ethical and philosophical questions about what comprises a person’s humanity: Is it in the genes? The intellect? The memories? Families who witness their loved ones struggling with AD find themselves thrust into a mystery that makes them question the very nature of life, and many come to conclusions that change the way they think about the world. "What this has taught me is that we are so much more than flesh and bone," said Codella. "Is this man with Alzheimer’s disease my father? Yes, he’s my father, but in a very real sense my father is gone." Kane, whose mother is no longer living, says she will always feel her mother’s presence. "When she was in the early stages of AD, my mother asked me, ‘What will happen when I don’t remember?,’ and I answered, ‘It won’t matter, because we’ll be in each other’s hearts.’" In a sense, it is with friends and family that memory, that thing so elusive to individuals with AD, lives on.