Increased information helps, but caregivers still see death arrive in small increments

By Nick Casey, Special to the Town Crier

As the loved ones, doctors and caregivers of patients with Alzheimer’s disease have learned, the burden of chronic memory loss is not just with the patient. More than 4.5 million cases of Alzheimer’s have been diagnosed in the United States alone, leaving countless families to face the physical, emotional and financial challenges of a disease that has a long duration - an average of 6.8 years - and currently no cure.

One of the first obstacles was getting the disease recognized by the medical community.

“For years it was passed off as ’senility,’” said Dr. Elizabeth Edgerly of the Alzheimer’s Association of Northern California, headquartered in Mountain View. “People considered it to be normal.” Edgerly said that although the condition was named in 1906, diagnoses were rare until the 1980s.

“Alzheimer’s didn’t ‘appear’ in the last 25 years,” she said referring to the skyrocketing number of cases in recent decades. “The difference is today’s awareness.”

With this awareness has come research. Doctors now understand that the degenerative neurological disorder is the consequence of plaques and tangles in the brain. The plaques form as certain enzymes cut neural proteins, leaving a waste product that leads to the death of healthy brain cells. Tangles form when other proteins that give structure to neurons begin to break down.

The first part of the brain affected by Alzheimer’s is the hippocampus - the part of the brain in charge of coding recent experiences into memory - and hence the most common early symptom is the inability to recall recent experiences. Edgerly also said problems with judgment, disorientation and language were among the top warning signs for Alzheimer’s.

However, since Alzheimer’s progresses in small increments, its patients often have difficulty getting a proper diagnosis.

“The doctors originally told us it was anxiety and depression,” said Ann Davidson whose husband, Julian, was a professor at Stanford.

“The trouble was, Julian was a typical absentminded professor - always late and double-scheduling appointments,” said his wife. “So when these things began happening, we didn’t notice it.”

Julian was eventually diagnosed with a case of early onset Alzheimer’s at age 59.

His wife recalled the illness as a harrowing time for both. “He lost everything you think is important to a human being,” she said. “Meanwhile, you have to experience loss after loss in slow motion. It’s like a death that goes on for 12 years, only in tiny little increments. You are coping with loss and acceptance, over and over.”

After the diagnosis, their lives began a radical transformation. Julian and Ann fought to cover up the symptoms during the first years to allow Julian to retain his post as professor of molecular and cellular physiology at Stanford.

Eventually the disease worsened and he was forced to retire. As Julian became unable to walk the neighborhood without becoming disoriented, Ann was faced with the challenging dilemma of how to occupy an active, middle-aged husband unable to direct himself.

“All of us had to become ingenious about how to invent a life for him,” she said.

As the disease progressed, Ann eventually had to find adult day care in Menlo Park, then full-time residential care. Though Julian became increasingly impaired during these years, Ann remembers certain times she calls “joyful,” many centering around rare moments of lucidity when her husband was able to speak to her.

“He would say to me: ‘I’m not intelligent anymore, but please let’s enjoy our lives while we can,’” she said.

Publishers Daniel & Daniel will release Ann’s new memoir, “A Curious Kind of Widow: Loving a Man with Advanced Alzheimer’s,” this week. Her previous book, “Alzheimer’s, a Love Story: One Year in My Husband’s Journey” (Carol Publishing Corp.) was pubished in 1997, before her husband’s death in 2001 at age 70. The new book focuses on the last stages of the couple’s 12-year struggle.

Not all cases of Alzheimer’s however extend that long. Marlene Minasian learned of her father, Johnny’s, illness only four years before his death.

Like the Davidsons, Marlene found that getting a doctor’s diagnosis was difficult. “I had to really convince his doctors that there was anything wrong with him,” she said. “They said, ‘Oh it’s natural at his age’ - he was about 74 at the time.”

As her mother stepped into the role of primary caregiver, Marlene conducted online research, contacted doctors and found new medications to help her father.

Oddly, she said, physicians were sometimes an obstacle to her father’s well-being. “We wanted to start my father on memantine, but the neurologist said there were side effects and wouldn’t prescribe it,” she said. “(My father) needed the medicine, so we had to find him someone else.”

“It’s tough to find doctors who have full expertise on Alzheimer’s,” she said. “There are so few geriatricians in the area. A lot of them have closed practices, so you can’t get in.”

Despite the emotional and financial strain - including out-of-pocket costs for medication - Marlene was able to find some comfort in a support group in Mountain View.

“We got to talk about what was going on that month - everyone’s loved ones were at different stages of the illness,” she said. “We’d share and give advice.”

Jill Center, communications director of the Alzheimer’s Association Northern California & Northern Nevada, knows the importance of having support networks. She, like many of the center’s employees and volunteers, has experienced the disease, having lost a father and mother-in-law to Alzheimer’s.

“Our mission is two-fold,” she said. “Creating a world without Alzheimer’s and enhancing the quality of life for those who live with it.”

The Alzheimer’s Association of Northern California & Northern Nevada is located at 2065 West El Camino Real, Mountain View. For more information visit www.alznorcal.org, www.alzheimers.org, or call 962-8111.