Number of support groups for sufferers of disease growing
By KENDALL ANDERSON / The Dallas Morning News
Ben Stevens was puzzled when he could not remember his computer passwords one day at work. He grew frustrated when the names of his cats slipped his mind.
But nothing compared to the day last year when a doctor told the Irving resident he had Alzheimer's disease.
"I cried; I banged my head against the wall; I was suicidal," said Mr. Stevens, 63. "And guess what? None of that changed my situation."
Knowledge, strength and medication have improved Mr. Stevens' outlook and mental performance. So has help from Alzheimer's support groups, which are growing in popularity among the 35,000 people in the Dallas-Fort Worth area who have the memory-sapping disease.
Such groups have increased from two to 15 since 2000 at the Center for Brain Health at the University of Texas Southwestern Medical Center. Twice as many people have sought support groups at the Alzheimer's Association of Greater Dallas this year compared with last, and chapters nationwide have begun offering more services for those who have the disease. Historically, the association targeted caregivers.
AT A GLANCE
Alzheimer's disease is one of several disorders that cause the gradual loss of brain cells. The disease was first described in 1906 by German physician Alois Alzheimer. Although the disease was once considered rare, research has shown that it is the leading cause of dementia.
Cause and cure: Unknown. Recent studies have found that performing mentally challenging tasks and taking new medications and certain vitamins, such as folic acid and Vitamin E, can lower the risk of Alzheimer's.
Disease progression: The areas of the brain that control memory and thinking skills are affected first, but cells ultimately die in other regions of the brain. Eventually, a person with Alzheimer's will need complete care. If the individual has no other serious illness, the loss of brain function itself will cause death. Some research shows that brain-stimulating activities may be able to slow the inevitable mental erosion that comes with old age.
Disease duration: Varies, from three to 20 years.
Number of people with it in the United States: More than 4 million.
Number of people with it in Dallas-Fort Worth: 35,000.
Projected increase in cases in Dallas-Fort Worth by 2025: 97 percent, to 68,950.
Financial cost: $100 billion a year in the United States in long-term health care and lost productivity. Neither Medicare nor most private health insurance covers the long-term care most patients need.
Contacts: Greater Dallas Chapter Alzheimer's Association 1-800-515-8201 (toll free); Ft. Worth 1-800-471-4422 (toll free).
Memory loss: While it's normal to sometimes forget appointments, names or telephone numbers, those with dementia will forget such things more often and not remember them later.
Difficulty with familiar tasks: People with dementia often find it hard to complete everyday tasks. A person with Alzheimer's may not know the steps for preparing a meal, using a household appliance or participating in a lifelong hobby.
Problems with language: A person with Alzheimer's disease often forgets simple words or substitutes unusual words, making his or her speech or writing hard to understand. If a person with Alzheimer's is unable to find his or her toothbrush, for example, the individual may ask for "that thing for my mouth."
Disorientation to time and place: People with Alzheimer's disease can become lost on their own street, forget where they are and how they got there and not know how to get back home.
Poor or decreased judgment: Those with Alzheimer's may dress without regard to the weather, wearing several shirts or blouses on a warm day or little clothing in cold weather. Individuals with dementia often show poor judgment about money.
Problems with abstract thinking: Balancing a checkbook may be hard when the task is more complicated than usual. Someone with Alzheimer's disease could forget completely what the numbers are and what needs to be done with them.
Misplacing things: A person with Alzheimer's disease may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl.
Changes in mood or behavior: Someone with Alzheimer's disease can show rapid mood swings from calm to tears to anger for no apparent reason.
Changes in personality: People's personalities ordinarily change somewhat with age. But a person with Alzheimer's disease can change a lot, becoming extremely confused, suspicious, fearful or dependent on a family member.
Loss of initiative: It's normal to tire of housework, business activities or social obligations at times. A person with Alzheimer's disease may become passive, sitting in front of the television for hours, sleeping more than usual or not wanting to do usual activities.
"We expect that trend to continue because baby boomers are more likely to be self-seekers for information and help," said Kathleen O'Brien, vice president of program services for the Alzheimer's Association.
More people younger than 65 are learning they have the disease because of medical technology and awareness. Early onset Alzheimer's occurs when the disease strikes before age 65. It accounts for about 15 percent of all cases and is expected to grow as baby boomers begin turning 65 in 2011.
Advocates say people in their 50s and 60s who have the disease don't fit the common stereotypes that Alzheimer's strikes only the very old and leads to instant mental dysfunction.
Mr. Stevens was a longtime Xerox employee who solved tough computer problems. He now volunteers, advocating for policy and financing changes for Alzheimer's disease. One member of a local support group for men in their 50s was a Navy admiral. Another was the vice president of an insurance company who now regularly reads to schoolchildren.
Mr. Stevens' co-workers were speechless when he told them he had Alzheimer's. The avoidance no one dared utter the "A" word, he said was hurtful, but he said he understood.
Baby boomer Janice Collins lost two jobs before she learned she wasn't dumb she had Alzheimer's disease.
"It was taking me longer than anyone else to do the new computer system at the bank," she said. "I thought I was stupid."
Ms. Collins never thought that at 56 she would have to rely on her sister to dole out money. While she still can manage her finances, the government won't directly send her disability payments.
"It's not exactly building your self-esteem," Mr. Stevens said.
The friendships formed at the support groups help with those challenges, he said.
Ms. Collins agrees. She does not have a significant other nor does she have many close friends. Having a sense of community and family, among other factors, can help prevent depression and the onset of the Alzheimer's in those who have a family history of it, research shows.
She welcomes the regular calls from Mr. Stevens, reminding her of the next day's meeting. Or when his wife, Bethel, invites her to their usual breakfast outing.
To get his brain going, Mr. Stevens said he heads to Mama's Daughter's Diner nearly every morning instead of lounging around the house.
He also checks his e-mail, participates in an online support group and started a new group called Brain Health Cafe, which includes those with Alzheimer's and their care partners.
But throughout his serious regimen, he doesn't forget his self-deprecating wit. It is as central to his battle as his medication, he said.
"I stay busy," he said. "But that and accomplishing something are two very different things."
One recent day, he wanted to cut open a bag of candy to eat but instead caught himself cutting open toilet wipes.
"I said to him, 'Well, those ought to taste real good,' " Mrs. Stevens recalled, laughing.
Mrs. Stevens has her own support group, for caregivers.
"You wonder how soon is he going to be in diapers, how soon am I going to have to feed him," she said. "The group has helped me not be so afraid."
People in church stare at Mr. Stevens, his wife says, even though he insists that's not the case.
Friends who once came around have disappeared.
Even at home, where family photos and sentimental trinkets hang, discomfort is common. Mrs. Stevens' patience grows thin.
Mr. Stevens feels normal behaviors are being wrongly categorized as Alzheimer's-related.
When support groups aren't available, Mr. Stevens relies on other things. He often will reach for his favorite photo his 1-year-old grandson Blaine, laughing wildly in his grandparents' hallway.
"There is a great medicine there," Mr. Stevens said. "At some point, I am not going to know which direction the bathroom is. But it may happen tomorrow, or it may happen 10 years from now. Why ruin today thinking about tomorrow?"