Hopkins doctor offers tips to Alzheimer's caregivers at seminar

NEIGHBORS

June 26, 2000|By William Lowe | William Lowe,SPECIAL TO THE SUN

ON THURSDAY evening, the room at Turf Valley Conference Center in Ellicott City was filled with more than 100 area residents concerned about Alzheimer's disease. Nearly all those who attended have family members or friends afflicted with the illness. Many of them serve as primary caregivers for those with Alzheimer's.

Not surprisingly, the questions asked at the Brighton Gardens-sponsored seminar tended toward the practical.

"What should you do if you are caring for someone with Alzheimer's who smokes?" an audience member asked.

"Obviously, smoking is dangerous for someone with Alzheimer," Dr. Peter Rabins of the Johns Hopkins University replied. "You have to control access to potentially harmful things. In some cases, like smoking, I think it's ethical to lie if that's the best way to keep a person from harming herself."

In his responses, Rabins drew from his substantial experience treating people with Alzheimer's disease and assisting families in making care decisions. Along with Nancy Mace, Rabins is the author of "The 36-Hour Day," the highly regarded guide for providing care for people with Alzheimer's.

Rabins answered questions from the audience for more than an hour, offering responses that combined insight, compassion and wit. In addition to practical care concerns, the issues addressed during the seminar included the development of new treatment options, the genetic risk factors associated with Alzheimer's disease, and responding to the treatable symptoms of Alzheimer's.

While no general treatment exists, many of the illness' symptoms, such as depression, can be alleviated. Successful symptom management can slow disease progression and greatly enhance the quality of life for patient and caregiver.

"We have to treat what is treatable," Rabins said.

As the high turnout for the seminar suggests, Alzheimer's is affecting more American families. More than 4 million Americans have been diagnosed with Alzheimer's. The disease is the nation's fourth-costliest illness, with annual direct health expenses in excess of $100 billion.

More than 400,000 new cases of Alzheimer's are diagnosed each year, and this figure will rise in the coming years as the elderly population in the United States increases. The number of individuals afflicted with Alzheimer's is projected to increase to 14 million in the next 50 years, with the annual direct cost of illness rising to $165 billion by 2010.

Alzheimer's results in the gradual decline of cognitive and physical abilities and culminates in complete incapacity and death. The disease also has profound implications for families, especially for those who provide care for relatives.

Seventy percent of Alzheimer's patients receive home care, with caregivers in place from 70 to 100 hours per week. Families providing home care incur an average of $12,500 in annual out-of-pocket expenses, and those expenses increase to an average of $45,000 during the late and end stages of the illness.

Choosing to provide home care typically requires a long-term commitment. After diagnosis, the average course of illness is between five and eight years; however, individuals may live up to 20 years after diagnosis. Beyond the strains on time and resources entailed in providing home care, caregivers often experience depression, exhaustion and feelings of grief and guilt as they witness the gradual decline of their loved one.

Events such as the Turf Valley seminar help provide practical advice and a sense of community for caregivers of Alzheimer's patients. On a more regular basis, Alzheimer's Association support groups serve a similar function.

"People don't realize just how important support groups are," Ed Cabic said. "We share a lot of good ideas."

Cabic, whose mother has Alzheimer's, is active in a support group that meets the second Thursday of each month at the Florence Bain Senior Center in Columbia.

Other audience members, such as Darlene Grund and Georgia DiLella, have remained active in support groups after the Alzheimer-related deaths of their loved ones. Their experience of witnessing the entire course of illness is invaluable to caregivers.

While support groups fill an essential role, Grund noted that there is still much room for improvement in providing care, particularly in the late stages of the illness when placement in a care facility usually occurs.

"We need nursing homes to have much better recreation therapy, and social workers need to become more involved," Grund said.

As the conference hall emptied, DiLella summed up her experience as an Alzheimer's caregiver.

"It drains you at every level - emotionally, physically and financially," said DiLella, whose mother died of Alzheimer's three years ago. "And when death comes, you've already been grieving for years. Alzheimer's is the longest goodbye."

Youth delegate

Dan Schointuch of Ellicott City has been selected as a youth delegate to the Mothers Against Drunk Driving (MADD) National Youth Summit to Prevent Underage Drinking 2000. Schointuch, a student at River Hill High School, will be among 435 youth delegates at the summit, with each delegate representing a U.S. congressional district or territory.

The summit will be held in Washington from Sept. 29 through Oct. 4. At the summit, the youths will discuss alcohol-related social problems and develop proposals for responding to underage drinking and youth access to alcohol.

Schointuch and the other delegates were selected to participate in the summit based on their outstanding contributions to local MADD chapters.

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