Caregivers seek answers for Lewy Body Dementia
Eight years ago Norma Loeb, now 57, was regularly taking her mother, Lillian, to a geriatrician after the 80-year-old Bronx native began experiencing memory loss. The doctor hesitated to diagnose Lillian with Alzheimer’s disease due to her alertness and cognitive abilities. Then he noticed the elder woman’s shuffling and head movements, which were not unlike Parkinson’s—behaviors Norma had noticed for years. More visits to neurologists at Mount Sinai and Columbia Presbyterian caused only confusion until one doctor mentioned the possibility of a disease called Lewy Body Dementia. Norma did the research herself online. “I could not believe that she had every symptom,” she said during a recent phone interview.
Lewy Body Dementia (also known as LBD) is a neural disease characterized by a loss of cognitive abilities and motor control, and is closely related to Parkinson’s disease. The ailment has distinct symptoms—including motor disorders, hallucinations and REM sleep disturbances—however, some of the drugs used to treat symptoms in similar disorders such as Alzheimer’s and Parkinson’s can be dangerous for those with LBD. According to Dr. James E. Galvin, director of the Lewy Body Dementia Center at NYU’s Langone Medical Center, a typical antipsychotic medicine like haloperidol, normally used to treat mental disorders, can exacerbate various cognitive symptoms in patients with LBD and can also cause physical problems to the point of being fatal.
The Lewy Body Dementia Center is the first of its kind to treat LBD in the New York area, having opened in late September of this year. It works closely with the Lewy Body Dementia Association, a national group created to spread awareness and provide information for caregivers. The center provides the most up-to-date testing, analysis and palliative care guidance for those ill with LBD, which currently has no cure.
Over 1.3 million people in the United States are thought to suffer from LBD, yet few have ever heard of the affliction—including doctors. Compare that with an estimated 400,000 people suffering from multiple sclerosis, according to the National Multiple Sclerosis Society, and the approximately one million people in the United States infected with HIV, according to the Center for Disease Control, and it becomes apparent that more efforts need to be made to make people aware of LBD. According to Galvin, who is aided with the data analysis in “Caregiver Burden in Lewy Body Dementias”—a medical study published in several medical journals this past spring and summer (designed by Dr. Steven H. Zarit of Penn State University)—80 percent of LBD patients are misdiagnosed as having other diseases before receiving the proper diagnosis, going through an average of three different doctors.
“On average, it takes a caregiver at least 18 to 24 months before the proper diagnosis is achieved,” Galvin explained. “Before then, nobody knows what’s going on and the caregiver feels burdened, isolated and alone.”
Nowadays, Lillian Loeb lives in her daughter’s Long Island home, and Norma is her primary caregiver. The ride has not been an easy one—the needs of an LBD patient often change from week-to-week, with caregiving, as Norma describes it, like a full-time job. According to Norma, while she was first learning how to take care of her mother as the illness progressed, she learned more from the website of the Lewy Body Dementia Association (www.lbda.org, formed in 2004) than any doctor.
“They are the only organization that had any information,” Norma said. “They also had an online support group that was very helpful to me.”
After participating in discussions, a woman from the organization’s website asked Norma if she would help to create a monthly support group for caregivers, since there was no support system beyond the website in the tri-state area, or even as far away as Boston. Since 2007, Norma has started two monthly groups, one in Manhattan and one in Long Island. Both groups draw caregivers seeking support from the local population as well as from Westchester County and New Jersey.
“There’s not a person [involved in the groups] who hasn’t been thankful to hear from everybody that they’re not alone, to learn helpful things about their daily caregiving,” Norma said. “It’s so widely undiagnosed, there’s no awareness of it at all. Even GPs don’t know about it.”
Despite the difficulties associated with taking care of a loved one, especially a parent and the role-reversal of parents and children, Norma Loeb has no regrets, calling her choice the “best decision I ever made.” She cherishes the moments when she connects with her mother and the surroundings that allow her to live with a loved one instead of in a nursing home. Norma Loeb tells the members of her support groups to focus on the positive moments of communication—those are the moments they’ll remember.
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