Diagnosis in Question
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-oldbronx native began experiencing memoryloss. the doctor hesitated to diagnoselillian with alzheimer's disease due to heralertness and cognitive abilities. then henoticed the elder woman's shuffling andhead movements, which were not unlikeparkinson's-behaviors norma had noticedfor years. more visits to neurologists atmount sinai and columbia presbyteriancaused only confusion until one doctormentioned the possibility of a disease calledlewy body dementia. norma did theresearch herself online. "i could not believethat she had every symptom," she saidduring a recent phone interview.
lewy body dementia (also known aslbd) is a neural disease characterized by aloss of cognitive abilities and motor control,and is closely related to parkinson's disease.the ailment has distinct symptoms-including motor disorders, hallucinationsand rem sleep disturbances-however,some of the drugs used to treat symptomsin similar disorders such as alzheimer's andparkinson's can be dangerous for those withlbd. according to dr. james e. galvin,director of the lewy body dementia centerat nyu's langone medical center, a typicalantipsychotic medicine like haloperidol,normally used to treat mental disorders,can exacerbate various cognitive symptomsin patients with lbd and can also causephysical problems to the point of being fatal.
the lewy body dementia center is thefirst of its kind to treat lbd in the new yorkarea, having opened in late september of thisyear. it works closely with the lewy bodydementia association, a national groupcreated to spread awareness and provideinformation for caregivers. the centerprovides the most up-to-date testing, analysisand palliative care guidance for those ill withlbd, which currently has no cure.
over 1.3 million people in the unitedstates are thought to suffer from lbd,yet few have ever heard of the affliction-including doctors. compare that withan estimated 400,000 people sufferingfrom multiple sclerosis, according to thenational multiple sclerosis society, andthe approximately one million people in theunited states infected with hiv, accordingto the center for disease control, and itbecomes apparent that more efforts needto be made to make people aware of lbd.according to galvin, who is aided withthe data analysis in "caregiver burdenin lewy body dementias"-a medicalstudy published in several medical journalsthis past spring and summer (designedby dr. steven h. zarit of penn stateuniversity)-80 percent of lbd patients aremisdiagnosed as having other diseases beforereceiving the proper diagnosis, going throughan average of three different doctors.
"on average, it takes a caregiver atleast 18 to 24 months before the properdiagnosis is achieved," galvin explained."before then, nobody knows what's goingon and the caregiver feels burdened,isolated and alone."
nowadays, lillian loeb lives in herdaughter's long island home, and normais her primary caregiver. the ride has notbeen an easy one-the needs of an lbdpatient often change from week-to-week,with caregiving, as norma describes it, likea full-time job. according to norma, whileshe was first learning how to take care ofher mother as the illness progressed, shelearned more from the website of the lewybody dementia association (www.lbda.org,formed in 2004) than any doctor.
"they are the only organization thathad any information," norma said. "theyalso had an online support group that wasvery helpful to me."
after participating in discussions, awoman from the organization's website askednorma if she would help to create a monthlysupport group for caregivers, since there wasno support system beyond the website in thetri-state area, or even as far away as boston.since 2007, norma has started two monthlygroups, one in manhattan and one in longisland. both groups draw caregivers seekingsupport from the local population as well asfrom westchester county and new jersey.
"there's not a person [involved in thegroups] who hasn't been thankful to hearfrom everybody that they're not alone,to learn helpful things about their dailycaregiving," norma said. "it's so widelyundiagnosed, there's no awareness of it atall. even gps don't know about it."
despite the difficulties associated withtaking care of a loved one, especially a parentand the role-reversal of parents and children,norma loeb has no regrets, calling herchoice the "best decision i ever made." shecherishes the moments when she connectswith her mother and the surroundings thatallow her to live with a loved one instead ofin a nursing home. norma loeb tells themembers of her support groups to focus onthe positive moments of communication-those are the moments they'll remember.