LBDA Advances Understanding of Caregiver Burden


Getting a definitive diagnosis of Lewy body dementia (LBD) usually involves at least three physicians and an initial diagnosis of some other disease. Those observations are drawn from the Lewy Body Dementia Association’s (LBDA’s) Caregiver Burden Survey, launched in collaboration with members of LBDA's Scientific Advisory Council and Steven H. Zarit, PhD, an expert in caregiver burden in dementia and creator of the Zarit Caregiver Burden Interview. The survey will be featured in a poster session at the annual meeting of the American Academy of Neurology in Seattle, Wash., April 30, 2009. This poster session is one of four conference-related activities by LBDA to make physicians more aware of the challenges facing LBD families.

“Many people with LBD go years without an accurate diagnosis, losing the opportunity for important early intervention and risking exposure to potentially dangerous medication sensitivities. The majority of LBD diagnoses are ultimately made by neurologists, but once diagnosed, most people are being treated for their LBD symptoms by a primary care provider,” says James Galvin, MD, a member of the association’s Scientific Advisory Council and lead author. “This research highlights the need for increasing physician awareness and knowledge of LBD.”

Dr. Galvin's abstract is titled Lewy Body Dementia: the Caregiver Experience of Clinical Care.

Data from the caregiver survey also was presented by John Duda, MD, at the 6th International Congress on Mental Dysfunctions & Other Non-Motor Features in Parkinson’s Disease in Dresden, Germany. In his presentation, Dr. Duda reported that most caregivers experienced fear of the future for their loved ones, felt stressed, experienced a loss of social life, and were uncertain about what to do next. The majority of respondents also experienced some form of crisis within the past year, which usually included going to a hospital emergency room. Most caregivers reported moderate to severe burden and felt the people around them did not understand their burden. “These findings highlight significant unmet needs for LBD caregivers and provide potential targets for intervention to reduce caregiver burden,” Dr. Duda says.

Dr. Duda’s abstract is titled Understanding Caregiver Burden in Lewy Body Dementia.

LBDA also will exhibit at two upcoming national medical conferences. The first is the annual meeting of the American Academy of Neurology April 27 to April 31, in Seattle, Wash. Both staff and board members will be available by stopping by Booth #948. LBDA also is exhibiting at the annual scientific meeting of the American Geriatrics Society April 30 to May 1, 2009, in Chicago, Ill., and can be found at Booth #201.