Neurodegenerative Disease Caregivers Needed for Research into Caregiver Grief


Angela Taylor
Lewy Body Dementia Association
(404) 935-6444 ext. 201

Atlanta, GA - October 17, 2011 - The Lewy Body Dementia Association (LBDA) announces the launch of its second major caregiver research project, “Caregiver Grief in Neurodegenerative Diseases.”  This research will explore whether the anticipatory grief experienced during the caregiving process differs among caregivers of people with four progressive neurodegenerative diseases:  Lewy body dementia (LBD), Parkinson’s disease, Alzheimer’s disease, or frontotemporal degeneration.  The study will also assess quality of life and caregiver well-being among caregivers of these diseases.

Based on previous studies, dementia caregivers frequently experience high levels of stress, depression and poor health. Ultimately, this contributes to the decline in quality of life for both the caregiver and the person with dementia, as well as higher rates of institutionalism for the person with dementia.

Primary investigator, James Galvin, MD, professor of Neurology and Psychiatry at New York University of New York University said, “By increasing the understanding of anticipatory grief that is experienced in caregiving, physicians will have a better understanding that for nearly every person with a neurodegenerative disease there is a second patient – the caregiver.”  Dr. Galvin is a member of the Lewy Body Dementia Association Scientific Advisory Council and also serves on LBDA’s Board of Directors.

Based on an earlier study led by Dr. Steven Zarit of Penn State University, early and distinguishing characteristics of Lewy body dementias are associated with higher levels of LBD caregiver subjective burden, over and above the effects of typical stressors found in other types of dementia. Key factors in LBD caregiver burden included behavioral problems, an impaired ability to perform activities of daily living, the LBD caregiver’s sense of isolation, and challenges with the diagnostic experience. 

“Early identification of caregiver grief, well-being and quality of life will allow for optimum psychosocial intervention for depression and referral to community resources, like local caregiver support groups and online caregiving communities such as ones found at the LBDA website,” stated Angela Herron, president of LBDA’s Board of Directors. 

LBDA invites people who are currently providing care for someone diagnosed with Lewy body dementia, Alzheimer’s disease, Parkinson’s disease or frontotemporal degeneration to participate in the survey.  Internet access is required to participate in the study.   Funding for this project has been provided by the Lewy Body Dementia Association and media sponsors include the Family Caregiver Alliance and the Alzheimer’s Foundation of America.

An estimated 500 caregivers (who are currently providing care) for each different disease being studied are needed.   To learn more about the survey, visit


About LBDA

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA's Scientific Advisory Council is comprised of leading experts from the United States, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit

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