Neurodegenerative Disease Caregivers Needed for Research into Caregiver Grief

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Neurodegenerative Disease Caregivers Needed for Research into Caregiver Grief

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, 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. 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 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 http://www.lbda.org/go/caregiversurvey.