Advancing Disease Knowledge
Only a brain autopsy at the time of death can provide confirmation that an individual suffered from a form of dementia. The intent of the brain bank program is to study brains of persons clinically diagnosed with a dementia and provide tissue for research after their deaths.
Families obtain significant benefits from the brain bank program. The brain autopsy will give a final confirmation of the disease. This brain donation can be involved in research that will help future victims of LBD and other forms of dementia. The information will be a part of the family medical history which can prove invaluable.
Brain donation for research is not a widely publicized subject, so many physicians and pathologists are not familiar with brain donation. Working with pathologists at your local hospitals and identifying the professionals in your area who are sensitive to the need for brain donation can greatly facilitate the donation process. Brain donation does not conflict with most religious perspectives and will not interfere with an open casket or other traditional funeral arrangements.
Brain Bank Programs
Harvard Brain Tissue Resource Center: http://www.brainbank.mclean.org/
The Florida Brain Bank: http://elderaffairs.state.fl.us/doea/BrainBank/
There are many support programs available through adult day programs and community centers. The National Area Agency on Aging has offices that serve every county in the U.S. Meals on Wheels programs, Veterans outreach organizations, parks and recreation departments and other local resources can be accessed by referrals from doctors and therapists. These kinds of programs are essential to keeping the person with LBD engaged in daily activities, enable professionals to do ongoing assessments, and to give the primary caregiver(s) much needed respite.
The Social Security Administration (SSA) has a compassionate allowance program in which workers diagnosed with dementia with Lewy bodies can qualify for Social Security disability benefits. Call the SSA at 800-722-1213 or visit http://www.ssa.gov/.
American Academy of Neurology: http://patients.aan.com/
Axovant Announces Negative Results for Intepirdine in Phase 2b HEADWAY and Pilot Phase 2 Gait and Balance Studies; Positive Trends in Efficacy Seen in Pilot Phase 2 Nelotanserin Study. Basel, Switzerland: Axovant Sciences Ltd.; January 8, 2018. http://investors.axovant.com/node/7386/pdf. Accessed January 25, 2018.
Family Caregiver Alliance: http://caregiver.org/
Lewy Body Dementia Association: http://www.lbda.org/
Lewy Body Dementia. Publication No. 13-7907. National Institutes of Health: 2013. Accessed at: http://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia.
National Association of Area Agencies on Aging: http://www.n4a.org/index.cfm
Span, Paula. A Form of Dementia that Is Often Misdiagnosed. New York Times 25 September 2012.
The Michael J. Fox Foundation for Parkinson's Research: https://www.michaeljfox.org/