Caregiving and Lewy Body Dementia

Helen Bundy Medsger, LBD Peer Mentor, Support Group Facilitator and Support Services Volunteer, Lewy Body Dementia Association, is Heidi’s very special guest on today’s episode. For over 30 years, Helen has been the primary caregiver and health care advocate for two generations of her family who have suffered from Parkinson’s Disease with Lewy Body Dementia, and three members of her family have succumbed to the disease: her father, sister and youngest brother. In addition to being an advisor to Lewy Body Ireland, she is the facilitator of the North Bay Lewy Body Dementia Support Group, is a support services volunteer for the Lewy Body Dementia Association, a trained LBD caregiver peer mentor, and a member of the University of California – San Francisco (UCSF) Memory & Aging Center’s Family Advisory Council. Helen is also a member of the Dementia Community Research Advisory Panel at the Global Brain Health Institute, a former LBD consultant to the Care Ecosystem Study at UCSF’s Memory & Aging Center, and a speaker for various organizations on the topic of caregiving LBD. Most recently, she was federally appointed one of two caregiver representatives to the Advisory Council on Alzheimer’s Research, Care, and Services under the U.S. Dept. of Health and Human Services making recommendations to the HHS Secretary and Congress. Heidi and Helen open the episode by discussing the traumatic experience of trying to treat and care for a family member with Lewy Body Dementia, especially when there was a lack of research and a high misdiagnosis rate.  Helen details the symptoms and behavioral changes her father underwent, and notes that no medications slow or stop the progression of LBD.  To those with family members suffering from LBD, Helen emphasizes how important it is to allow the patient to express their desires early in the disease process when they’re still capable of doing so, and highly recommends that social and physical engagement is absolutely paramount for LBD patients. Helen adds that, in addi