CaringKind (formerly the Alzheimer’s Association, NYC branch) recently hosted the Lewy Body Dementia Resource Center of New York’s (LBD-NY) first educational seminar since its recent launch. Lewy Body Dementia: One of the Most Common Dementias You’ve Never Heard Of was held at CaringKind’s Manhattan offices to a large crowd of health care professionals and caregivers longing for information. Dr. Judith Ahronheim, clinical professor of medicine of New York Medical College, Norma Loeb, founder and executive director of LBD-NY, and Marisa Stefatos, director of programming of LBD-NY, spoke about the effects and symptoms of this little-known disease, as well as resources available to families.
More people have LBD than ALS, muscular dystrophy and cerebral palsy combined—yet it is still widely unknown. LBD is the second most common form of progressive dementia, affecting 1.4 million Americans. Despite its prominence, it is often misdiagnosed as Alzheimer’s disease, Parkinson’s disease or a psychiatric disorder. Actor Robin Williams, radio host Casey Kasem and actress Estelle Getty all had LBD.
The evening began with a warm welcome from Loeb, introducing herself as a previous caregiver for her mother who had LBD for 18 years, as well as informing the audience of her role as sole support group leader for LBD in New York and her motivation for founding the organization. A key portion focused on the complexities of the disease, the fluctuations that often accompany it, how to identify symptoms and behavioral issues, and why it is so often misdiagnosed. Ahronheim, also a previous caregiver to her husband who had LBD, shared with the audience the difficulties of her dual role as a wife and a physician. She shared her “less is more” approach with regard to prescriptions as the disease is difficult to navigate, coupled with sensitivities to medication. Ahronheim also identified hallucinations and delusions that are often accompanied by LBD and how to handle them. Stefatos, who has been a Manhasset resident for most of her life, as was her mother who had LBD, discussed her experience as caregiver, the benefits of therapeutic and social activities, and stressed how combinations of therapies derived from needs and interests of patients often lead to improved cognition, communication, physical ability and a better emotional state overall. She informed the audience that LBD-NY is creating many specialized activities for people with Lewy Body Dementia and caregivers, particularly on Long Island.
For information, visit www.lbdny.org or call the helpline at 516-218-2026.