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Learning about Lewy Body Dementia for Our Loved Ones
It’s difficult to believe that several years ago I never heard of Lewy Body Dementia. It is the…
WHAT IS THE LEWY BODY DEMENTIA RESOURCE CENTER (LBDRC)?
The Lewy Body Dementia Resource Center (LBDRC) is a charitable 501(c)(3) non-profit organization created to provide personalized essential resources and information to people with LBD, caregivers, and medical professionals. Founder and Executive Director, Norma Loeb, launched LBDRC in New York to provide LBD families with information on a local level and with a personalized approach. After her mother, Lillian, was misdiagnosed with several diseases—and eventually diagnosed with LBD—Norma realized there were very little resources available. What was even more disturbing to her was that few medical professionals understood how to diagnose or treat LBD. She soon discovered that patients were not only generally misdiagnosed but were also being mistreated with certain antipsychotic medications which could lead to severe side effects or potentially fatal results. In order to help bring awareness to LBD, Norma served on the board of the Lewy Body Dementia Association for three years and facilitated the only two LBD support groups in New York (in Manhattan and Nassau County) which have been taking place for over ten years. LBDRC now runs two additional support groups in Westchester and Suffolk Counties.
In 2016, together with four other former LBD caregivers, Norma launched the LBDRC website which is dedicated to providing resources to LBD families on a local level and with a personalized touch. Through its Helpline (516-218-2026), their team provides individualized guidance and information not limited to the following:
- Information to help foster early diagnosis and enhance the quality of life for people with LBD and their care partners
- Neurologists specializing in LBD
- Adult day care programs with dedicated support
- Physical therapists and occupational therapists with knowledge of LBD
- Qualified home health aides, house call programs, hospice agencies, and much more
- Information on medications that have been known to worsen the symptoms of LBD
