The Lewy Body Dementia Resource Center (LBDRC) was formed for the purpose of raising crucial awareness of Lewy Body Dementia (LBD) and to offer urgently needed help in New York for the many families who have lacked the services they need primarily because people do not know of the disease.
In addition to providing pertinent information about LBD, LBDRC’s website–and our Helpline–offer information on services specifically in the New York area, including but not limited to: recommendations of neurologists specializing in LBD, adult day care programs with dedicated support, physical therapists and occupational therapists with knowledge of LBD, qualified home health aides who are familiar with and sensitive to the many needs of a person with LBD, house call programs, hospice agencies, and other resources. We relate which medications are suggested by LBD experts to be avoided because of their potential life-threatening effects.
Our objective is for Lewy Body Dementia to become as common a name as Alzheimer’s disease or Parkinson’s disease—and for the importance of this distinction to be understood. A large part of our mission will focus on outreach and speaking engagements in order to educate the healthcare community and the public on this little known disease.
It’s crucial that we bring awareness and understanding of LBD to health care professionals in every hospital and nursing home so that there are no longer misdiagnoses in the majority of cases. This may entail several meetings within each facility depending on the level of care given by each specialized person and their department. As an example, it is vital that emergency room personnel become familiar with the disease. This knowledge will prevent patients from being given medications—particularly certain antipsychotics—that can severely impair them.
A primary goal is to help caregivers in every way possible. Caregiving itself has hundreds of legs. Caring for someone with LBD has even more. Alleviating the major burdens of locating the right doctors, experienced nurses’ assistants, and hospice agencies–as well as the smaller problems of knowing which local surgical supply store can help or where the nearest veterans’ organization is located–is our purpose.
Key to the essence of this resource center is a sense of community. Our aim is to provide a place you can turn to for help and information that is not offered anywhere else for families living with LBD—with caring and loving support from those who have lived through, and learned, the best ways to help those who suffer from this debilitating disease.