Lewy Body Dementia Association Supports Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act (S.709/H.R. 1507)

Lewy Body Dementia Association
912 Killian Hill Road, SW
Lilburn, GA 30047
Phone 404-935-6444

Elizabeth Patrick
Marketing and Communications Manager
Lewy Body Dementia Association
Direct 404-549-4244


 ATLANTA – (August 13, 2013) – The Lewy Body Dementia Association announced today that together with Leaders Engaged on Alzheimer’s Disease (LEAD) they are signing on to support and call for Congressional co-sponsorship of the Health Outcomes, Planning and Education (HOPE) for Alzheimer’s Act (S.709/H.R. 1507). The HOPE for Alzheimer’s Act furthers the advances made by the National Alzheimer’s Project Act (NAPA; Public Law 111-375) and implementation of the National Plan to Address Alzheimer’s Disease (National Plan) that NAPA envisioned.

More than 5 million Americans have Alzheimer’s disease and millions more have vascular, Lewy body or frontotemporal dementia. Many are not diagnosed or know all of the treatment options available to them. The National Plan calls for ensuring timely and accurate diagnosis, enhancing care quality and efficiency, and educating and supporting people with dementia and their families.

The Advisory Council on Alzheimer’s Research, Care, and Services specifically recommended that Congress and CMS redesign Medicare coverage and reimbursement to encourage appropriate diagnosis of Alzheimer’s disease and related disorders and provide care planning to diagnosed individuals and their caregivers.

An accurate and timely diagnosis, medical record documentation and access to care planning leads to better outcomes for individuals with dementia as well as their caregivers. As many as half of the more than 5 million Americans with Alzheimer’s disease have never received a formal diagnosis. A study in the Journal of General Internal Medicine indicated only 19 percent of people over age 65 with dementia had a diagnosis recorded in their medical record.

“An accurate dementia diagnosis is as vital as early diagnosis,” stated Angela Taylor, Director of Programs at the Lewy Body Dementia Association. “Lewy body dementia (LBD) is the most misdiagnosed dementia, typically diagnosed first as Alzheimer’s disease or a movement or psychiatric disorder. This leaves families uninformed and unprepared for the more complex array of symptoms in LBD, as well as potentially dangerous, severe medication sensitivities common in Lewy body dementias.”

The HOPE for Alzheimer’s Act will help ensure that individuals receive an appropriate diagnosis, and that they and their family get critical information about the disease and available care options, which leads to better outcomes. The bill would combine the existing Medicare benefits for diagnosis and care planning into a single package of services that includes: 1) a comprehensive clinical diagnostic evaluation for Alzheimer’s disease; 2) care planning services to provide newly-diagnosed individuals, their personal representative, or family caregivers information about options for treatment and support; and 3) documentation of both the diagnosis and any care planning services in the beneficiary’s medical record.

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The Lewy Body Dementia Association The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of the Lewy body dementias (LBD), supporting people with LBD, their families and caregivers, and promoting scientific advances. Through outreach, education and research, LBDA supports those affected by Lewy body dementias. To learn more about LBD and LBDA please visit

Leaders Engaged on Alzheimer’s Disease (LEAD) is a diverse and growing coalition of 60 member organizations including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, and biotechnology and pharmaceutical companies. The LEAD Coalition works collaboratively to focus the nation’s strategic attention on Alzheimer’s disease and related disorders and to accelerate transformational progress in care and support, detection and diagnosis, and research leading to prevention, effective treatment and eventual cure. One or more participants may have a financial interest in the subjects addressed.