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April 29, 2013 at 10:24 AM
Alzheimer’s caregivers and people with Alzheimer’s disease crowded into a conference room in Washington today to beg the Advisory Council on Alzheimer’s Research, Care and Services to get help.
The council — a body created by the National Alzheimer’s Project Act of 2010 (NAPA) — is putting the finishing touches on the first annual update to the National Plan to Address Alzheimer’s Disease, a document that’s supposed to help the country come up with strategies for preventing or treating Alzheimer’s by 2025.
The council mentioned the need for improvements in long-term care (LTC) financing briefly in the first version of the report, and it is planning to add a provision calling for the U.S. Department of Health and Human Services (HHS) to make it clear that the Health Insurance Portability and Accountability Act (HIPAA) privacy provisions let care providers work with family members to come up care plans for people with dementia.
The council today met to hear reports on how health agencies in other countries are addressing dementia, then opened up the floor for public comments.
MaryAnne Sterling reported that she and her husband have spent about $250,000 on dementia-related care for their parents.
Michael Ellenbogen, an author who has early-stage Alzheimer’s, said he sees a lack of funding for research, a lack of geriatric care providers, and a lack of anyone with dementia on the advisory council or on many other bodies shaping policies that affect people with dementia.
