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.
Dr. Stephen Hume, a psychologist who helped start one of the first private employee assistance companies in Massachusetts, said he learned he has Alzheimer's five years ago. Since then, his income has dropped 75 percent, and he has had to declare bankruptcy.
"Despite this, I'm not eligible for Medicaid," Hume said.
Like Ellenbogen, Hume emphasized the need for the advisory council to include people with early-stage or mid-stage dementia. He also urged the council to set up a working group to focus on the long-term services needs of people with early-stage and mid-stage dementia.
Gail Hunt, who appeared on behalf of the National Alliance for Caregiving, asked the council that Alzheimer's and long-term care (LTC) effectiveness research consider the needs and wishes of patients and families as well as cost.
"Certainly, cost is an issue, but it's not the only issue," Hunt said. "We can't just foist it on the caregivers."
No representatives for insurer, insurance producer or long-term care (LTC) provider groups spoke during the public comment session.