“It’s about people,” said U.S. Rep. Hank Johnson, a Georgia Democrat.
Johnson was referring to proposed legislation (H.R. 1507) to provide enhanced services for those affected by dementia, including Alzheimer’s disease. It’s the Health Outcomes, Planning, and Education Act, also known as the HOPE Act.
If passed, the bill would provide Medicare coverage for clinical diagnosis of Alzheimer’s and treatment planning, and would require documentation of evaluation and any care planning in an individual’s medical record. Johnson is an originating co-sponsor of the bill, which would amend title XVIII of the Social Security Act.
“Alzheimer’s is a devastating disease that not only robs patients of their essence, but has huge implications for their loved ones,” Johnson said.
Currently more than 5 million Americans suffer from Alzheimer’s disease, making it the sixth leading cause of death for those 65 and older in the United States. According to the Alzheimer’s Association, the cost of caring for those with Alzheimer’s and other types of dementia is expected to total about $203 billion in 2013, with the estimated cost increasing to $1.2 trillion (in today’s dollars) by mid-century.
In Georgia, there were 120,000 people with Alzheimer’s disease in 2010, and the number is expected to grow to 160,000 by 2025, according to a 2012 Alzheimer’s Association report.
Along with a similar U.S. Senate bill, the House legislation co-sponsored by Johnson is expected to be taken up in the upcoming session of Congress.
Johnson was speaking last week to advocates for the bill, who discussed the personal hardships they encountered when a loved one developed Alzheimer’s.
The congressman’s guests in his Lithonia office shared stories of how their own lives changed when a family member became unable to dress, bathe or have a meal without assistance. Taking on the responsibility of caring for a relative with dementia forced some of these people to give up their jobs or even relocate out of state.
Daily care of an Alzheimer’s patient is overwhelming for many families. And because the disease is frequently associated with advanced age, many of the close family members who try to care for a patient are themselves no longer young or vigorous.
“It’s not a Democratic or Republican issue,” said Karla Porch of Providence Hospice in Stockbridge. “It’s not black or white.”
Porch added that dementia can touch rich families as easily as poor ones, and almost everyone knows someone who has been adversely affected by caring for an Alzheimer’s patient.
And the extent of the medical crisis is not even fully documented. According to the Alzheimer’s Association, as many as half of the individuals who meet the diagnostic criteria for dementia have never been formally diagnosed with it.
“It’s a top priority for the Alzheimer’s Association,” said Kathy Simpson, director of advocacy for the organization. “One goal is to increase medical diagnosis of Alzheimer’s disease,” she said. That would help lead to better outcomes for those Americans living with Alzheimer’s, as well as for people with other forms of dementia, she said.
In addition to better outcomes and earlier opportunities for a diagnosis, documentation in the individual’s medical record is critically important for health care coordination. The ability to easily transition patients from a family home to a day care center or to another facility gives the patient’s caretakers a much-needed break.
If the legislation passes, the hope is that health care providers can address complications in Alzheimer’s management just as they would with other chronic conditions, such as heart disease and diabetes.
Lawmakers at the state level are also working to improve care for Georgians with Alzheimer’s.
The Georgia General Assembly has passed legislation that created the Georgia Alzheimer’s and Related Dementias State Plan Task Force. That task force is now assessing the current and future effects of Alzheimer’s disease and other forms of dementia on the state.
“The statistics are daunting,” said state Sen. Renee Unterman, a Republican who chairs the Senate Health and Human Services Committee, as she introduced the bill in December. “Georgia must be prepared with an active plan to share the burden of taking care of its citizens who are likely to require government assistance in the final stages of their lives.”
Judi Kanne, a registered nurse and freelance writer, combines her nursing and journalism backgrounds to write about public health. She lives in Atlanta.