WASHINGTON • A St. Louis director of a nonprofit that helps families care for Alzheimer’s sufferers told Congress Wednesday that there was a “national crisis” because of “15 million unpaid dementia caregivers who need help today.”
Lisa Baron founded Memory Care Home Solutions 16 years ago after her experiences helping to care for a mother-in-law who suffered from Alzheimer’s.
Appearing before the Senate Special Committee on Aging, Baron said that her nonprofit, because of “generous” donations, helps primarily low-income families who are struggling to care for someone with the disease. More than half of her organization’s clients have incomes of $20,000 or less, she said, and the services are provided at no cost.
“Our family was blessed with educational and financial resources, yet nothing prepared us for Alzheimer’s disease,” she told the committee, which included Sen. Claire McCaskill, D-Mo..
Baron called it a “nightmare” and said that the family was most concerned about whether her father-in-law was getting the support and care necessary to care for his wife.
She called her program “a model that can be expanded and replicated throughout the United States,” by going “directly into the homes” to help train and prepare families to treat the disease.
The hearing heard updates on federal efforts toward finding a cure for Alzheimer’s by 2025. But Baron told the subcommittee that families now caring for someone should not be neglected in the meantime. Citing national statistics, she said that Alzheimer’s and other dementia-related diseases cost $236 billion to treat in 2015. An estimated 5.4 million people have the disease.
McCaskill said studies predicted that the costs of treatment could reach $1 trillion annually by 2050 if there is no cure.
McCaskill said that about one of every three dollars spent on Medicaid nationally went to long-term care, “much of that for people with Alzheimer’s disease,” and that that ratio was probably higher in Missouri.
Citing an Alzheimer’s Association study, McCaskill said the average family spent about $5,000 out of pocket annually to care for loved ones with Alzheimer’s.
“These numbers aren’t sustainable for our government, and they’re certainly not sustainable for the families,” she said.
Baron said Memory Care Health Solutions trained family caregivers on how to prevent or treat side effects of Alzheimer’s, including dehydration, urinary tract infections and falls. It also helps provide such things as door alarms for when people with Alzheimer’s leave the house.
The committee heard other witnesses talk about efforts to cure and treat the disease. The actor David Hyde Pierce, a long-time activist on Alzheimer’s whose grandfather died from the disease, told the committee that it was an “escalating national disease.”
But, he said, “we can bring Alzheimer’s disease to its knees.”
Senate Aging Committee Chairman Susan Collins, R-Maine, said that research funding for an Alzheimer’s cure — now just under $1 billion — remained “disproportionately low” compared with other diseases and that “this is no time to take our foot off the accelerator.”
Dr. Ronald Petersen, chairman of the Advisory Council on Alzheimer’s Research, Care and Services for the National Plan to Address Alzheimer’s Disease, told the committee that while research funding has increased, more is needed. Asked if progress in confronting the disease had been made, he said: “The short answer is yes, but — and there is a caveat — there is more work to do.”
He said that the cost of treating Alzheimer’s now surpassed those for heart disease and cancer.
Without a cure, he said, “this may be the single disease that bankrupts the health care system.”
By: Chuck Raasch St. Louis Post-Dispatch