Connecticut has a high prevalence of Medicare beneficiaries living with Alzheimer’s disease or other dementias, often placing an enormous financial strain on caregivers who are spending thousands of dollars a year on care, reports show.
“Alzheimer’s is the most expensive disease in America,” said Jennifer Walker, vice president of communications and advocacy for the Connecticut chapter of the Alzheimer’s Association. “The cost of care is very high.”
Medicare covers most fees for doctor visits, and some hospitalization, if needed; but other costs associated with care—including home health services, transportation, diapers for incontinence—are not covered. People with Alzheimer’s often suffer from other chronic illnesses such as diabetes, heart and hypertension, which add to the out-of-pocket costs for care.
The financial burden is forcing families who rely on Medicare to tap into retirement savings, cutback on food and medical care for themselves, reduce work hours or quit work altogether to be caregivers, according to the Alzheimer’s Association report Alzheimer’s Disease Facts and Figures. A recent association survey of 3,500 people nationwide found 28 percent of caregivers lost an average of more than $15,000 in annual income from reducing or quitting work to provide care.
In Connecticut, the prevalence of Alzheimer’s or another form of dementia among Medicare beneficiaries is 11.9 percent, according to 2014 data recently released by the Centers for Medicare & Medicaid Services (CMS). Only Texas, with 12 percent, topped Connecticut. The national average is 10.3 percent.
About 74,000 people in Connecticut have Alzheimer’s and that number is projected to grow to 80,000 by 2020.
In 2015, there were about 177,000 people in Connecticut caring for loved ones with Alzheimer’s and other dementias, providing 202 million hours of unpaid care valued at $2.5 billion, according to the association’s report.
Patricia Lowe of Ridgefield worries that caring for her 80-year-old husband, Frank, who was diagnosed with Alzheimer’s in 2010, will push her into financial ruin. She is his sole caregiver.
“It’s a tsunami,” she said of the financial strain. With Social Security as the couple’s only source of income and Medicare covering a fraction of her husband’s medical costs, she worries about expenses she foresees coming down the pipeline.
The only thing keeping their costs under control now, she said, is that her husband can still live at home. The couple decided two years ago to forego his medications and frequent doctor’s appointments instead relying on more natural and holistic remedies.
The Medicare system, “is a mess, and it’s a mess on a number of levels,” said Angela Mattie, professor and chair of healthcare management and organizational leadership at Quinnipiac University’s School of Business.
“We don’t have our long-term care financing the way we should have our long-term care financing in this country,” Mattie said. “There’s no simple solution; these things are politically fought and fought.”
Medicaid, not Medicare, typically reimburses some of the cost of custodial care for those who can’t afford long-term care insurance, she said, and someone must “basically become a pauper to get on Medicaid. Is that how we want to treat people in this country?”
This year total payments for health care, long-term care and hospice care are expected to be $236 billion for those with Alzheimer’s and other dementias, and nearly half of those costs will be paid by Medicare, according to the association. Nearly one in every five Medicare dollars is spent on Alzheimer’s and dementia expenses, and it is on track to rise to one in every three dollars by 2050, according to the association.
According to the association, costs for long-term care services nationwide on average include: $220 per day ($80,300 per year) for a semi-private room in a nursing home, $250 per day ($91,250 per year) for a private room in a nursing home, $3,600 per month for basic services in an assisted living facility, $20 an hour for a home health aide and $59 a day for adult day services.
Lowe, who attends a support group for Alzheimer’s caregivers, foresees massive expenses looming.
“I know what the future holds,” she said. “I have seen people who have had to sell their houses.”
Lowe said, “What nest egg we have right now probably wouldn’t cover three years. Having to live this way is very difficult. There is no way I could afford to put him in a nursing home, certainly not in this area [Fairfield County], without completely bankrupting us.”
She said, “This disease is a journey,” and Lowe tries to see silver linings wherever she can. “We live. We don’t dwell. We’re not victims.”