First, Alzheimer鈥檚 takes a person鈥檚 memory. Then it takes their family鈥檚 money.
That鈥檚 the central finding of a published Wednesday by the Alzheimer鈥檚 Association on the financial burden friends and families bear when they care for someone with dementia.
鈥淲hat we found was really startling,鈥� says , vice president of constituent services for the organization. 鈥淭he cost of paying for care was putting people in a situation where they had to make really difficult choices around basic necessities 鈥� things like food, medical care, transportation.鈥�
The report, based on a survey of more than 3,500 Americans contributing to the care of someone with dementia, also found that:
- Friends and family spent, on average, more than $5,000 a year of their own money on the expenses of their loved one with dementia, ranging from food to adult diapers.
- More than one-third of these contributors to care who had jobs had to reduce their hours or quit.
- To make ends meet, about 13 percent had to raise money by selling personal belongings, such as a car.
- Nearly half of the care contributors surveyed had to dip into their savings or retirement funds.
The Alzheimer鈥檚 Association decided to conduct the survey, Kallmyer says, after hearing lots of stories of financial hardship from friends and family members of people with Alzheimer鈥檚. One of those stories came from Paul and Sarah Hornback, who live in central Kentucky.
Paul Hornback was a senior engineer and analyst for the U.S. Army when was diagnosed with Alzheimer鈥檚 six years ago. He was just 55.鈥滻 was kind of at the height of my career and then this dreadful diagnosis came and it just wiped out every plan I had for my career,鈥� he says.
Hornback and his wife, Sarah, had to re-imagine their future. Then they began to .
The Hornbacks had borrowed a lot of money to put three children through college. Now Paul was being forced to retire early and they wouldn鈥檛 have his salary to pay off the debt.
鈥淲e had to sell basically everything but my wife鈥檚 car and an old truck that I kept to drive around here on the farm,鈥� he says.
At first, Sarah Hornback kept working as a school administrator. But about 18 months ago, she also had to retire early 鈥� to care for her husband.
鈥淚t got to the point where it just wasn鈥檛 safe for him to stay alone just because of memory and decision making,鈥� she says. 鈥淗e might leave the stove on or he might decide that there was a tree branch bothering him and he should get out the chain saw.鈥�
Paul Hornback lost his engineer鈥檚 salary when diagnosed with Alzheimer鈥檚 at age 55. He still tends chores on his farm, but worries about how his wife and kids will pay off the medical debt as his health deteriorates. (Courtesy of the Hornback family)
The Hornbacks are getting by on their early retirement income. But Sarah Hornback says the real financial problems will start when she can no longer care for her husband on her own.
鈥淲hen he has to go into full-time care, I鈥檓 going to be at the poverty level, basically,鈥� she says.
The financial burden is greatest for people like the Hornbacks, who have to pay more while working less, Kallmyer says.
鈥淚t鈥檚 really a double whammy,鈥� she says. 鈥淧eople are sometimes not able to work as much or not able to work at all in order to provide care, and then they鈥檙e paying money out of pocket on top of that.鈥�
When he was 59 years old, Greg O鈥橞rien was diagnosed with early-onset Alzheimer鈥檚 disease. Five years later, he is speaking publicly about his experience, even as his symptoms worsen.
The survey also found that about two-thirds of Americans believe Medicare will help cover nursing home costs, or aren鈥檛 sure whether it will. It won鈥檛.
鈥淲hat that tells us is that families are ultimately unprepared for that really, really significant cost of long-term care,鈥� Kallmyer says.
Clinics that specialize in Alzheimer鈥檚 often try to help family members navigate the financial aspects of care.
鈥淚t鈥檚 a challenge for almost every family that we see,鈥� says , a geriatric psychiatrist and director of the Banner Alzheimer鈥檚 Institute in Phoenix. 鈥淲e do see folks who are lucky and have considerable resources. But even for those families it鈥檚 a major financial obligation.鈥�
And it鈥檚 not realistic to expect every family to absorb the cost, Tariot says.
鈥淯ltimately,鈥� he says, 鈥渟ociety will need to think of other ways of funding care for our elders as they become vulnerable.鈥�