"Every month we dip into our savings," Pat Boggs told CNN as she started to cry. "The hardest thing was to tell our son Ryan that he couldn't go back to college."
"We make cutbacks every day," added Mike. "I've worn the same pair of shoes for three years. Same coat. We rarely buy clothes. We don't do any home repairs and both of our cars are over 12 years old."
"I have not seen a doctor in over two years," said Pat. "Anything medically related, like doctor visits, or medication, those dollars all go to Mike."
"We've been reporting for a long time on the cost of Alzheimer's caregiving to the nation, but had anyone really looked closely at what that does to a family?" said Keith Fargo, director of scientific programs and outreach for the Alzheimer's Association. "It turned out that those who have family or friends with Alzheimer's are really struggling. At least 48% of those we talked to had to cut back on spending on themselves to take care of their loved one."
The survey quizzed more than 3,500 Americans who provide care or money at least once a month to family or friends with Alzheimer's about the impact of their caregiving on their own wallets. Researchers discovered care contributors spent an average of $5,155 of their own money caring for their loved one, with spouses and partners bearing the biggest burden -- an average of $12,000 a year. While adult children spent an average of $4,800 a year, a full 16% spent $10,000 or more.
Some families go hungry
What was most startling, Fargo said, is where the families had to cut expenses. Care contributors were 28% more likely to eat less or go hungry, Fargo said, and 20% cut back on their own medical care.
"They had to ask themselves, do I take mom to the doctor or go myself?" Fargo said. "Do I buy that prescription mom needs, or fill my own prescription?"
At least 13% of the caregivers surveyed sold personal belongings, most often a car, to try to make ends meet. Like Mike and Pat Boggs, another 11% cut back on their children's educational expenses.
"Another 35% of our sample had to cut back on hours at work to care for their loved one with Alzheimer's," said Fargo, "or lost their jobs or had to retire early. We found that the average income loss was over $15,000 a year.
"That's a double whammy. All of these additional expenses and less income, leading them to make really tough decisions on how to feed and care for their family."
"We see this all the time in our memory clinic," said Dr. Pierre Tariot, geriatric psychiatrist and director of Banner Alzheimer's Institute. "The findings unveil the family drama that dementia creates: people who have given up careers, cut back on their own medical care, quit traveling, and the like, all to support a loved one. It is common for families to feel burdened, stressed and depressed."
The situation for many families is not likely to improve. According to updated numbers in the Alzheimer's Facts and Figures report,
the cost of Alzheimer's care in the United States
in 2016 is expected to be $236 billion, an increase of $10 billion since 2015. That's due to inflation and an increasing number of baby boomers reaching the age when Alzheimer's is most likely to strike.
"Projections tell us that by 2050 there will be 13.8 million Americans with Alzheimer's," said Fargo, "with a potential cost to our society of $1.1 trillion."
Little understanding of cost of care
The survey also found that many families were unprepared for the cost of Alzheimer's care and often didn't understand their own financial situation. At least 30% of the caregivers surveyed thought they had purchased long-term health care insurance. In reality, only 3% had the insurance in place. Others thought services would be provided by the government.
"It is not uncommon for people to say, 'You mean Medicare doesn't cover that?' " said Beth Kallmyer, vice president of constituent services for the Alzheimer's Association. "They tell us they thought the government would pay for care in a nursing home, for example, and didn't realize they would not have the funds to pay for it. Families are really unprepared."
Mike and Pat Boggs didn't realize how tough it would be to get Social Security disability for Mike. They thought they would be able to access funds quickly enough to allow their 20-year-old son, Ryan, to start college.
"So he started his freshman year and was really thriving," said Pat. "But Social Security was denied the first time, the second time, and the next part of the process is to hire an attorney. He was upfront and told us to be prepared that we're not going to get Social Security for at least two years."
The next step was heartbreaking for the entire family.
"We are very honest and open with Ryan, and when we told him he wasn't going back to school he accepted that," said Pat with a catch in her voice. "We all agreed that he would come home and work and save his money and hopefully we can send him back to school later."
"I was sad, frustrated and depressed," said Mike. "But I can't work. Every day I have to think about what I have to do in advance, even walking and talking is getting more difficult."
Kallmyer said the United States needs to do a better job of helping families educate themselves on their own finances and what resources might be available in their local communities, such as adult day care centers, Meals on Wheels and homemaker services from the Department of Aging.
Banner's Tariot agrees. What is needed is "a new national standard of care. Between now and then, families will best be served by multidisciplinary teams working together to help families navigate the illness in a more effective and affordable way. We need to do everything we can to make help available now and in the longer run."
"What we are advocating for is legislation," said Kallmyer. "Our bill 'HOPE', which stands for 'Health Outcomes, Planning and Education' Act
, is in front of Congress right now. We are asking Medicare to cover a comprehensive family planning session. Imagine someone gets diagnosed, and a couple of weeks later they meet with support staff, early in the disease, to determine what they need to do to plan for the future."