Some caring for Alzheimer's patients make "startling" sacrifices

Almost half of the people caring for loved ones with Alzheimer's disease are sacrificing their own financial security to do so, and many are setting aside their own basic needs, a new nationwide survey shows.

According to the Alzheimer's Association's 2016 Alzheimer's Disease Facts and Figures report, many caregivers put off their own medical care, sell their cars to raise money, draw from funds meant for their kids' education, and even cut back on food to support a loved one with Alzheimer's.

On average, the report found they spent more than $5,000 a year of their own money to care for someone with Alzheimer's disease, but amounts varied widely and some spent far more.

Alzheimer's, the most common form of dementia, slowly robs people of memory and eventually leaves them completely dependent on others.

"There's no way to slow it, prevent it or cure it," Beth Kallmyer, Vice President of Constituent Services for the Alzheimer's Association, told CBS News.

When it comes to those caring for Alzheimer's patients, the new report shows sacrifices may include:

  • Cutbacks in personal spending. Almost 48 percent of the relatives or friends caring for Alzheimer's patients said they have decreased their own personal spending and needs over the past year, or have drawn from savings and retirement accounts, to scrape together money needed for care expenses.
  • Hunger. Almost a third said they ate less, and one out of five reported they sometimes went hungry because they didn't have money for food.
  • Going without medical care. Twenty percent cut back on their own doctor visits.
  • Selling personal effects. Thirteen percent sold personal belongings, typically a vehicle, to help cover the patient's needs.
  • Swallowing up education savings. Eleven percent had to pull back on spending for a child's education.
  • Income loss. More than one-third lost income (an average of $15,194 compared to the previous year) due to reduced work hours or stopping work altogether in order to meet caregiving demands.

The report says that in all, 15.9 million family and friends provided 18.1 billion hours of unpaid care in 2015 to Alzheimer's patients and others with dementia -- care valued at an estimated $221.3 billion.

"We know Alzheimer's is one of the costliest diseases out there," said Kallmyer.

It can be hard to wrap your head around such huge numbers, but the survey sheds light on what those costs mean on an individual and family level.

"What we found was startling. They're making really hard decisions because they want to make sure that person with dementia is being cared for. They are sacrificing their own needs and health care, and making decisions about their employment -- cutting back, and in some cases working more. It's become very personal for these families," said Kallmyer.

While Alzheimer's experts have long been aware that caregivers forgo their own health needs due to the more pressing medical needs of their Alzheimer's patient, the fact that many are going hungry was an eye opener, Kallmyer said.

"That's pretty stark."

The survey also revealed that many people don't realize most insurance does not include nursing home and in-home nursing care for dementia patients.

"Two-thirds of them incorrectly believe Medicare covered long-term care like nursing homes. There's a tremendous knowledge gap," Kallmyer said. Very few families invest in long-term care insurance policies to help with such expenses.

Today, 5.4 million Americans have Alzheimer's disease. By 2050, that number is estimated to climb to 13.8 million, according to the Alzheimer's Association.

Kallmyer recommends people start financial planning as early as possible for old age and consider the possibility that Alzheimer's could impact them or a loved one.

Financial planning "doesn't solve all the problems ahead but it can solve some of them," she said.

"When you're making decisions in a crisis, you generally have fewer choices. Being educated in the moment really helps empower you."

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    Mary Brophy Marcus covers health and wellness for CBSNews.com