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Are You Going Broke Caring for a Loved One With Dementia?

American caregivers are making painful sacrifices, a new report says

By Rita Rubin and SCAN Foundation

If the 15 million Americans who provide unpaid care for relatives and friends with Alzheimer’s disease and other dementias received just $12.25-an-hour for their efforts, they’d have racked up more than $221 billion in 2015, according to a report in March 2016.

That’s nearly half the net value of Walmart and about eight times the total revenue of McDonald’s, according to the 2016 edition of “Alzheimer’s Disease Facts and Figures,” compiled by the Alzheimer’s Association.

Cutting Back

Many go without necessities to be able to care for their loved one, according to a survey on which part of the report was based.

“Alarmingly, 20 percent of care contributors cut back on going to the doctor themselves, 11 percent cut back on buying medicine for themselves and an additional 11 percent cut back on their children’s educational expenses,” the report states. About one in eight care contributors said they sold personal belongings, such as a car, jewelry, furniture, electronics or a home, to help pay expenses for the person with dementia.

Compared to respondents who did not help care for someone with dementia, care contributors were more likely to struggle with being able to afford enough food for themselves and their family, the survey found. The data suggest that the high costs of helping to care for a person with dementia might contribute to food insecurity in many families, according to the report.

Overall, nearly half of the care contributors said that paying expenses for a relative or friend with dementia had forced them to cut back on spending on themselves in the previous year.

Burden Will Increase

The cost of dementia care is a big problem, the Alzheimer’s Association said. And it’s only getting bigger.

An estimated 5.2 million Americans 65 and older have Alzheimer’s disease, and 81 percent of them are 75 or older. A third of Americans 85 and older have the disease. The number of boomers who are 65 and older is increasing each year, so by 2025, the number of Americans in that age group with Alzheimer’s disease is expected to reach 7.1 million. By 2050, that number is expected to swell to 13.8 million.

While the Alzheimer’s Association recognized that caring for a relative or friend with dementia can be an economic burden, it hadn’t realized the scope of that burden, says Keith Fargo, director of scientific programs and outreach and medical and scientific relations at the organization, which is based in Chicago.

The Survey


To better understand the problem, the association conducted a nationwide poll of approximately 3,500 Americans. The findings are included in a “Special Report” section of the latest “Facts and Figures.”

The survey respondents were asked if they had a relative or friend with Alzheimer’s disease or another dementia. If they did, they were then asked if they’d paid for their relative’s or friend’s expenses at least once a month during the previous year and if so, how much they paid and the financial impact of those contributions. Respondents who had not paid expenses but had taken care of the person with dementia at least once a month during the previous year then answered questions about the impact of caregiving on their employment and spending.

Spending $5,155 Per Year on Caregiving

About one in seven survey respondents (502 people) said they had provided financial assistance and/or caregiving to a relative or friend with dementia (about nine in 10 of them were relatives of the dementia patient). On average, they spent $5,155 per year of their own money to take care of the patient, although the annual expenditures ranged from $1,000 to more than $100,000. Spouses spent an average of more than $12,000 a year, while adult children spent an average of about $4,800 per year. Food and other groceries were the most commonly reported expenses, followed by travel, medical supplies such as adult diapers, medications, non-medical in-home care and in-home health care.

More than half of the care contributors said they’ve had to go to work late, leave early and/or take time off to perform caregiving duties. In fact, about one in seven said they’ve had to take a leave of absence, while about one in eight said they had to go from working full-time to part-time. Roughly one in 12 said they decided to retire early due to caregiving.

Nursing Home Costs Not Covered

On top of the day-to-day economic impact on care contributors, “we also found an interesting finding in terms of people’s lack of knowledge about long-term care,” Fargo said, noting that only a third of the respondents knew that Medicare doesn’t pay for custodial care in nursing homes.

As a result, adult children might find themselves having to pay $80,000 to $90,000 a year for long-term care of a parent with Alzheimer’s or another cause of dementia, Fargo said.

“They’re spending their retirement savings to take care of their parents,” he added.

Rita Rubin is a former USA Today medical writer who now writes about health and science for publications including Next Avenue, U.S. News, WebMD and Read More
By SCAN Foundation
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