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Here's How Much Caregivers Pay Out-of-Pocket

A survey finds helping a family member can derail your retirement

By Sue Campbell and SCAN Foundation

Editor's note: This article is part of a year-long project about aging well, planning for the changes aging brings and shaping how society thinks about aging. 

Many of us in our 50s and 60s don’t realize how much caregiving costs — physically, emotionally and financially.

A survey released today by Next Avenue partner shows that almost half of family caregivers, typically boomers, are shelling out $5,000 a year for medications, medical bills, in-home care, nursing homes and more.

“We were very surprised by how much people were paying out-of-pocket,” said CEO Andy Cohen.

(MORE: Can You Afford to Become a Caregiver?)

The cumulative numbers can put a dent in saving for your own retirement and could mean having to work an extra year or two or three.

“Over five to 10 years of caregiving, the cost is $25,000 to $50,000,” Cohen said. “At the high end, our survey showed 7 percent of people are paying $50,000 a year — the equivalent to paying for college.”

In addition to the financial strain, 85 percent of those surveyed said they felt repercussions because of their caregiving role at work. Many also struggled with health problems related to their caregiving, ranging from increased blood pressure to depression.

Difficult Conversations

Much of the problem stems from conversations we haven’t had, the survey of 1,345 family caregivers showed. (The survey defined "family caregivers" as people who take care of a loved one and are unpaid for their services.)

Seven out of 10 surveyed hadn’t spoken with their loved ones about how to pay for care.

“It’s a topic people avoid. It’s like earthquakes,” said Cohen, who lives in California. “We don’t prepare until we have to — and by then, it’s too late.”

(MORE: Caring for a Relative? You Might Get Tax Breaks)

Similarly, caregivers often don’t speak to their employers about what they’re up against. A big fear is discrimination. “It’s like how women didn’t use to talk about a pregnancy at work. They didn’t want to tell because they didn’t want to be discriminated against,” Cohen said.

He argues that if the 43 million family caregivers in the U.S. let their employers know what they were going through, accommodations might come faster.


(MORE: Caregiving is a Corporate Issue)

“There are 2 million brides in the U.S. each year; four million babies are born. This group is so much larger, and yet they feel powerless,” Cohen noted.

Where to Find Help

Another takeaway from the survey is that caregivers must take care of themselves. They have double the national depression rates, higher blood pressure and higher divorce rates, the survey showed.

“Two-thirds of them are women,” Cohen said. “They feel guilty not doing enough and run themselves into the ground. But it’s important to know you can never do enough.”

So on a practical level, where can caregivers begin to get help? Here are four tips:

1. Use the National Council on Aging’s (NCOA) Benefits Checkup tool. Did your parent serve in the military or have a state job? This online tool might find that he or she could be eligible for benefits you (and your parent) weren't aware of. Benefits Checkup has helped almost 4 million people find $14.5 billion in benefits, the NCOA says.

2. Consider using life insurance to pay for long-term care. Good information on this is available through the website of the Administration on Aging.

3. Find out how some businesses are changing the workplace culture for caregivers and share these ideas with your employer.

4. Know that multigenerational living is making a comeback. As care costs rise, the trend will likely peak with more boomers moving in with their children. “I think about this all the time and am very, very nice to my children,” Cohen said.

Sue Campbell was an Editorial and Content Director for Next Avenue. Follow her on Twitter @SuePCampbell. Read More
By SCAN Foundation
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