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Understanding the Financial Costs of Stroke Caregiving

by Katie T. on Friday, October 25, 2013

Being the family caregiver of a stroke survivor is often rewarding but it also can take an enormous physical and emotional toll on the caregiver. In addition, there can be significant financial costs that can come with being a family caregiver- an issue often overlooked and less understood.

Nearly 50 percent of Medicare beneficiaries discharged from the hospital after a stroke return directly home, often with the help and support of a spouse or other family caregiver.  Without this assistance, ranging from personal care—including bathing, feeding, and toileting—to housekeeping and medication adherence, many stroke patients would not be able to remain at home but would instead be in a nursing home or hospital.

Although data on the economic value of family caregiving for stroke survivors is scarce, one study conducted about a decade ago conservatively estimated that informal caregivers provide an estimated $6.1 billion annually in informal care to stroke survivors. And overall in our country, it is estimated that family and friends who provide unpaid care to loved ones with conditions that cause limitations to daily activities contribute a whopping $450 billion annually in economic value!

Despite this huge contribution to our country, this service often comes at a financial cost to the caregiver. According to a 2005 survey conducted by the American Heart Association/American Stroke Association (AHA/ASA), nearly 43 percent of stroke caregivers said being a caregiver had affected them financially “quite a bit” or “a lot”. If you’re a family caregiver you may very well have experienced this for yourself, but nevertheless, here are some statistics that may surprise you about the financial costs of being a family caregiver:

• They spend $5,531 out-of-pocket in annual direct costs (for such items as assistive devices, modifications to the home, etc.).
• They provide an average of 20.4 hours of unpaid care per week.
• Seven in 10 caregivers cut back on work hours, change jobs, or stop working.
• Loss of wages, Social Security benefits, and pensions for caregivers age 50 or older average $283,716 for men and $324,044 for women.
• One in 3 caregivers use their savings to be a caregiver.
• One in 4 caregivers cut back on spending for their own preventative health or dental care.

At the AHA/ASA, we think it’s high time that we as a nation start focusing on the financial needs of family caregivers and providing them with the support they need to continue their invaluable labor of love. That’s why we’ve joined an informal alliance of organizations working on Capitol Hill to help educate lawmakers about the financial consequences of being a family caregiver. We have been advocating for the establishment of a tax credit for family caregivers that would alleviate some of the financial burdens of providing care. As Baby Boomers age and the need for caregiving increases, providing a tax credit to family caregivers to supplement the care provided through Medicare and Medicaid will become increasingly important for meeting the nation’s long-term care needs – not to mention for our nation’s long-term fiscal health.

Fortunately, some lawmakers are listening. Senators Amy Klobuchar (MN) and Barbara Mikulski (MD) recently introduced legislation in the Senate that would allow taxpayers caring for an aging family member to receive a tax credit of up to $1,200 a year to help assist with the costs of family caregiving. While this bill, the Americans Giving Care to Elders (AGE) Act (S. 1485), won’t address all of the financial needs of caregivers, we believe it is a step in the right direction.

Stay tuned for You’re the Cure action alerts for more information about this effort and opportunities to act.

**Today's blog post was written by Stephanie Mohl, Senior Government Relations Advisor for the American Heart Association/American Stroke Association.

We want to hear from you:  Are you a family caregiver for a loved one who’s had a stroke? How has this affected you and your family financially? Tell us your story in the comments below.

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Comments (12)

  • Thank you AHA/ASA for supporting the stroke community and giving resource for help (mentally, financially and etc).

    — Nathan T.

  • Yes taking care a heart or stroke patient, I know from experience (I am a heart,I had an aortic valve replacement 5/7/2013 - I now have a mechanical valve), l loss a lot time from work (no salary for 6 months).

    — Nathan T.

  • I agree, taken care of stroke is hard on everyone (emotional,financial).

    — Nathan T.

  • I gree, it is on patients and their familes.

    — Nathan T.

  • My husband was 56 when he had a massive brain stem stroke, 4 yrs ago. I was 54. We both were employed full time and making a good comfortable living, enjoying our jobs and our lives. The day he had his stroke was the last day either one of us worked. Thank God we had insurance and some savings. But we had to sell our house and relocate closer to children for help, went through savings pretty quick. Since it took almost 6 months for his disability to start and then he had to wait 24 months for medicare to start we went through money rapidly. Had to pay almost $800 a month just for Cobra insurance until medicare started. I went without insurance for a couple of years and had a very bad freak accident and had surgery and now owe over $100,000 in medical bills. I don't qualify for any type of assistance because i wasn't fired from a job, no unemployment, too young for social security, i'm not disabled. I am home with him 24/7. He's been on Hospice care for almost a year now and has continued to have frequent hospitilizations up till Hospice, near death illnesses and multiple smaller strokes. I'm down to our last $7000 in savings because were about $400 a month short every month trying to live on his disability. We had to purchase his first wheelchair ourselves. I've bought a shower chair, had to have the bathroom remodeled to accomodate him, bought his first hospital bed, several walkers, standing frame, braces, a handicap accessible van, put a ramp into the house. Would love to be able to access my social security early. I understand i could get an amount about half of his disability if i was age 62, but i'm only 58. We're hanging in there and only through the grace of God are we making it.

    — Martha W.

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