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.
Why only allow taxpayers caring for an aging family member to receive a tax credit? I have a family member who 32 who suffered a massive stroke.
Hi Phyllis- We agree. The AHA/ASA would prefer broader legislation that would provide the tax credit for caregivers of younger survivors, and we’re advocating to expand the bill mentioned above to help more families. But given the budget challenges facing Congress, we believe this legislation is a step in the right direction and one we can build upon in the future. We'll be sure to keep everyone posted on progress and would encourage you to reach out to your Members of Congress to share your story and to express support for a family caregiver tax credit.
I am a full-time caregiver for my husband who is only 52 years old. He doesn't yet qualify for medicare. I am carrying COBRA since I was laid off. I believe I was laid off because I was spending too much time away from the office caring for my husband. I believe we deserve a tax credit when we are taking care of a family member. Please support this effort.
My brother is 49 and has had an ischemic stroke and TIA both within 11 months. I moved in with him after the ischemic he had last December. I work a full time job that thankfully my boss is understanding when I need to be off or go in late. However, this does affect my pay and getting some of my responsibility taken care of. If this bill actually took place it would help but not nearly cover time off to make it to each one of the Dr appointments. I am also grateful that all of his drs and most of the staff know me by name so that if I need to call and follow up, I can without problem. He also just lost his job & insurance so I'm bracing myself for future hardship... I was told about possibly being able to get assistance somehow through his disability just not sure how that works. Any advice would be greatly appreciated.
When my husband had his stroke in November 2008, I had to drastically limit my work hours for the 3 months he was in the hospital and in-patient rehab - I had to take over all the household chores and financial responsibilities. Even after he came home, I was only able to work about 1/2 as much as I had before, and that continued for 2-3 years. We emptied my retirement savings account to pay for caregivers so I could work even part-time, and to pay for continuing outpatient therapy for him, and to finally qualify for Medicaid assistance. Medicaid now pays for his caregivers based on the level of his disability, and picks up what his health insurance does not. But he has not shown any interest in participating in "family life" - so I continue to be responsible for all our finances, schedulinghis appointments, keeping track of his medications, etc., scheduling caregivers. Its not just a financial toll - its a physical and emotional one, too.