Understanding the Financial Costs of Stroke Caregiving

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Understanding the Financial Costs of Stroke Caregiving

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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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  • 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.  


    Diane P

  • 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.

  • I am so thankful that some people are putting forth effort to get help with the financial care of a loved one who has had a stroke! I am 20 years old, and I am a full-time nursing student and part time caregiver of my mom who has had 4 cerebral hemorrhages due to a cavernous malformation of some vessels near the brain stem. I have been by her side on this stoke journey since her first when I was in the sixth grade. It was so unexpected since she was healthy on all levels. Last week she just had her forth stroke, leaving her needing complete assistance to sit and stand and nutritional food through a feeding tube. Her speech is now nearly impossible to understand and because she can't blink, she has severe dry eye which could majorly damage her eye sight. There is no treatment/prevention for this malformation because there has not been enough research conducted toward this. I plan to do research on this type of stroke after I graduate with my bachelors in nursing next year, so that there is hope for these stroke survivors and their families. I am in need of more help because I need more time to study during nursing school. I have one year left of school, so I am hoping that I can find a way to make it financially until I graduate, because having a caregiver over constantly is extremely expensive. Even once I graduate, I wonder what I will do. My younger sister is starting college in the fall, and so there will less help for my mom. This is definitely a struggle.

  • My husband and I are the caregivers for his parents.  His father is recovering from a stroke and has onset dementia, his mother has severe dementia.  They can no longer live alone and need help with even the simple things.  I had to stop working, we have gone through our savings and have had to cash in my 401K from my last position.  We have cut back on everything to try and save money.  It is very difficult, I am in the process of looking for a part time evening/weekend position so I can earn some money and my husband will be here to look after his parents. I hope this passes so at least we can get a break on our taxes. Nita P.

  • 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.

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

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

  • 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).

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