The Financial Costs of Family Caregiving: A Stark Reality

200-lynn-friss-feinberg-aarp.imgcache.rev1320086023339-1Lynn Friss Feinberg, MSW
Senior Strategic Policy Advisor
AARP Public Policy Institute

(This post was originally published on the AARP blog and is re-posted with permission.)

Families and close friends are the most important source of support to older people and adults with a chronic, disabling, or serious health condition. They already take personal responsibility for providing increasingly complex care to the tune of $470 billion (as of 2013). That figure, representing family caregivers’ unpaid contribution in dollars, roughly equals the combined sales of the four largest U.S. tech companies (Apple, IBM, Hewlett Packard and Microsoft, $469 billion) in 2013.

The out-of-pocket hit

Caregiving families feel great uncertainty and high anxiety about how they will continue to pay for long-term services and supports (LTSS) for a relative or close friend with increasing self-care needs. And for good reason. Family caregivers not only provide help with daily activities and carry out complex medical and nursing tasks, they also spend a considerable amount of money out of pocket for caregiving.

Out-of-pocket spending for caregiving generally refers to the purchase of goods and services on behalf of the person the family caregiver is helping. This can include housing, medical and medication premiums, copays, meals, transportation, mobility and other assistive devices, supportive services (such as adult day services and paid home care), and other goods and services.

A recent AARP research study finds that more than 3 in 4 family caregivers (78 percent) report incurring out-of-pocket costs as a result of caregiving. In 2016, family caregivers of adults on average spent nearly $7,000 on out-of-pocket costs related to caregiving, amounting to 20 percent of their total income. Among racial or ethnic groups, out-of-pocket spending for caregiving was highest among Hispanic/Latino family caregivers. They spent an average of $9,022, representing 44 percent of their total income in 2016.

Caregiving, therefore, can have a major impact on one’s current and future financial situation. A consensus report from the National Academies of Sciences, Engineering, and Medicine concludes that family caregiving for older adults poses substantial financial risks for some family caregivers. Especially vulnerable to financial harm are families caring for older relatives with significant physical impairments or dementia, low-income family caregivers, and those who live with or live far away from their older relative who needs care. Continue reading

A Flu Shot is The Best Shot at Prevention for People 65 and Older

cdc-dj-vaccination-clinic_title-2Daniel B. Jernigan, MD, MPH
Director of the Influenza Division
National Center for Immunization and Respiratory Diseases
Centers for Disease Control and Prevention

For millions of people, the flu can mean a fever, cough, sore throat, body aches, and fatigue for a week or more. But did you know that if you are 65 years or older, you are at increased risk of serious flu-related complications, like pneumonia?

“People’s immune systems can become weaker with age, which places older adults at high risk of serious flu-related complications,” says Dr. Lisa Grohskopf, a medical officer with CDC’s Influenza Division.

While flu seasons vary in severity, people 65 years and older bear a comparatively greater burden of serious flu-related illness compared to other age groups during most flu seasons. Data from recent seasons shows that between about 70 to 90 percent of seasonal flu-related deaths in the United States have occurred among people 65 years and older. For hospitalizations, this number is between about 50 and 70 percent.

This is why flu vaccination is especially important for people 65 years and older. While flu vaccine can vary in how well it works, there are a lot of scientific data showing that flu vaccination prevents illness and hospitalizations, even among people 65 and older for whom the vaccine may not work as well. A new CDC study published this summer in the journal Clinical Infectious Diseases (CID) found that flu vaccination reduced the risk of flu-related hospitalization among people 65 to 74 years by 61%. Vaccinated people 75 and older were similarly protected (57%).

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Polypharmacy and Deprescribing

WebDoes the number of medications you’re taking sometimes seem too high? Maybe it’s time for you and your healthcare provider to give your medication list a check-up by taking a closer look at the prescription and over-the-counter (OTC) treatments you take.

As you grow older, you’re more likely to develop health conditions that require taking multiple medications—some of which you may take for a long time. Many older people also take OTC medications, vitamins, or supplements as part of their routine care. As a result, older adults have a higher risk of overmedication, also known as “polypharmacy”—the medical term for taking four or more medications at the same time. Polypharmacy can increase your chances of unwanted reactions (also called “adverse drug reactions”) due to medications taken on their own or together.

To address this increasingly common problem, healthcare providers are focusing on how to reduce the number of medicines older adults are using through a practice called “deprescribing.” Dr. Michael Steinman, a member of the American Geriatrics Society (AGS) and a geriatrician at the University of California, San Francisco, recently appeared on WPUR—Boston’s NPR News Station—to discuss deprescribing with Dr. Barb Farrell, a pharmacist from Bruyère Geriatric Day Hospital in Ottawa, and Laura Landro, assistant managing editor at the Wall Street Journal. Hear what they had to say.

Want access to more tips and tools to help you manage multiple chronic conditions or multiple medications? We’ve got you covered.

 

How to Be the Best Caregiver/Care Coach You Can Be (Part Two)

Barb Resnick HeadshotBarbara Resnick, PhD, CRNP
Professor
Sonya Ziporkin Gershowitz Chair in Gerontology
University of Maryland School of Nursing

Remember my recent blog post about being a terrific caregiver and care coach?  Here are some more tips based on my professional and personal experience.

Remember, Actions Speak Louder Than Words

You may not be an individual’s primary caregiver or care coach. You may just want to show you care. We all have people in our lives we really care about who have received some type of life-threatening or life-impacting diagnosis.  It could be anything from experiencing a hip fracture or a stroke, or a cancer diagnosis requiring treatment or palliative care management (comfort care).

It is hard in these situations to know how to respond and what to do.  Personally, I am a big believer in “actions speak louder than words.”  It never hurts to reach out to someone you care about who is undergoing treatment or who needs help and support coping with a long-term illness or disability.

Never be afraid to just DO or SAY something. Don’t be afraid to let the person know you heard about their illness and wish them well.  Show you care in any and every way.  Don’t hesitate because you are afraid you are intruding on the person’s privacy. If you heard about their illness, it is no secret!

Avoid Useless Gestures

Personally, I recommend against saying things like “let me know if I can do anything” or “call me if there is anything I can do.”  Essentially, when someone is ill they are not likely to pick up the phone and call for help.

Instead of empty gestures, provide words of encouragement that may have helped you in the past. For example, when I first started my course of radiation and chemotherapy, a colleague sent me a quote that Christopher Robin said to Winnie the Pooh:  “Promise me you’ll always remember that you are braver than you believe, stronger than you seem, and smarter than you think.”  I put this on my desktop and read it daily to help me through my own challenging treatment.  Continue reading

How to Be the Best Caregiver/Care Coach You Can Be (Part One)

Barb Resnick HeadshotBarbara Resnick, PhD, CRNP
Professor
Sonya Ziporkin Gershowitz Chair in Gerontology
University of Maryland School of Nursing

As someone who is generally the caregiver—professionally and as a woman, mom, wife and daughter—I have had the opportunity to learn recently what is most helpful when being on the receiving end of caregiving. My thoughts combine my professional work as well as the personal experiences I have had with the health care system and with some challenging health care issues.

There is a difference between short-term caregiving events (such as helping someone after a joint replacement, fracture, or cancer treatment), compared to long-term caregiving events (such as caring for someone who has had a major stroke or who has dementia or Parkinson’s disease).  The approaches recommended here can be used for both short- and long-term caregiving.

My most recent thoughts come from going through an extremely aggressive course of radiation and chemotherapy.  In this treatment, the health care team is focused on destroying cancer cells and not necessarily on helping the individual undergoing treatment cope.  Therefore, a caregiver, or what I like to think of as a “care coach” or “care champion,” is essential.  That role generally falls on family, friends, or co-workers.

Based on my experience, here are some ways to be a terrific care coach. Continue reading