The Financial Costs of Family Caregiving: A Stark Reality

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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 →

On Becoming an Older Driver

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altshul headshotSara Altshul
AGS Staff Writer

I didn’t run right out and get my driver’s license on my 16th birthday, like so many of my high school pals did. In my rural hometown, a car was more necessity than luxury. Town was three miles away, school even further.

But my overprotective mom was reluctant to let me learn how to drive on her new manual-shift Saab. Instead, she chauffeured me wherever I wanted to go, and if I wanted to get somewhere when she wasn’t around, I walked or got a ride.

I finally got my license at 18, a few months before landing the coolest summer job of all time – as a Good Humor truck driver. Soon, I bought myself a $500 Simca, a tiny four-door French beauty whose battery was tied on with a shoelace. I had it for years before it literally fell apart.

Since then, I’ve driven hundreds of thousands of miles. Two cars I owned during my 40’s topped out at nearly 200,000 miles each. For the three years I lived there, I even zipped through the Italian countryside, up hills and through narrow, cobblestoned streets, in my second-hand, four-on-the-floor Mitsubishi. Coming to a stop on Tuscan hills in first gear took plenty of practice. Just ask my husband.

Thankfully, I’ve never had a crash and despite a speeding ticket or two over the years, my driving record is pristine.

I’m 66 now. My faculties are sharp and intact. But when I’m driving, I recognize that I have to be more conscious, more focused, and more alert than my younger self ever was. I exert a deliberate effort when I’m behind the wheel: I don’t pass as frequently, I don’t go as fast, and I don’t take chances like I may have done in the past. I am acutely aware of keeping myself, and my passengers, safe on the road. Continue reading →

Older Adults Are Being Overlooked When it Comes to Mental Heath Care

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dr-sewellDaniel D. Sewell, MD
Director, Senior Behavioral Health, UC San Diego Medical Center
President, American Association for Geriatric Psychiatry

(This blog post originally appeared on CareForYourMind.org, a resource created by the Depression and Bipolar Support Alliance (DBSA) and Families for Depression Awareness (FFDA) to help society engage in critical discussions and decisions about mental health.)

For most individuals in the U.S., accessing mental health care is a struggle, but older adults may have it worst of all. Due to stigma, misinformation, and false beliefs about aging, they frequently go without adequate care for depression and other psychiatric illnesses and psychological problems. Too often, doctors offer prescription drugs as a cure-all solution, and fail to address the overall mental health and well-being of the older patient.

The truth is, addressing mental health issues in older populations requires paying more attention, not less. In aging adults, depressive symptoms can point to a physical illness, while physical pain or other physical complaints can often be a sign of mental health issues.

The good news is, when accurately diagnosed, mental health issues are just as treatable in older populations as in younger, but it takes commitment and understanding. In order to help aging Americans get healthier and happier, the system needs to properly address the physical and mental needs of these patients.

What gets in the way of patient-centered care?
Research shows that older adults are often less comfortable seeking care from a mental health professional than their younger counterparts. Due to historical shame and ignorance surrounding mental illnesses and psychological problems, stigma tends to be more powerful among those who came of age before the 1960s.

Depression is also experienced, witnessed, and treated differently in older adults. In this population, depression symptoms can present as physical complaints, irritability, and/or cognitive impairment rather than overt signs of sadness such as crying. Alternatively, psychiatric symptoms can often point to a physical ailment that’s been overlooked. Depression can also be an early sign of dementia.

Additionally, medical illnesses are too often misdiagnosed or wrongfully labeled as purely psychiatric illnesses. To test this theory, we did a six-month chart review in our geriatric psychiatric inpatient unit and discovered that 34% of patients referred to our unit had a previously unrecognized or documented but inadequately treated medical illness—and that illness was likely the source of the psychiatric symptoms. Based on that data, one out of three older patients may actually need medical care versus behavioral health care.

Insurance issues
Insurance companies also get in the way of good care. To cite one shocking example, a nurse employed by a continuing care community in my area was checking in on a patient. When she arrived, she saw the resident on the balcony, with one leg over the railing, clearly about to jump. Luckily, the nurse was able to pull the patient back. I was immediately contacted. When I tried to get pre-authorization for inpatient care from the patient’s insurance company, they told me she didn’t meet the criteria for care because she hadn’t actually jumped. Continue reading →

Mama R: Living it up at 97

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altshul headshotSara Altshul
AGS Staff Writer

Until a few months ago, my mother-in-law lived alone in the Brooklyn apartment building she’d owned for 40 years—“alone” only in a manner of speaking.

Over the years, her sons or daughters occupied two or three of the other apartments in the building; now, one son lives above her and another lives next door. Both look in on her several times a day.

At 97, Mama’s sense of humor is still sharp. Up until recently, she knew to the penny how much money was in her bank accounts. So when she forgets that she’s asked one of us the same question three times in 30 minutes, we all understand. She uses a walker to get around and still never misses a shower, wedding, or other family event.  A few months ago, 40 of us celebrated her birthday at a Chinese restaurant, at her request.

As her frailty became more obvious over the last year, we hired an attendant to look after her during the day. At night, one of her sons would usually have dinner with her (often, Mama cooked the meal herself), or her daughter would come by with groceries and prepared several meals for the week. We created a rotating schedule so that one of us stayed with her over the weekends.

But still, we worried. She’d nap much of the day, she kept the lights off (her thriftiness is a family legend) and she seemed to lose the zest for life that was her hallmark. Another hallmark? Her stubbornness. She adamantly refused to move in with any of us, despite the fact that several of us have homes perfectly set up to accommodate her. Continue reading →