Article: Cost of Elderly Care Is Double Prior Estimates

The out-of-pocket cost of caring for an aging parent or spouse averages $5,531 a year, according to the nation’s first in-depth study of such expenses, a sum that is more than double previous estimates and more than the average American household spends each year on health care and entertainment combined.

Family members responsible for ailing loved ones provide not only “hands on” care, but reach often into their own pockets to pay for many other expenses of care recipients, including groceries and household goods, drugs and medical co-payments and transportation, which nudges the average cost of long-distance caregiving to $8,728 a year.

These caregivers, spending on average 10 percent of their household income, manage the financial burden by taking out loans,skipping vacations, dipping into savings or ignoring their own health care.

These findings, and others, come from a telephone survey of 1,000 adults currently caring for someone over the age of 50 who needs help with activities like bathing, preparing meals, shopping or managing finances. It is the first systematic look at out-of-pocket spending among the estimated 34 million Americans providing care for an older (50-plus) family members or friends, and it builds on a landmark 2004 study.

The survey, which will be formally released November 19th, is expected to be the centerpiece of a Capitol Hill briefing a week later, was conducted by the, a research and policy organization, and Evercare, a division of the United Health Group, which coordinates long-term care for 150,000 clients. The report urges government relief for family caregivers, whether tax deductions, tax credits or other stipends, all of which have stalled in Congress in the past.

“Typically, when people talk about services for caregivers, they mean respite care, support groups and things like that,” said Gail Gibson Hunt, president of the National Alliance for Caregiving . “They don’t think of the financial side being tied into the burden. If you’re spending 10 percent of your income, that’s part of what’s weighing on you and policymakers haven’t paid enough attention to that.”

Until now, all estimates of out-of-pocket spending was based on a single question buried in a broad 2004 survey of family caregivers, according to Ms. Hunt and Donna Wagner, a gerontologist at Towson University in Maryland who analyzed the data for the new report. The 2004 survey, also the work of the national alliance, had asked 1,247 caregivers to estimate their out-of-pocket expenses. Half said they indeed had such expenses, which averaged $2,400 a year.

By comparison, the current survey, with 29 questions devoted to this one subject, got markedly different results. Of the 1,000 respondents, just two said they had never laid out any money. The other 998, with a median income of $43,026, said they spent, on average, more than $5,500 a year, or 10 percent of their salary. The burden was heavier for those who earned less, 20 percent for respondents with incomes of $25,000.

Melissa Phillips, 45, a stay-at-home mom in Clayton, Indiana, has spent $500 a month, or $6,000 a year, since her father moved from his own home into an assisted living center, largely on groceries, incidentals and medical equipment like a wheelchair and riser for the toilet seat. She helps out a bit with the monthly rent so his savings will last longer and will pick up the slack if he runs out of money.

For Mrs. Phillips, one of the survey respondents, current circumstances are an improvement over the prior 10 months her father spent in his own house, when he was in and out of the hospital with a string of medical emergencies. Mrs. Phillips and her three children moved in with him, disrupting their home schooling, while her husband remained at home.

Costs ran higher then, Mrs. Phillips said, because she paid her father’s larger-than-usual utility bills, as well as gasoline and restaurant meals for her own family when she was running back and forth to the hospital.

The good news, after a fashion, is that she did not have a paid job so there was no loss on income, unlike the 37 percent of survey respondents (compared with 16 percent in the 2004 research) who had to quit a job or reduce their hours due to caregiving responsibilities.

Among the survey findings are these:

The most common expenses for caregivers are household goods and food (42 percent of respondents spent an average of $183 a month), transportation (39 percent spent $128 a month), medical co-payments and pharmaceuticals (31 percent spent $337), clothing (21 percent spent $107) and home repair and maintenance (13 percent spent $316).

The most common strategies for covering these costs are cutting back on discretionary spending. Respondents reduced spending on leisure activities (49 percent of caregivers) and vacations (47 percent)and postponed major purchases or home improvement (34 percent). Other strategies involve caregivers compromising their own retirements. Some dip into existing savings (34 percent withdrew an average of $9,318 a year). Others limit saving for the future (27 percent cut annual saving by $8,796). And many forego personal health care (23 percent reduced such spending by $9,394).

The highest out-of-pocket costs were incurred by long-distance caregivers, followed by caregivers who live in the same house as their ailing relative. Caregivers who live nearby spend the least.

In addition to the telephone portion of the survey, the report also includes detailed information and narrative accounts from 41 men and women who were paid $100 to keep expense diaries over the course of a month. This subgroup — not a representative sample because they were self-selected and also paid — reported sharply higher expenses than the telephone respondents.

The diarists spent an average of $1,029 a month, or $12,348 a year, more than double the annual expenses of the larger, randomly selected telephone sample. In addition, the diarists who lived with their elderly relatives, spent the most — $14,832 a year, followed by long distance caregivers ($14,064) and those who lived nearby ($8,496).

These discrepancies are not explained in the study, entitled “Family Caregivers: What They Spend, What They Sacrifice.” But both Ms. Hunt and Ms. Wagner speculated that the diarists’ caregiving situations were atypically complex or that day-to-day record keeping produced more accurate information than recollection.

Each was assigned a researcher, who checked in regularly by phone or e-mail. All the researchers found themselves consoling caregivers who welcomed their calls, Ms. Wager said: “Having us care about their life was big plus.”

That was the case for Bill Camarata, 48, who has been living with his 77-year-old mother outside Cleveland since 2002 because of her dementia Mr. Camarata’s out-of-pocket expenses are a low $2,400 a year because his mother has enough money to pay for most of her needs.

But he is drained by the responsibility, he said in a telephone interview, especially along with a full-time job at a telephone company call center, and dispirited by marriage plans that have been indefinitely postponed.

So why did he agree to the extra chore of keeping the diary, Mr. Camarata was asked, and what did he get out of the experience, beside $100?

“It’s the emotional part that’s so hard, so it was nice to get positive feedback,” he said. “You never get enough reassurance that what you’re doing is right.”

Cost of Elderly Care is Double Prior Estimate