Caregivers of older adults can use some help, too

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Various government programs offer home help to frail older adults, but their own loved ones are by far the No. 1 source of assistance for those seniors.

These husbands and wives, sons and daughters, grandchildren, nephews and nieces, and even friends and neighbors of people in need, form a giant unofficial workforce that some estimates suggest is providing the equivalent of more than $300 billion in free home care.

There is a cost, however, for the estimated 44 million individuals providing some level of care to other adults. Researchers say they too often neglect their own health while focusing on someone else's needs, thus jeopardizing their ability to help in the long term.

Such situations will only increase in coming years, analysts suggest, as medical technology helps expand the number of people living longer with chronic conditions in the oldest age brackets.

At the same time, the supply of people able to provide that free care for them is shrinking, from both demographic and lifestyle changes.

Dr. Larry Wright, an Arkansas geriatrician who is co-director of The Caregiving Project for Older Americans, said "the presence and availability of an adult female relative close by" has traditionally been the key factor helping people postpone or avoid nursing home care.

Most nursing home patients don't need round-the-clock medical care, he said, just someone to help them with basic tasks.

"The way the American family has changed, with two-income families, and more families having fewer children, and the way we're scattered all over the country, there will not be nearly as many family members available to do this," Dr. Wright said.

An estimated 80 percent of long-term care in the country is provided through family members or other personal connections, as opposed to paid workers.

A number of advocacy groups are trying to convince policymakers to take note of the help such individuals need.

Congress passed legislation last year, for instance, authorizing $289 million in federal grants over five years to support state and local respite care programs to help overwhelmed family caregivers.

The actual funding, however, has yet to be approved and allocated.

Most long-term care strategies are developed at the state levels, and Pennsylvania's Department of Aging oversees an array of programs designed to offer home help (see related story).

For the most part, caregivers seek to stitch together a workable system without government support.

That works especially well in providing help that requires no special skills, such as shopping, household chores, transportation to medical appointments and some assistance with meals.

The minority of caregivers, according to surveys, feel well-prepared for more strenuous tasks such as helping with bathing, dressing and toileting.

Many go as far as they can to provide such help, but it's also essential they know how to ask for assistance, or when to stop and consider assisted living or nursing home care, noted Dr. Richard Schulz, a psychiatry professor who is associate director of the University of Pittsburgh's Institute on Aging.

"For many, the tipping point is the point at which the health and safety of either the parent or caregiver is compromised, where if they stay in this situation something catastrophic can happen, and it can be very bad for either the health of the patient or caregiver," Dr. Schulz said.

He noted that government officials enjoy having the free family care system, as it reduces the burden on the federal-state Medicaid program, which funds most of the country's nursing home care.

Darlene Burlazzi, deputy administrator of the Allegheny County Area Agency on Aging, said the department's expansion of efforts to keep people at home is tempered by realization that it's not always realistic.

"Even though the state is trying to rebalance long-term care, everyone knows there will always be a need for nursing homes or assisted living," Ms. Burlazzi said. "Some consumers have no family or informal supports, and care at home around the clock is prohibitively expensive."

Deborah Halpern, communications director for the National Family Caregivers Association, said some people mistakenly view their efforts to help older relatives as obligatory duty from devotion, instead of as a job.

Unless they view it as serious work, they may shortchange themselves and the care recipients by failing to seek necessary advice and support.

"Once you see this as a 24/7 job," she suggested, "you know that you're required to ask for help when you don't know what to do, just like any job. You seek out help, and seek out research, and seek out a mentor."

One benefit of caregiving in the modern era is the amount of guidance available to caregivers over the Internet.

While some caregivers are themselves aged and unsophisticated, a survey for the National Alliance for Caregiving described the "typical" such person as a 46-year-old female, with some college education, who also holds a regular job and spends more than 20 hours a week assisting her mother.

The imposing forecast is that the number of adults 85 or older will multiply more than four-fold by 2050, while the potential number of caregivers per family will keep shrinking.

No one knows how that daunting gap in supply and demand will work itself out. Dr. Wright figures that as more and more baby boomers become caregivers for parents -- trying to avoid institutionalization of them but lacking sufficient support -- they're going to press for more changes in the future.

"Our historic default, if you're dependent enough and can't take care of yourself at home, is to go off to a nursing home," he said.

"The baby boomer generation is going to find that unacceptable, and this is a generation with the political clout to do something about it."


Gary Rotstein can be reached at grotstein@post-gazette.com or 412-263-1255.


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