Family caregivers deserve support

CARING FOR AN OLDER ADULT in your life is a complicated matter—at once daunting and rewarding.

In the old days (and still today in certain cultures), it was less complicated. Seniors often lived with their adult children in households that were more like villages. Or an unmarried adult child stayed back and lived with aging parents.

But changes in the nature of society and families, along with medical advances that are keeping us alive longer, have created a need to build effective infrastructure to support our aging population along with their unpaid family caregivers. In Massachusetts, that is already happening.

And with the state’s senior population expected to double to 2 million over the next 20 years, we need to ensure that our system of long-term senior care can meet the needs both of aging adults and their families.

Massachusetts has 844,000 family caregivers providing 786 million hours of care each year—valued at $11.6 billion. While the majority are still women, 40 percent of caregivers are men and 60 percent of all caregivers work outside the home. Caregivers do everything from household chores to nursing tasks to managing finances to making middle-of-the-night trips to the emergency room. This year’s National Family Caregivers Month, in November, is aptly themed “Caregiving Around the Clock.”

The toll on caregivers is heavy, both financially and emotionally. Women leaving the workforce early for caregiving responsibilities lose approximately $324,000 in wages and social security benefits. In addition, caregivers incur out-of-pocket expenses averaging $7,000 a year. For African-American and Hispanic caregivers, the cost is even higher as a percentage of income. Moreover, 38 percent of caregivers report being “highly stressed” and 49 percent say they had no choice in becoming a caregiver.

Fortunately for seniors and their families, government and private health care organizations are exploring innovative care models that can offer relief and support to many family caregivers. As in the past in health care, Massachusetts is in the vanguard. Yet, many remain unaware of the options available.

One such model is the Program of All-Inclusive Care for the Elderly, or PACE, which is provided by organizations across the country, including in Massachusetts. To be eligible, seniors must be at least 55 years old, certified as nursing home eligible, and able to live safely in the community. Premiums are based on income and both MassHealth and Medicare can be used to help pay. Typically, people who enroll pay nothing.

Another successful model is the Medicare Advantage Special Needs Plan and Senior Care Options Program.  Administered by private health insurers, these plans are available to people age 65 and older who are eligible for Medicaid and may also have Medicare coverage. Members have no premiums or out-of-pocket expenses.

The goal of these models is to let seniors “age in place,” or keep living in their own homes and communities. The approach is to provide comprehensive, integrated, and tailor-made care—including both medical care and support services—designed to keep seniors safe, healthy, and independent.

The models offer solutions to two of the most common caregiver requests—help in keeping the care recipient safe at home and respite relief from the daily responsibilities of care.

Massachusetts has also been a leader on the political front, passing a new law last year—known as the CARE Act—requiring hospitals to note the family caregiver on medical records, provide training, and keep the caregiver informed.

It was an important step, but as a society we still need to recognize family caregivers as members of the health care and long-term care team and re-orient our entire approach to health care to support an age-friendly society.

At the federal level, as Congress takes up tax reform this session, it should consider legislation, called the “Credit for Caring Act,” that would create a tax credit of up to $3,000 to help defray the cost of caregiving. We are encouraged that the Senate passed legislation in late September called “Recognize, Assist, Include, Support and Engage,” or RAISE Family Caregivers Act, to create a national strategy on caregiving similar to the National Alzheimer’s Project Act. We are hopeful that the House will follow suit. With more than 43 million family caregivers in the United States today, the issue is that big and that important.

The older people in our lives raised us, taught us, and sacrificed for us. How we treat them—and the people who lovingly care for them—is both a measure of our values and a foreshadowing of our own futures.

C. Grace Whiting is the interim CEO and chief operating officer of the National Alliance for Caregiving. Richard P. Burke is the president and CEO of Fallon Health.