Nearly 2 Million New York state adults are informal caregivers

Nearly 2 million New York state adults provide informal care to family members, neighbors or friends who need assistance with everyday or health-related activities due to chronic physical or mental impairments. These caregivers, who usually are unpaid, devote an average of 13 hours of care per week at an estimated annual economic value of about $20 billion, according to a report issued today by Excellus BlueCross BlueShield.

The important role of informal caregivers in the lives of those who are ill, disabled or elderly can’t be underestimated. “The approximate statewide value of informal caregiving is on par with the total amount that New York state paid for Medicaid long-term care services in 2008,” said Arthur Vercillo, M.D., regional president, Excellus BlueCross BlueShield.

Several factors will continue to fuel the need for more informal caregiving in the future, noted Vercillo. “They include the aging of the baby boom population, advancing medical technology that will extend life expectancy beyond the 78.1 years that it is today, shortening of hospital stays and decreasing numbers of health care workers,” he said.

The assistance that informal caregivers provide people with long-term illnesses or disabilities can help recipients delay and sometimes entirely avoid being placed in institutional care. Informal caregivers usually assist with personal care and everyday activities but also may help with more complex health-related tasks, such as medication management and wound care.

Vercillo noted, however, that caregiving exacts a toll on informal caregivers. “It’s not always easy — emotionally, financially or physically — to be a caregiver,” he said, “and that’s something to recognize and address.”

Based on Excellus BlueCross BlueShield’s analysis of a statewide survey, 513,000 upstate New York adults (13.4 percent of the adult population) are informal caregivers. Among upstate New York regions, the percentage of adults who are caregivers is highest in the Utica/Rome/North Country region (15 percent) and lowest in the Southern Tier and Western New York (about 12.5 percent each). In Central New York and the Finger Lakes region, informal caregivers make up 13.9 percent and 13.2 percent of the adult population, respectively.

The average upstate New York caregiver is likely to be a woman in her 40s or 50s who is employed (59.9 percent), has at least some college education (67.4 percent) and has average annual household earnings of $50,000 or more (42.9 percent). Informal care is most often provided to someone who is age 65 or older and is likely to be a provider’s parent, in-law, spouse or other relative who lives in his/her own home.

While about 25 percent of informal caregivers can’t pinpoint their care recipient’s specific health problem, 14 percent understand their recipient’s problem to be neurological and between 10 percent and 12 percent identify the primary problem as aging, cancer, circulatory diseases or mental/behavioral disorders. The Alzheimer’s Association estimates that 20 percent of adult caregivers in the U.S. provide care for someone age 50 and older who has dementia.

Upstate New York’s informal caregivers provide an average of about 11 hours of care per week. About 62 percent of them have provided care for three years or less. One-third have been in their roles for four years or more.

Although informal caregivers usually are unpaid, the Excellus BlueCross BlueShield report estimates the annual economic value of informal care to be $4.5 billion in upstate New York. By upstate New York region, the estimated annual economic value of caregiving is highest in Central and Western New York (about $1.3 billion each) and lowest in the Southern Tier ($280 million). In the Utica/Rome/North Country and Finger Lakes regions, it is $774 million and $854 million, respectively.

While often gratifying for the caregiver, caregiving also can bring emotional, financial and health-related challenges. About 58 percent of upstate New York’s informal caregivers report some caregiving-related stress. Compared to other upstate New York adults, a higher percentage of informal caregivers report symptoms of depression (40 percent versus 27 percent) and 27.5 percent indicate that they sometimes, rarely or never receive needed emotional support.

In addition to emotional stress, family and other unpaid caregivers cite not having enough time for themselves and their families and financial stressors. Some express concern about caregiving affecting their own health and subjecting them to injury and health-related activity limitations.

For nearly one-third, caregiving obligations negatively affect their employment by forcing them to take time off or reduce their work schedules. An estimated 11 percent retire or leave work because of caregiving responsibilities.

The Excellus BlueCross BlueShield report highlights tips from experts to ease the challenges faced by informal caregivers:
• Identify and use available community resources.
• Get caregiver training.
• Learn about your care receiver’s condition and maintain medical records so you can best communicate with his/her physician and other providers.
• Recognize caregiving as a job and seek well-deserved respite whenever possible.
• Watch for signs of depression and don’t hesitate to seek professional help.
• Accept help from those who offer it. Involve family and extended family as much as possible.
• Be open to opportunities and suggestions to help your loved one be more independent.
• Trust your instincts. They will usually lead you in the right direction.
• To protect yourself and your care recipient, use proper lifting, pushing and pulling techniques when engaging in care activities.
• As you grieve your losses, allow yourself to dream new dreams.
• Seek the support of other caregivers. There is strength in knowing that you are not alone.

“Given the large proportion of informal caregivers in Central New York, everyone, including employers, should acknowledge those among us who provide care for someone who has a long-term illness or disability,” said Vercillo. “Caregivers especially can use additional emotional support,” continued Vercillo, “and assistance with the financial and physical burdens of caring for another individual can be helpful.”

To view the complete fact sheet on informal caregiving in upstate New York, go to Additional information on caregiving is available from Excellus BlueCross BlueShield,, Second Opinion Caregivers Materials and the Oswego County Office For The Aging Caregiver Information.