North Carolina’s Critical Need

By Mary Bethel, Associate State Director for Advocacy, AARP North Carolina

Caregiving — it impacts almost all of us or will impact us in the future. According to the Rosalyn Carter Institute for Caregiving, there are only four kinds of people in the world:

• those who have been caregivers
• those who are currently caregivers
• those who will be caregivers
• those who will need caregivers

Studies vary in estimating the number of family caregivers in North Carolina caring for older and disabled family members. Regardless of the data source, it is apparent that a large percentage of our state’s citizens are unpaid family caregivers.

According to AARP, over 1.7 million adult North Carolinians are caring for a family member.

A survey by the 2011 N.C. State Center for Health Statistics’ Behavior Risk Factor Surveillance found that one in five individuals surveyed reported that they provided care and/or assistance to a friend or family member within the past month. Of those surveyed, 79 percent reported that the care recipient was aged 50 and older.

The care provided by family caregivers can encompass a broad range of tasks. It can range from providing transportation to the grocery store, to assisting with basic daily activities, to providing round-the-clock health care.

In most cases, care provided by family members is not compensated. Estimates of the value of uncompensated care are staggering. For example, the publication Alzheimer’s Facts and Figures – 2012 projects that 431,075 North Carolina caregivers provide 490,908,515 hours of unpaid care to family members with dementia at a value of $5.95 billion.

Family caregivers are literally the backbone of the State’s long-term care system – providing at least 80 percent of all long-term care services. According to the U.S. Department of Health and Human Services, older adults receive more and more family care as disability increases. At least 86 percent of older adults at greatest risk of nursing home placement live with others and receive an average of 60 hours of unpaid care per week, supplemented by a little over 14 hours of assistance from paid helpers.

The “caregiving career” of a family member is often of long duration: Caring for a family member with Alzheimer’s lasts an average of eight years but may be as long as 20 years. In North Carolina, over 170,000 older adults currently have Alzheimer’s or other types of dementia. This number is estimated to nearly double to 300,000 by 2030.

Although family caregiving can have many rewards, it can take a toll on the care providers. Studies show that caregivers report chronic health problems at nearly twice the rate of non-caregiver, and over half of caregivers report they don’t have enough time for their family.

Nationally and in North Carolina, over half of caregivers work while providing care, which can present significant challenges to the worker. Many caregivers reduce or end employment to fulfill the demands of caregiving.

The 2009 Caregiving in the U.S. study by the National Alliance for Caregiving, in collaboration with AARP, reported that the annual out-of-pocket caregiving cost for caregivers who are employed is $5,200 a year.

With increased demands on public resources that help family caregivers, families are being asked to play a larger role in helping their older and disabled family members. If families are to continue this critical function, they need to be supported in their efforts.

AARP North Carolina and other aging advocacy groups continue to push for policies that promote family-centered care.