This report examines the role and experiences of informal caregivers for the older population, using a new resource, the National Survey of Caregiving (NSOC). The NSOC is unique in interviewing all informal caregivers for a nationally representative sample of persons age 65 or older receiving assistance with daily activities. NSOC respondents report on types of assistance they provide beyond traditional household (instrumental activities of daily living) and self-care or mobility (activities of daily living) tasks. These tasks range from assisting with transportation to help with health or medical care, including such things as injections or ostomy care. Thus, estimates capture the full range of supports informal caregivers provide and contributions they make in areas other than explicit long-term care. Information collected about positive and negative aspects of caregiving, health, and indicators of subjective well-being allows examination of how gains and burdens differ by caregiver and care-recipient characteristics and by the intensity of care provided.
In 2011, 18 million informal caregivers provided 1.3 billion hours of care monthly to the more than 9 million older adults receiving informal assistance. Consistent with prior studies, family members are the main source of informal care: Spouses are about 20% of caregivers and provide nearly one-third of the aggregate hours, and adult children provide nearly half of aggregate hours. Hours are concentrated among caregivers of high need recipients--the 31% assisting recipients receiving help with at least three self-care or mobility tasks and the 33% assisting persons with probable dementia, account for nearly half and 40% of aggregate hours, respectively. Informal caregivers provide an average 75 hours per month. Average monthly hours provided are significantly more for spouses (110) and other caregivers living with the care-recipient (114) and those assisting higher need recipients with self-care or mobility (84).
Most caregivers (68%) report substantial positive consequences of caregiving and few (10%) report substantial negative consequences. High levels of both positive and negative aspects of caregiving are associated with greater engagement in caregiving. The most common negative aspects are exhaustion, having too much to do, and too little time for themselves. Not surprisingly, substantial negative consequences are most common among caregivers who provide high levels of care, those who assist individuals with probable dementia, and those who have health problems themselves.
Our findings substantiate that beyond supportive care, informal caregivers commonly provide assistance with a range of medically-oriented tasks as well as interacting with providers and helping older recipients navigate the health system. Finding ways to support informal caregivers in their traditional roles as well as their expanded role in providing and managing health care for the older population continues to be an important policy goal, particularly as the locus of care continues to shift from nursing homes to community settings. Both the Administration for Community Living (ACL) and the National Plan to Address Alzheimer’s Disease recognize the need to support informal caregivers as an essential part of the workforce for maintaining the well-being and health of the older population. The NSOC can contribute to the knowledge base for these efforts.