Study Investigates a Caregiver's Role in Older Patients Approaching End of Life

Caregivers fill an important role for older individuals who are suffering from disabilities or severe diseases and especially for those at the end of life. Caregivers are responsible for many challenging tasks during the end of life for a patient; however, often go unpaid.

A study published in Health Affairs, used data from the 2011 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) to form a random sample of people at least 65 years old. A total of 8245 people participated in in-person interviews and were asked about their self-care, household, mobility, and medical activities. Those who received assistance for their health were asked about their relationship to the people who assisted them.

A total of 264 of 2423 community-dwelling older adults who received help for health or functioning died within 1 year of the study enrollment and represented an estimated 905,000 people in the United States during 2011. Although an estimated 2.3 million caregivers nationwide had assisted older adults, the majority were unpaid—with only 260,000 paid caregivers assisting with end-of-life care.

“This work expands knowledge about the scope of end-of-life caregiving and its related challenges by examining all caregivers—both paid and unpaid—who are involved in the care of older adults,” the researchers wrote. “While our work confirms the vital role of family and other unpaid caregivers before and during the end-of-life period, we found that paid caregiving support was significantly higher in that final period.”

Of the paid caregivers, 33% were helping a patient with heart disease, 22% with cancer, and 25% for dementia. In addition, 47% of the unpaid caregivers lived in the same household as the older adult, with 14% being spouses. End-of-life caregivers also spent significantly more time helping with mobility, personal care, making the home safer, and obtaining mobility devices.

End-of-life caregivers also reported physical difficulty related to their caregiving (35% versus 21%) and no time for themselves (51% versus 40%) when compared with other caregivers; however there were no significant differences in depression, anxiety, or financial difficulty based on survival rates among the groups of caregivers.

“Results from this study confirm the significant and enduring involvement of caregivers in meeting the needs of older adults at the end of life,” the authors concluded. “Supporting the growing population of family and other unpaid caregivers in an urgent public health issue. Our findings indicate that the need for adequate support is especially pressing when older patients and the loved ones who assist them are at their most vulnerable, at the end of life.”