In 2014 a RAND Corporation study found that the cost of informal caregiving (informal meaning there was no payment for such supportive care) was 650 billion dollars if the caregivers were paid the same rate as for skilled nursing care. As the researchers noted “Our findings provide a new and better estimate…These numbers are huge and help put the enormity of this largely silent and unseen workforce into perspective.” This informal caregiving effort is a critical part of the care provided to older adults. It is estimated that over 30 billion hours are spent annually by caregivers.
WHAT YOU SHOULD KNOW
Research shows that social networks are the source of critical care for both the physical and mental well-being of older adults as they age. Informal caregivers are derived from a person’s family and friend networks. Those older adults who receive help from caregivers exhibit better health outcomes and a higher quality of life. Part of those outcomes is a result of the fact that caregiving can delay or prevent the placement of a person in a costly long term care facility. The person receiving informal caregiving can continue to live in their home and environment wherein they are close to family and friends in an environment they know. Multiple studies show that older adults living with HIV do have social networks that are populated mostly by friends. Many older adults with HIV have long ago been disenfranchised by their families and most have not partnered or have children. In one study only 15% of older adults with HIV were married or partnered. Most thought that they could rely upon friends to provide informal care when it would be needed. In fact, the size of their social network was large, populated mostly by friends. But studies show that it is not the number of people in the social network but rather the number of those network members that are classified as functional. Therefore, it is important to recognize that the presence of a social network does not guarantee that caregiving and support will be available in times of need. Whether a person is seen as functional depends on the frequency of regular contact they have with the person who will be in need of care. In two large-scale studies of older adults in New York City researchers found that those in a person’s social network who would be functional had connected by visiting or calling at least once each week.
Studies of older adults with HIV repeatedly conclude that the overall functionality of their social network is low. Consequently, the social networks of these older adults have been characterized as being fragile. Part of the reason for this fragility was the observation that the friends who mostly comprised their social networks were also peers living with HIV. Researchers concluded that those friends would not likely be able to provide the support needed as they too would be needing supportive care. In a study of caregiving researchers found that older HIV-positive adults did not receive adequate support from their social networks. They reported feelings of isolation, stigmatization, and the inability to cope with the demands of managing their illness, such as keeping medical appointments or adhering to complex treatment regimens, when they are confronting the challenges of multimorbidity.
In a comprehensive study of almost 1000 older adults with HIV only 30% indicated having someone who can provide assistance some or all of the time, and the rest reported that they have someone to help them only occasionally (20%) or not at all (24%). This picture changes when these older adults with HIV were asked if they had someone to talk with or help with emotional situations or decision-making – 74% had someone to turn to for emotional support at least some of the time and 11% said they had no person they could turn to for any emotional support.
Building social networks is a lifelong process. And, as people age those social networks are also reduced in size and function as people die or move away or find themselves in long term care facilities. None-the-less, building or sustaining a social network remains a worthy if not mandatory goal. Often social networks arise somewhat spontaneously from engaging social groups. The best example of this would be religious congregations that by their very nature provide supportive care and emotional support.
There are studies showing that web-based peer support interventions may lend themselves better to the provision of informational and emotional support. Yet it is likely that such web-based caregiving support needs to be supplemented by the power of face to face, touch for touch, support in-person.
Lacking access to informal caregivers, one can seek formal (paid) caregivers. This is a challenging process – to find the best fit for the person in need. There are many on-line resources that guide you through this process. Among them is the AARP as well as the government ACL (Agency for Community Living).