A 2014 RAND Corporation study found that the annual cost of informal caregiving (meaning no payment for the care) would be $650 billion if caregivers were paid the same rate as for skilled nursing care. This figure translates into an estimated 30 billion hours spent on informal caregiving. The researchers noted “These numbers are huge and help put the enormity of this largely silent and unseen workforce into perspective.”
What You Should Know
Research shows that social networks provide critical care for both the physical and mental well-being of older adults as they age. Informal caregivers often emerge from a person’s network of family and friends.
Older adults who receive help from caregivers have better health outcomes and a higher quality of life. This is partially due to the fact that caregiving can delay or even prevent older adults from having to move into a costly long-term care facility. People receiving informal caregiving can continue to live in their homes and stay close to family and friends in a familiar environment.
Studies show that older adults with HIV have social networks that mostly include friends. Some older adults may be estranged from their families and may not have partners or children. In one study, only 15% of older adults with HIV were married or partnered. Friends may be able to provide informal care when it would be needed. Be aware that it is not the number of people in the social network but rather the number who are classified as functional.
Having a social network does not guarantee that caregiving and support will be available in times of need. The functional potential for a social contact to provide informal caregiving depends on how often they have contact with the person. In two large-scale studies of older adults in New York City, researchers determined functional people were those in a person’s social network who visited or called an older adult at least once a week.
Studies of older adults with HIV have found the functionality of people within their social networks to be low and fragile. Part of the reason for this was that the friends in their social networks were also peers with HIV. Researchers concluded that those friends would not likely be able to provide the support needed as they, too, needed care.
In a study of caregiving, researchers found that older adults with HIV did not receive adequate support from their social networks. They reported feelings of isolation, stigmatization, and an inability to cope with the demands of managing their illness or multimobidity, such as keeping medical appointments or adhering to complex treatment regimens.
In a study of almost 1,000 older adults with HIV, only 30% indicated that they had someone who could provide assistance some or all of the time; 20% had someone to help them only occasionally; and 24% had no one at all who could provide support. However, when asked if they had someone to talk with or to help with emotional situations or decision-making, 74% had someone to turn to for emotional support at least some of the time. 11%, however, said they had no one who could turn to for emotional support.
What you need to do
Building social networks is a lifelong process. But as people age, their social networks reduce in size and function, as people die, move away, or find themselves in long-term care facilities. Still, building or sustaining a social network is important.
Often social networks can arise spontaneously through participation in different groups. For example, people who participate in religious congregations often find supportive care and emotional support because of these groups very nature.
Studies have found that internet-based peer support interventions may provide needed resources and emotional support. But this virtual support needs to be supplemented by in-person, face-to-face interactions.
If you lack access to informal caregivers, you can seek formal (paid) caregivers. While identifying paid caregivers can be challenging, there are many on-line resources that can guide you through this process including AARP.org and the government-run ACL (Agency for Community Living).