“Caregiver” is a broad term, encompassing anyone who “provide[s] assistance with another person’s social or health needs”.1 In practice, this may look like helping with personal hygiene tasks, shopping and running errands, or managing medical appointments and transportation.1 Caregivers are typically divided into two categories: formal and informal. Formal caregivers are those who have official preparation and receive financial compensation for their time and efforts, such as home health aides and certified nursing assistants. Informal caregivers are unpaid and untrained, and their work can include caring for an aging parent or other elderly person, helping out a friend with disabilities or chronic health issues, and many other types of support.
Informal caregivers provide an estimated 37 billion hours of unpaid labor every year, making up 75% of the caregiving provided in the United States.2 Many people don’t even realize that the support they’re providing is classified as caregiving. Approximately 25% of American adults reported providing some type of care or assistance in the past 30 days, with this care work estimated to have an economic value of $450 billion annually.3 From 2015 to 2020, the number of adult caregivers in the US grew from an estimated 43.5 million to 53.0 million, and this number is only expected to rise further as the population continues to age.4
This informal care work can be deeply rewarding and fulfilling for the caregiver, but it can also come with many emotional, physical, and financial challenges. Many caregivers report stress, exhaustion, depression, anxiety, and guilt related to their care work.2,3 Caregiving can lead to social challenges and significant relationship strain in many domains of life. Caregivers have also been shown to have poorer general physical health, an increased risk of chronic disease, and less frequent preventative screenings due to their focus on providing for others.1,2 Economically, many families struggle due to “lost wages and additional medical expenses”, with 27% of caregivers reporting a “moderate to high degree of financial hardship as a result of caregiving”.2
In addition, care work and its negative impacts are unequally distributed. Women make up 61% of American caregivers and tend to experience greater levels of emotional stress than their male counterparts.2,5 Ethnic minority caregivers “provide more care than their white counterparts and report worse physical health than white caregivers,” with African American caregivers in particular experiencing higher average intensity caregiving situations and suffering greater financial burdens.2,6 Caregivers in rural situations face additional challenges, including “fewer available formal services, fewer physicians and health education services, transportation difficulties, weather problems in winter, geographic distance and isolation”.2 Physical distance between the caregiver and recipient also adds layers of both logistical and emotional complexities.2 Finally, caring for people with certain impairment types can be particularly complex. Care recipients with cognitive disorders and memory loss may behave unpredictably, and these impairments can cause an additional emotional toll on the caregiver.2
Support for these informal caregivers is critical. In fact, “supporting family caregivers decreases hospitalizations by 51%”.7 Informal caregivers lack many of the institutional supports available to formal caregivers, but technological resources can assist them in managing their many types of needs. One common type of application supports care coordination, streamlining the process of building an informal care team of friends and family members. By making it easier to share information, ask for help, and create sign-ups, tasks can be easily delegated from the primary caregiver to a wider network. Medication management is another common struggle made easier with technology. Each medication has its own dosage and timing instructions, and this can be very challenging, particularly if care recipients struggle with memory, vision, or fine motor skills. Digital resources have made these processes easier. From pill identification to scheduling and reminder systems, many applications are available to help caregivers manage medications for their loved ones.8 Another category of applications is caregiver support. Caring for others can be deeply taxing, and the virtual landscape has increased opportunities for caregivers to support one another and communicate with peers who understand what they’re going through.8 Many caregivers have also turned to technology to help with self care, meditation, mindfulness, and other mental health needs. Finally, digital expansion has put a wealth of information, including webinars, care handbooks, and more, within reach. Education can help caregivers gain a better understanding of their loved one’s conditions and improve care quality. However, it’s important to share trusted resources with informal caregivers.
When we acknowledge the work that informal caregivers are doing and create digital resources to support them, we build stronger communities and improve outcomes for caregivers AND their care recipients. Technology has a critical role. However, it’s also important to recognize the populations that still lack access to digital tools and maintain a focus on equity. Informal caregivers have been ignored for far too long, and we can employ technology to provide support to these devoted family caregivers.
- “Caregiving for Family and Friends - A Public Health Issue.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 30 July 2019, https://www.cdc.gov/aging/caregiving/caregiver-brief.html.
- Family Caregiver Alliance. “Caregiving.” Family Caregiver Alliance, 2009, https://www.caregiver.org/resource/caregiving/.
- “Caregiving.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 25 Nov. 2019, https://www.cdc.gov/aging/caregiving/index.htm.
- AARP, National Alliance for Caregiving. “Caregiving in the United States 2020.” AARP, 14 May 2020, https://www.aarp.org/ppi/info-2020/caregiving-in-the-united-states.html.
- Caregiving in the U.S. 2020. AARP and National Alliance for Caregiving, 2020, https://www.aarp.org/content/dam/aarp/ppi/2020/05/infographic-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.002.pdf.
- National Alliance for Caregiving, and AARP. “Fact Sheet: The ‘Typical’ African American Caregiver.” AARP, May 2020, https://cdn.aarp.net/content/dam/aarp/ppi/2020/05/african-american-caregiver.doi.10.26419-2Fppi.00103.006.pdf.
- “Caregiver Support Improves Outcomes and Reduces Cost.” EFamily Care, 25 Feb. 2022, https://efamilycare.com/.
- Family Caregiver Alliance, and Marie Jobling. “Digital Technology for the Family Caregiver.” Family Caregiver Alliance, 2012, https://www.caregiver.org/resource/digital-technology-family-caregiver/.