Redefining What It Means To Be A Caregiver

Can you believe that we’ve been at this for 18 months already? Whenever I talk to people about the work we’re doing here at Caregiver Collaborative, one of the most common things I hear is that people really struggle to identify as caregivers themselves. Often, people say things like, “I’m not a caregiver, I just help my dad out with things occasionally when he needs it” or, “My parent doesn’t need a caregiver, they just need someone to check in on them once in a while and attend appointments with them.”

More often than not, when we hear the word caregiver, we think of those people who are providing intensive, 24/7 support to a person living with a serious, chronic illness or injury. 

But the reality is that caregiving is so much more than assisting with medical or nursing type tasks or high-intensity care, and it goes well beyond the professional caregivers we often think about. 

Many care recipients need assistance in managing their mental or physical health symptoms, coordinating care, and with tasks associated with daily living, to some degree on a regular or daily basis. Some caregivers provide significant assistance, while others help out with just a few tasks. As such, caregiving often includes what is referred to as “instrumental activities of daily living” (IADL), “activities of daily living” (ADL), and things like emotional or mental health support, financial management, medication management, transportation assistance, and so much more.

Simply put, caregivers provide care, formally or informally, to people who need assistance.

Caregivers may be family members, neighbors, friends, or professionals. Some caregivers live with those whom they provide care, and others live in separate locations.

Generally speaking , there are four types of caregivers:

• Crisis caregivers, or those providing care for someone who is experiencing acute illness.
• Long-term caregivers, or those who provide ongoing care for someone over a significant period of time.
• Long-distance caregivers, or those who live in a separate location, typically far away, from the person they are caring for.
• Sandwich caregivers, or caregivers who provide care for someone while also taking care of other obligations, such as full-time jobs or children. Caregivers in this category may overlap with other categories as well.

Reports on the number of caregivers in the United States vary greatly (largely due to the exact reasons I describe above), but estimates suggest that somewhere around 1 in 5 Americans identify as caregivers. This includes formal caregiving, as well as less formal caregivers, family caregivers, and all kinds of other arrangements where folks provide some level of care for an adult or child sometime in the last 12 months. This amounts to approximately 53 million adults in the United States. Caregivers come from all generations, racial and ethnic groups, income levels, education levels, family types, gender and sexual orientations.Research also suggests that in the last 10 years, the number of less traditional caregivers, like neighbors and friends, is increasing rapidly. This increase is due to a variety of factors, including: 

• • Increasingly aging baby boomer population
  • Workforce shortages and increased cost of long-term services and supports (LTSS) and formal care systems
  • Increased efforts to facilitate home and community based care services
  • An increase in the number of Americans who are realizing that the work they do to support a loved one with health or functional needs is caregiving, and are beginning to identify as such. 

The last point is an important one. Over the last 10 years, many efforts have been made by the government, nonprofit, and the private sectors to help individuals who contribute significant time and effort to support the people in their lives who need it by providing some level of care to identify as caregivers. Funding for things like education, training, support services, respite care, and research is increasing, but still has a long way to go to meet the varying needs of caregivers across the nation. At Caregiver Collaborative, we hope to play a role in continuing this movement of helping caregivers, especially non-traditional caregivers, feel seen, valued, and supported. We hope to help those around caregivers – their employers, teachers, neighbors, and other community members, understand how they can best support them.