Millions of Americans contribute unpaid labor in America every single day. 43.5 million to be exact.¹ They system has a name for them, but many of them carry out their role unaware that there’s a name for it.

We’re talking about family caregivers.

Family caregivers are out here making the world go ‘round, taking care of their parents, spouses, adult children with disabilities, and other people they consider family. 

Oftentimes, family caregivers are overburdened and stressed out. Even if they had time to search for help, it’s hard to know where to begin if you don’t even know there’s a name for what you are doing. 

We hear the healthcare system saying it’s hard to help family caregivers because we don’t “self-identify.” I guess by “self-identifying,” they expect us to scream from the rooftops that they are helping an aging or disabled loved one in some capacity.

Even when healthcare and social service professionals in the see us in the room and are aware we help our loved ones in some capacity, often the only times our needs are addressed are is when something is seriously wrong. They will document that we are the family caregiver but never actually utter the word.

So, whose responsibility is it to identify and educate family caregivers?

The most common response I’ve heard is “the hospital social worker.” The social workers at hospitals certainly have a critical role in smoothing transitions from the hospital, whether they be to a patient’s home or a rehab facility, but with so many patients to cover, there’s no way they have the time to suggest basic resources. 

What if a person never gets sick enough to go to the hospital, but they still need assistance to make it through their day or manage their affairs? 

Some argue, then, that it would be the responsibility of primary care physicians to inform those caring for aging loved ones or people with disabilities of information and resources that can help them. Medical doctors do not study the same information during their coursework as social workers. Not only that, they are booked back to back to back. Their ability to look outside of the physiological aspects of health are somewhat limited. Our medical system does not allow them the time to look any deeper into what causes our health issues. What makes you think they have the time to become versed in meal delivery programs or how family caregivers can get respite? Unless you have a geriatric doctor, or one with personal caregiving experience, your chances of that are slim.

Why not the nurses? Well, because nurses are even busier than the doctors. They can’t help us figure out how we can get what we need to take care of our loved ones, because they have they’re busy taking care of entire hospital wings.

One of the number one answers we hear is for people to call their local Area Agencies on Aging or Aging & Disability Resource Centers. While Older Americans Act (OAA) funding is available to support family caregivers, according to AARP, of the funds that are “appropriated for family caregiver supports is a small fraction of the unpaid care they provide, less than 1/25th of 1 percent.”² Here in Kansas City, the AAA’s portion of the funding for supporting family caregivers is 5% of a whopping $7 million budget for their older adult programs.³ Since many of them do not rely on OAA funding alone, most of them are constantly working to fundraise to continue offering services and supports, they have limited resources and staff to dedicate to the needs of family caregivers. And besides, let’s not forget their focus is older adults.

Senior Centers are a great place for family caregivers to get connected to information, that is, if they ever go inside. Senior centers can receive OAA funding to offer info and support to caregivers, but they are also understaffed and underfunded. In many cases, they just refer people back to the Area Agency on Aging.  

For many people in need, 2-1-1s are often their first call. 2-1-1 is a nationwide network of information and referral organizations. 2-1-1s connect millions people with resources to meet their basic needs every year. 2-1-1 is great, but only if a caller is able to articulate to the person on the other end of the phone what kind of help they need. 2-1-1 staff are trained to provide quick answers to immediate needs. They do not provide intensive family navigation. 

Even the federal government realized that it was so hard for people to navigate systems, they have been working on ways to make it easier for people to get the support they need. They launched the No Wrong Door Initiative, geared at helping states connect their multiple points of entry into the service system into a one-stop shop for long term services and supports (LTSS) for anyone who needs help.  According to ACL.gov, “NWD systems provide information and assistance not only to individuals needing either public or private resources, but also to professionals seeking assistance on behalf of their clients and to individuals planning for their future long-term care needs. NWD systems also serve as the entry point to publicly administered long-term supports, including those funded under Medicaid, the Older Americans Act, Veterans Health Administration, and state revenue programs.”⁴

So what about the No Wrong Door Agencies? Even though there is a movement to streamline the way LTSS are offered to families, most states do their own things. So even with federal support, processes for getting people what they need and getting everyone who helps us on the same page can be cumbersome. 

Why It’s not the System’s Responsibility

A significant number of people who are in need of long term services and supports from these systems aren’t even eligible for them in many cases. The majority of formal long term services and supports are tax-payer funded (whether they came out of your check or you donated to the cause). Many of them are based on financial need.

Massive numbers of families putter down the road of aging without ever interacting with the formal service system.

The problem with relying on the service system to give us answers is that the system is not equipped to troubleshoot caregiving. Caregiving is a complex human experience. Beyond navigating services, we need help to navigate the emotions of caring and support to build self care practices. We need different levels of support throughout our journeys. Sometimes we just need quick answers. Sometimes we need our hands held. 

Here’s the real question:

Like Denise Brown at Caregiving.com said, “What if we didn’t wait for individuals to say, “Hey, I’m a family caregiver!” and just assumed everyone is until they tell us they aren’t?”⁵

Why is it that we’re waiting for encounters with the service system to get them the help they need? Why are we counting on the system to actually be helpful, supportive, and proactive?

Why are we putting the burden of connecting families to the support they are looking for back on them? 

So whose responsibility Is it, anyway?

It is our collective responsibility, as family members, friends, neighbors, coworkers, members of faith communities, and participants in the marketplace, to make sure people know what they’re doing has value and that there’s a name for it. 

The community. That’s who we should be teaching about the common stages, turning points, emotions and needs that people caring for their loved ones have. 

That way, when we walk in their front door, and you see us caring for our mom, dad, grandma, uncle, brother, adult child… you can give us the secret code:

Family Caregiver.

After all, word-of-mouth is still the best referral source. 

How did you first find out you were a “family caregiver?” Who told you? How did it impact your caregiving experience? We’d love to hear your experience. Share it in the comments below.

Sources:

1. https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
2. https://www.aarp.org/content/dam/aarp/ppi/2019/02/older-americans-act.pdf
3. https://www.marc.org/About-MARC/finance/2019BudgetandWorkPlan.aspx
4. https://acl.gov/programs/connecting-people-services/aging-and-disability-resource-centers-programno-wrong-door
5. https://www.caregiving.com/2017/12/what-if-we-assume-everyone-is/