Family caregivers are undoubtedly the backbone of the United States healthcare system. Despite this, their contributions, needs, and struggles are too often overlooked and misunderstood. Thankfully, this is changing. Family caregivers are getting the attention and research they have long deserved. In 2018, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiver Act of 2017 became law.
In addition to the goal of helping caregivers now, this act set out to improve the infrastructure for the future of care. The population of Baby Boomers is aging and the number of available family caregivers to care for this population is declining. In 2010, there were more than seven potential caregivers for every high-risk elderly person. By 2030, they expect this number to decline to four potential caregivers for every high-risk elderly person. By 2050, it will be less than 3 to 1. (Source)
Therefore, improving the infrastructure for family caregivers now is critical. Without action, there will be even more strain on each family caregiver over the next 30 years, and many elderly adults will not be to find someone to provide them with care at all. This situation would create a national crisis-level strain on our healthcare system.
The Process: Goals and Methodology
With these truths of present and future caregiving setting the scene, the REACH Act set out with three primary goals:
- To form the first Family Caregiving Advisory Council
- To study caregivers across the country and develop a report
- Present that report to Congress along with recommendations for developing a national family caregiver strategy for the United States
Once the council had formed, they took the next two years to speak to and learn about family caregivers nationwide. Family caregivers come in all regions, demographics, and socioeconomic statuses, so it was important to take the time to understand the complexities of caregiving in its many forms.
The council released its report this month. This report includes an overview of many of the issues family caregivers face today and recommendations for how the United States can help support caregivers in the future.
Overview: The Family Caregiving Advisory (FCA) Council Report Findings
Before we present the recommendations, let’s explore the FCA Council findings. They found that:
- The number of caregivers reported nationwide is grossly underestimated and difficult to calculate.
Because of differing definitions of “family caregiver,” many segments of caregivers are unaccounted for. Examples include grandparents caring for children, children under the age of 18 caring for adults in their home, young adults caring for their siblings, etc. - Despite the large margin of error, over one in five American adults provided significant care for another adult within the last 12 months.
- Large differences exist in different demographics.
“African American and Hispanic caregivers are more often in high-intensity care situations than white and Asian American caregivers.” (Source) - The idea that caregiving consists of primarily personal tasks is outdated.
60% of caregivers assist with at least one task of daily living, but they also help with other tasks. These tasks include physical and mental health care support (giving medicines, pills, injections, etc.), keeping their care recipients engaged and active in activities that enrich their mental health, managing administrative tasks (such as phone calls, pharmaceutical refills, appointments), transportation, and more. - Children and teens that provide care to an adult or sibling are widely overlooked.
This leads to social struggles, early maturity, and many physical and emotional challenges for caregiver youths. For example, some children reported struggling with the weight of a family member when they had to help them in and out of chairs. They also reported a fear of causing harm or injury. - The number of young people caring for family members has increased because of the COVID-19 pandemic.
- Caregivers struggle to ask for help.
There are so many facets to their responsibilities that it’s hard to decide where to start with the request. - Many caregivers feel that they have no one to turn to – no one who they can even ask for help or respite.
- Without family caregivers, long-term health services would crumble.
“[They are] the backbone of the system.” – James Murtha, MSW, disability advocate & Family Caregiving Advisory Council Member. - There are significant financial burdens on caregivers.
What creates that financial burden is both complicated and personal. It may include many things, such as cost of medical care, loss of hours at work, loss of income from the disabled family member, and unexpected costs (like transport, home modifications, extra daycare, etc.) - There is no one-size-fits-all solution.
Click here for the full report and source of the above list.
Summary: The FCA Report Recommendations
After the FCA Council had identified the primary issues, they compiled their findings and created five primary recommendations. The FCA presented its recommendations in its report addressed to Congress.
There are the five priority recommendations that were released as a result of the ACL Council report:
- The US needs an increased awareness of family caregiving.
If family caregivers do not identify themselves as caregivers, it will be difficult to connect them with available resources. It is not helpful to simply increase resources if those who need them cannot find them. - Integrating the caregiver into processes and systems that had previously left them out.
Often, family caregivers are seen as holding an unofficial role in care. This can leave them left out of conversations, programs, facilities, etc. that would benefit both them and the person in their care. - Increased access to services and supports to assist family caregivers.
There are not enough services, resources, grants, and support for family caregivers. Many caregivers cannot lead a normal life outside of care or otherwise see their life tremendously affected. Caregivers, both now and in the future, need access to additional services, support, and resources to better shoulder the burden of care. - Increased financial and workplace protections for caregivers.
Currently, there are no federal protections for caregivers in the workplace. “Caregiver” is not a recognized title or responsibility that employers need to consider. This leaves caregivers vulnerable to discrimination if their outside-of-work responsibilities impact their job. - Better and more consistent research and data collection.
Finally, this cannot be the end of the studies of this topic. The ACL council found an incredible amount of information, and they recommend continued research and studies into this issue.
(Source)
Closing Thoughts
Family caregivers are the unofficial backbone of our medical system and the U.S. is working to create federal guidelines and support for them. This is excellent news for the future of care in the United States. The state of California is one of the most progressive states for family caregivers and has passed many laws to provide caregivers with support. There is, however, a lot of room to improve and the ACL Council has laid a great framework toward that goal.
The California Caregiver Resource Centers are a network of eleven independent 501(c)3 not-for-profit organizations across California that were created to be a free resource for caregivers in the state of California. We would love to connect the family caregiver in your life with their local Center, where they can talk more about local programs for caregivers, answer questions, and explain how they can best support the caregiver in your life.
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