It’s fitting that National Family Caregivers Month is celebrated at the same time as Thanksgiving. Last week, we paused as a nation to gather with our families and to give thanks for the good things in our lives. What better time could there be to recognize and honor the 53 million people who provide the informal and unpaid care and support that make community living possible for millions of older adults, people with disabilities, and children whose parents are unable to care for them? And when better for us to recognize – and commit to addressing -- the challenges that family caregivers often face.
Today’s family caregivers are expected to perform highly complex tasks, including nursing-related activities that extend well beyond basic day-to-day assistance with things like housekeeping. The experience can leave them financially, emotionally, and physically depleted, and socially isolated.
Recognizing and supporting family caregivers is a public health issue that we cannot afford to ignore. The nation’s system of long-term service and supports could not continue to function without the unpaid contributions of family caregivers; the value of the care they provide for older adults alone is estimated to be $470 billion. Without the support they provide, millions of people would find themselves with no choice but to move to nursing homes and other congregate settings, which carries significant costs to personal finances, public health care resources, and quality of life. And, as we have seen during the COVID-19 pandemic, can have disastrous health consequences.
Similarly, the 2.9 million kin and grandparent caregivers who open their homes—sometimes temporarily, sometimes forever— play a crucial role in supporting children who cannot remain with their parents. Almost half of these caregivers are themselves older adults juggling the changes that come with aging along with the challenges of raising one or more children. While kin and grandparent caregivers represent all demographics, they are more likely than other families to live in poverty. They have been disproportionately affected by the pandemic and many have faced the loss of critical services, such as special education and respite care while at the same time experiencing increases in their responsibilities and expenses.
This year, ACL published two reports to describe the needs of the nation’s family caregivers and kin and grandparent caregivers. Together, the reports offer 48 clear recommendations for reforming the nations systems of services and supports to caregivers.
In September, the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Advisory Council released its initial report to Congress. This document included a comprehensive review of the current state of family caregiving and 26 recommendations for how the federal government, states, tribes, territories, and communities—in partnership with the private sector—can better recognize, assist, include, support, and engage family caregivers.
On November 16, to highlight the specific needs of kin and grandparent caregivers, the Advisory Council to Support Grandparents Raising Grandchildren released its own report to Congress. That report, which included 22 key recommendations, is a powerful and moving testimony to the resilience and grit of a generation of kin and grandparent caregivers who have put their own physical, emotional, and financial well-being on hold to raise children within the embrace of loving families.
Together, the recommendations in these reports have laid the groundwork for the development of a cohesive National Family Caregiving Strategy to address the multi-faceted and complex needs family caregivers face each and every day. From changes to ensure that family caregivers are recognized and included in discussions about the needs of a loved one to ensuring that caregivers have the knowledge, skills, and supports necessary to be in that role, a national strategy for supporting family caregivers will go a long way toward advancing improvements in in the health and social service systems that support family caregivers.
Caregiving Affects Everyone
There’s a well-known saying by former First Lady Rosalynn Carter that very neatly encapsulates the reach and impact of family caregiving, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." Whether we’re on the giving end or the receiving end, family caregiving will touch most of us in some way, at some time.
As National Family Caregivers Month comes to a close, we encourage everyone to read the two reports and join all us in considering how we can use the recommendations, even before the Strategy is released, to begin to better meet the needs of family caregivers.
I also challenge each of us to consider what we could do now, to improve the life of the caregivers we know. Could you offer to pick up groceries or stop by with a cup of coffee for a brief visit? For those of us in the aging and disability networks, could you revamp your local program to be more holistic, taking into account the needs of both the caregiver and care recipient?
Most important, if you are a caregiver yourself, don’t try to go it alone. Reach out, ask for help, and remember to take time for you, wherever and whenever you can. Our National Family Caregiver Month page can help you find the resources that are available to help.
Together, we can make a difference to our nation’s family caregivers, including kin and grandparent caregivers. Please join us!