It’s About Time

As a young graduate student in 1984, I became extremely interested in family caregivers, those family members who took on the care of aging adults. At the time, little was known about how truly pervasive this role was, but there were projections — and alarms being raised — regarding the “silver tsunami” that was expected to rock the country when the baby boom generation began retiring in 2024. In the 1980s we were really just beginning to study Alzheimer’s disease but had not really understood what would become the massive increase in the number of people suffering from the disease today. Covid-19 did not exist and options for families regarding how to care for their aging loved ones were few. At the time, I wondered why more people weren’t concerned about these caregivers and the children and adolescents who were assuming caregiving roles in their families. I was also amazed with and concerned about college students who were navigating these trends, recognizing how difficult it was to pursue higher education while worrying about/caring for loved ones.

Today, family caregiving has become a critical issue for 53 million American adults providing care for a spouse, elderly parent, relative or special needs child; an additional 5.4 million children/adolescents assist in this care. In 2025, 1 in 4 adult caregivers are aged 18-35, providing care during one of the most demographically dense periods in the lifespan when they are completing educations, entering the workforce, and starting families of their own. We are so fortunate that today there are multiple coordinated, local and national efforts focused on addressing the needs of caregivers of all ages; some of them include caregivers under the age of 18. This has been the result of the work of thousands of highly committed researchers, teachers, advocates and family caregivers themselves. Key achievements since 2020 include:

• The Recognize, Assist, Include, Support and Engage (RAISE) Act Family Caregiving Advisory Council provided its first report to Congress, including a comprehensive review of what was known about family caregiving and outlining 26 recommendations for how federal and state governments and others could be of support to family caregivers (September 2021).
• The RAISE Advisory Council provided the National Strategy to Support Family Caregivers to Congress, outlining hundreds of actions that federal and state governments and the private sector could undertake to support family caregivers (September 2022).
• The National Alliance for Caregiving has served as a leader in support for family caregivers through their Caregiver Nation Summit and policy work. They have recently convened the NAC Cancer Caregiving Collaborative and continue to work with local, state and federal government, in addition to the private sector, to ensure that family caregivers get the resources and support they need.
• The American Association of Caregiving Youth provides much needed support and advocacy to caregiving youth under the age of 18. Although the AAYC, located in Baton Raton, Florida, is currently the only organization dedicated solely to addressing youth caregiving, they work with a network of researchers and practitioners across the US to champion youth who are providing care to chronically ill, disabled, injured or elderly family members.
• Global Neuro Ycare – This organization provides skill training and support to young caregivers in the US and around the world who are providing care to adult loved ones with neurological conditions.
• California Caregiver Resource Centers – These 11 nonprofit resource centers serve family caregivers of adults with chronic and debilitating health conditions, degenerative diseases or traumatic brain injuries. Their focus is to support the caregivers themselves with information, connections to resource such as legal and Medicare experts, and mental health counseling.

I am so proud to include the CSU Shiley Haynes Institute for Palliative Care among those organizations committed to supporting families of patients suffering from serious illness. Two programs of note:

A free, online family caregiver course, focused on the physical and mental health of family  caregivers. Developed by Drs. Judi Phillips and Sharon Hamill of the CSU Shiley Haynes Institute for Palliative Care at CSUSM, this 8-module course includes information on health care decision making, assessments of caregiver well-being, and resources to help caregivers cope.

CSU Palliative Care Pathfinders Program. Working with our colleagues on the campuses of CSU San Marcos, CSU Monterrey Bay, Sonoma State University, CSU Fresno, and San Jose State University, we provide programming to help student support staff and faculty provide the necessary resources to students who are seriously ill, family caregivers, or grieving the loss of loved ones. The CSU Palliative Care Pathfinders program provides these students with necessary resources and support, thereby paving the way for them to graduate, fill workforce needs, and achieve social mobility.

But there is still much work to be done and this work benefits us all. As Rosalynn Carter noted, “There are only four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” Palliative care includes in its foundation the support of family caregivers. We look forward to continuing on this path with all of the amazing people fighting for/working for better lives for patients and the families who care for them.