Nearly 44 million Americans are caregivers for family members older than 65 with chronic illnesses or functional, cognitive, or sensory impairments. They are performing critical daily tasks such as managing medications and coordinating health care and long-term services and support. Older adults who would have been in a nursing home years ago, may instead be cared for at home. And when these older adults go to a hospital, they wind up back at home “quicker and sicker” than ever before requiring more support from family members than ever before.
In other words, the role of family caregivers is vital to our system healthcare delivery. And many caregivers see their work as part of the most sacred family obligations. However, millions of these caregivers are facing many challenges in their roles, all the more so because the demands on a caregiver can be so unpredictable. Caregivers function in isolation at a significant emotional expense, compounded by high levels of stress and depression. Their own physical and financial wellbeing often suffer as well.
But too little has been done, by either the private or public sectors, to address the challenges of those family members who devote so much of their lives to addressing the challenges of older adults with chronic illnesses and disabilities.
The Role of Adult Day Services
Eight years ago, Archstone Foundation and 13 other funders in aging supported a consensus committee report on family caregiving by the National Academies of Science, Engineering, and Medicine. The report, “Families Caring for an Aging America,” proposed ways to help family caregivers perform their tasks, protect them from the added stress in their lives, and limit the physical and financial strain of their caregiving.
Adult Day Services (ADS) were held up by the report as a benefit for both family caregivers and the people they care for. ADS serve frail older adults by providing support for through social interaction, planned activities in a group setting, and sometimes even health care, often enabling them to continue living at home. ADS also serves as an option of respite for caregivers.
One of the National Academies’ recommendations was to “strengthen training and capacity of health care and social service providers to recognize and to engage family caregivers and to provide them evidence-based supports and referrals to services in the community.” The need for this was particularly acute for family caregivers in diverse family settings. Congress joined in, passing the RAISE Family Caregiver Act, which established the Family Caregiving Advisory Council tasked with creating the country’s first national Family Caregiver Strategy. One of the Council’s initial recommendations was to increase the “availability of high-quality, setting-appropriate, and caregiver-defined respite services to give caregivers a healthy and meaningful break from their responsibilities.”
As a result, in 2018 Archstone Foundation launched an initiative to support family caregivers of older adults through adult day services programs here in California. Our priorities were to strengthen the capacity of ADS programs to support family caregivers, increase the programming that has proven to help family caregivers, and support strategic efforts for ADS providers to build toward long-term sustainability. The core of our initiative was $1.5 million in grants to five ADS providers in Los Angeles and Orange counties to enhance or create programs and services explicitly for family caregivers.
These supports included:
- Counseling and support groups for family caregivers;
- Training and classes to develop family members’ caregiving skills and knowledge (or partnering with organizations who could provide these services);
- Assuring the new programming was culturally appropriate and available in families’ preferred languages;
- Extending hours of operation so caregivers could have additional respite time or adjust to varying work schedules;
- Regularly assessing caregiver needs and the impact of the new programs and services.
Our executive summary and full report make clear that increased caregiver engagement within ADS locations not only improves the quality of care for older adults but also helps relieve caregivers’ mental and physical stress.
Archstone Foundation has supported family caregivers through its grantmaking for two decades and will continue to do so through our new Three Ts strategy--Teams, Training and Technology. This work remains engrained in our mission to improve the lives of older Californians and their caregivers.
