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National Caregiving Learning Collaborative

National Caregiving Learning Collaborative

Two unique learning collaborative cohorts strengthening caregiver support

The National Caregiving Learning Collaborative (NCLC) consisted of two unique learning collaborative cohorts. Together, these two cohorts were made up of 46 participants who represented 23 organizations operating in 15 states. The learning collaboratives consisted of 5 virtual sessions where participants learned about relevant topics and shared their experiences and best practices. Each virtual session was followed by a 5-week action period, during which organizations assessed how well their organizations met the needs of caregivers in their community, selected a program to focus on to either develop or enhance to better support caregivers, and took steps to plan, implement, and evaluate their efforts. Both learning collaborative cohorts covered the same topics, and focused on strengthening caregiver support as a central part of program offerings.

While the first learning collaborative cohort focused on organizations that were currently utilizing some type of levy funding, recruitment efforts shifted for the second cohort to include organizations with diverse funding sources. The goal of this shift was to attempt to build a learning collaborative model that could work for all organizations, regardless of funding source, that desired to develop or enhance their support and services for caregivers.

Unpaid caregivers provide enormous amounts of care and support to older adults and people living with disabilities.

Why does caregiving matter?

Unpaid caregivers may struggle with high levels of stress and feelings of burnout.

This group is often made up of family, friends, and neighbors and they are often the individuals who start providing care before any formal long-term services and/or supports are sought out. According to AARP's 2023 update of their report, Valuing the Invaluable: Strengthening Support for Family Caregivers, the value of care provided by informal family caregivers in 2021 was $600 billion. This work is done by 38 million caregivers in the United States who provide 36 billion hours of care without being paid. More than 60% of these caregivers remain in the workforce, and more than 30% live with a child or grandchild. Not only is there an overwhelming absence of support for these caregivers from local, state, and federal governments, but many of these individuals do not identify or think of themselves as being caregivers, which makes them difficult to reach.

These factors combined with the role these individuals play in helping older adults remain as independent as possible for as long as possible makes it critically important to find ways to support caregivers in our communities. As our population continues to age while our birth rates decline, we will continue to see a mismatch between our shrinking supply of caregivers and our growing demand for care.

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Federal Support for Caregiving

National Family Caregiver Support Program (2000)

In November 2000 Congress reauthorized the Older Americans Act and created the National Family Caregiver Support Program (NFCSP). The NFCSP provides grant money to states (based on the 70+ population) to fund initiatives to support family and informal caregivers who provide care to older adults in their homes so they can remain in them and be independent for as long as possible. The goals of both of these funding initiatives are to provide critical supports and services for caregivers, so that they may continue to assist older adults aging in place and keep their independence for as long as possible, thus avoiding more expensive care in a long-term care or “institutional” setting.

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RAISE Family Caregiving Act (2018)

The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018) is the most recent federal effort that specifically focuses on supporting caregivers, and involves developing a national family caregiving strategy. The goal of this strategy is to identify “actions that communities, providers, government, and others are taking and may take to recognize and support family caregivers.” These actions will promote inclusion of caregivers across healthcare and long-term care settings, in assessing and planning services for individuals and caregivers, and throughout care coordination, respite care, and “financial security and workplace issues.” 

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