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Reports

FCA Reports

San Francisco Bay Area State of Caregiving Reports– Family Caregiver Alliance conducted interviews and surveys with Bay Area caregivers and service providers to map out to scope of their needs and propose policy solutions.

Picking up the pace of change: Scaling services for a changing caregiver profile, Evaluation of the California Caregiver Resource Centers’ service delivery and system change– Caregivers served by the 11 California Caregiver Resource Centers (CRCs) provide complex and intense care. The CRCs collect data on California family caregivers and the services that they receive to measure impact and meet future needs. This data is published yearly in an evaluation conducted by the Family Caregiver Institute at the UC Davis School of Nursing.

2023 State by State Caregiver Data (September 2023) Family Caregiver Alliance is pleased to announce a 2023 update to our 50 State Caregiving Profiles. These profiles provide insight into data points like the cost of care in each state, as well as the presence or absence of caregiver friendly policies. This data is commonly cited by news media and researchers when describing family caregivers.

California’s Hidden Dementia Care Asset: Social Workers (Published March 2024) –

Family Caregiver Alliance (FCA) and RUSH University Medical Center’s Center for Excellence in Aging and its Center for Health and Social Care Integration (CHSCI) partnered on a study that examines the terminology, competencies, and training required for professional and paraprofessional staff working with persons and families dealing with a dementia diagnosis. This study was funded by CalGrows, CA Department on Aging, the workforce enhancement initiative that supports goals in the CA Multisector (Master) Plan on Aging. 

The project goal was to understand opportunities to leverage community professionals better—focusing on social workers—to improve outcomes for persons living with dementia and their caregivers.

Final Report from the California Task Force on Family Caregiving– Family Caregiver Alliance participated in this two-year taskforce under Assembly Concurrent Resolution 38 (Cheryl Brown) to create policy recommendations to improve caregiver support. The final report included seven recommendations.

Home Alone Revisited: Family Caregivers Providing Complex Care– This study builds on the landmark Home Alone study, which was the first national look at how family caregivers are managing medical/nursing tasks in the home setting, that are typically performed by trained professionals in hospitals. Home Alone Revisited affirms many of the findings of the 2012 study and adds new information about targeted issues.

FCA Executive Director Kathy Kelly is an author on this paper.

Listening to Family Caregivers: The Need to Include Family Caregiver Assessment in Medicaid Home- and Community-Based Service Waiver Programs- If family caregiver needs are not assessed and addressed, their own health and well-being may be at risk, which may lead to burnout—jeopardizing their ability to continue providing care in the community. This research report presents findings from the first detailed analysis of family caregiver assessment tools and processes in use by the states in Medicaid Home and Community Based Services (HCBS) waiver programs.  It explains the importance of assessing the needs of family caregivers, and highlights findings from a 50-state survey—describing the family caregiver questions asked in Medicaid HCBS assessment tools, and explaining how those states that assess caregiver needs use the assessment information. 

FCA Executive Director Kathy Kelly is an author on this paper.

Other Noteworthy Reports

Family Caring for an Aging America (National Academy of Sciences, Engineering, and Medicine)– National Academies of Sciences, Engineering, and Medicine convened an expert committee to examine what is known about the nation’s family caregivers of older adults and to recommend policies to address their needs and help to minimize the barriers they encounter in acting on behalf of an older adult. The resulting report, Families Caring for an Aging America, provides an overview of the prevalence and nature of family caregiving of older adults as well as its personal impact on caregivers’ health, economic security, and overall well-being. The report also examines the available evidence on the effectiveness of programs and interventions designed to support family caregivers. 

Valuing the Invaluable 2023 Update: Strengthening Supports for Family Caregivers- Family caregivers fill an essential role in our fractured long-term services and supports (LTSS) system. In 2021, the estimated economic value of family caregivers’ unpaid contributions was approximately $600 billion, based on about 38 million caregivers providing an average of 18 hours of care per week for a total of 36 billion hours of care, at an average value of $16.59 per hour. This conservative estimate does not consider the financial cost of care (out-of-pocket and lost wages) or account for the complexity of care provided (i.e., medical/nursing tasks). 

The Forgotten Middle: Housing and Care Options for Middle-Income Seniors in 2033 (NORC at the University of Chicago)-A new NORC analysis updating the groundbreaking “Forgotten Middle” study finds that there will be 16 million middle-income seniors in 2033, many of whom will struggle to pay for the health, personal care, and housing services that they need. For instance, excluding home equity, nearly three-quarters of middle-income seniors in 2033 will have insufficient financial resources to pay for assisted living, if they need and want it. Even with home equity, nearly 40% will not be able to afford assisted living.

The Aging of the Baby Boom and the Growing Care Gap: A Look at Future Declines in the Availability of Family Caregivers (AARP Public Policy Institute)– This paper uses a “caregiver support ratio” to document the declining availability of family caregivers to provide Long Term Services and Supports (LTSS) between 1990 and 2050. It defines a “caregiver support ratio” as the number of potential caregivers age 45-64 for each person age 80 and older.  It documents the dramatic widening of the care gap nationally and in all 50 states and the District of Columbia, as Baby Boomers age into their 80’s, beginning in 2026.  The report also highlights sociodemographic trends that may influence the future supply of family support for the frail older population.

Alzheimer’s Disease and Related Dementias Facts and Figures in California: Current Status and Future Projections (CA Department of Public Health)– This data rich report tells the story of the broad and significant implications that the impending increased prevalence of Alzheimer’s and other related dementia will have on California’s businesses, public programs, and affected families.