Longer-term goal to pass a permanent comprehensive paid family leave law

Washington, D.C. (May 21, 2020) – A new alliance of advocacy groups today urged Congress to include paid leave protections for people caring for adult loved ones with chronic conditions such as Alzheimer’s disease and dementia in the next COVID-19 coronavirus relief legislation.

The Paid Leave Alliance for Dementia Caregivers believes that protections for adult caregivers in the COVID-19 legislation would be an important first step towards a comprehensive paid leave policy to address the growing national challenge of dementia and family care. There are 5.8 million Americans living with Alzheimer’s or a related dementia who are cared for by more than 16 million family caregivers, who provide an estimated 18.4 billion hours of unpaid care with a total value of $244 billion.  

The HEROES Act, which was passed by the U.S. House of Representatives on May 15, provides critically needed paid and sick leave protections for caregivers of older family members with serious medical conditions such as Alzheimer’s disease and dementia. UsAgainstAlzheimer’s (UsA2) called for the bill's paid leave provisions to be quickly adopted by the Senate to help ease the economic hardship caused by COVID-19 on millions of working caregivers.

“The caregiving crisis triggered by the COVID-19 coronavirus spotlights the need for comprehensive paid family leave policies to support vulnerable families caring for a loved one living with Alzheimer’s or another chronic disease,” said Stephanie Monroe, executive director of AfricanAmericansAgainstAlzheimer’s, a network of UsAgainstAlzheimer’s. “Comprehensive paid family and medical leave is critically important for these families and vital for addressing the growing national challenge of dementia care.”

“The COVID-19 crisis is the latest example of how caregivers of older family members with serious medical conditions are too often ignored in paid leave protections,” said T.J. Harvey, executive director, Alzheimer's Mississippi. “Adult day services may continue to be limited or may not immediately offer person-to-person care due to COVID-19, making the need for support of family caregivers is even greater. Congress must guarantee comprehensive paid family and medical leave that applies to family caregivers during this emergency.”

Until the HEROES Act, caregivers for individuals 50 and older living with chronic conditions such as Alzheimer’s were mostly excluded in the federal response to the COVID-19 coronavirus – the Families First and CARES Acts. Current law leaves out nearly 68 million workers by excluding large businesses with more than 500 employees from coverage as well as those who have lost caregiving for their relatives due to their own COVID-19 status, shutdowns of care facilities and caregiver quarantine.

The Paid Leave Alliance for Dementia Caregivers comprised of patient and caregiver advocacy organizations including UsAgainstAlzheimer’s, Lewy Body Dementia Association, Alzheimer's Los Angeles, American Medical Women's Association, Alzheimer's Mississippi, The Gerontological Society of America, American Geriatrics Society, Alzheimer’s Orange County, Alliance for Aging Research, Milken Institute Center for the Future of Aging, HFC, Global Alzheimer’s Platform (GAP), the Association for Frontotemporal Degeneration, Alzheimer’s New Jersey, and Latinos for a Secure Retirement.

“Dementia family caregivers are facing unprecedented challenges from COVID-19, escalating the importance of dementia stakeholders standing together,” said Angela Taylor of the Lewy Body Dementia Association. “We are pleased be part of the Alliance in order to speak with one voice on the paid leave policy debate.”

The Alliance’s four core principles for a comprehensive long-term solution are that federal paid leave policies must include caregivers for loved ones with serious chronic health conditions, provide relief for at-home caregivers, contain meaningful income replacement benefits, and include workplace policies that allows caregivers the flexibility to accompany their loved one to a medical visit. 

“In the Latino community, strong family values often mean that workers also become primary caretakers for elderly relatives and children,” said Abigail Zapote, executive director of Latinos for a Secure Retirement. “We are proud to join and support the Paid Leave Alliance and the mission of improving quality of life of long-term caregivers by advancing federal paid leave policies.”

Research by UsA2 of employed dementia caregivers found that less than half (49 percent) reported having access to paid leave benefits, with 54 percent of that group using the benefit to care for a loved one. Only one in three employed caregivers report having paid and flexible medical and family leave options to help them balance work and family responsibilities. This lack of paid leave and flexible work options means that caregivers often struggle to be in two places at once: at home providing daily care to their loved ones and at work supporting their employers and co-workers. UsA2’s data shows that this is especially true of millennials and less-educated caregivers.

"Without access to paid leave, millions of young people - including 1.5 million millennials providing dementia care - live in fear of losing their jobs because of their caregiving roles," said Lauren Miller and Seth Rogen, co-founders of HFC. "It's time for Congress to establish a paid family leave policy that supports this growing community." 

The UsA2 research found that six in 10 dementia caregivers report working while providing care, and many find it necessary to pay others to care for their family members, causing significant financial strain. In fact, 60 percent of all employed dementia caregivers experienced financial pressures caused by not being able to work or needing to reduce their number of work hours during their loved one’s illness, with 27 percent of employed caregivers going into debt caring for their loved one.

“Too often, policymakers focus only on paid leave to care for children, neglecting the millions of working adults who provide care to older adults,” said Nora Super, senior director of the Milken Institute Center for the Future of Aging. “These elder caregiving responsibilities can lead to lost benefits, promotions, and even jobs if work interruptions occur. We must expand paid family and medical care for elder care, especially for caregivers of people living with dementia, who are impacted more severely by the financial and emotional challenges than non-dementia caregivers.”

Additional Quotes on the Need for Comprehensive Paid Family Leave

"The impact of COVID-19 on seniors far outweighs its impact on the general public.  They have less access to healthcare, transportation, and are more likely to be food insecure.  Allowing caregivers time to adequately support their loved one over 65 with Alzheimer's or another impairing condition is vital to our future." –  Jim McAleer, MPA, Chief Executive Officer, Alzheimer's Orange County

“Many of our members conduct research and translate it to evidence-based practice and policy for persons with dementia and their caregivers.  Improving systems that can help support family caregivers and contribute to their health, social, and financial stability benefits all of us.  The Gerontological Society of America is pleased to participate in the Alliance.” – James C. Appleby, BSPharm, MPH, ScD (Hon), Chief Executive Officer, The Gerontological Society of America

“Family dementia caregivers are the backbone of our long-term care system. They provide selfless care while facing increased personal financial burden, emotional stress, and negative impacts on their own health. There a very few protections for family caregivers, and often limited access to respite. In order to provide quality care for those who are living with chronic conditions like Alzheimer’s and other dementias, we need to provide access to paid family and medical leave for those who are providing the care. Their work is invaluable, and it is time to protect these family caregivers.” – Heather Cooper Ortner, President & CEO, Alzheimer’s Los Angeles

“Under current policy, most American workers—both geriatrics health professionals but also the millions of caregivers they support—remain without access to paid family leave. This is a key social support as more of us manage family health concerns while also preparing for the opportunities and challenges that come with living longer. The AGS firmly believes that federal protections must empower us all to recover from serious illnesses and care for seriously ill family members.” – Nancy Lundebjerg, MPA, Chief Executive Officer, American Geriatrics Society

"As a provider of care services for New Jersey families touched by dementia, we know firsthand the economic burden family caregivers face. Any discussion of paid family leave must include provisions for family caregivers of those with Alzheimer’s disease and other dementias.   Supporting the economic mobility of caregivers as they balance care and work is critical."          – Kenneth Zaentz, President and CEO, Alzheimer's New Jersey

"Paid family leave should benefit the health of individuals touched by chronic diseases like Alzheimer's and also their ability to participate in life-saving clinical research. Without workplace policies that support caregivers and their loved ones in participating in clinical trials, the discovery of a cure for Alzheimer's will be severely challenged." – John Dwyer, President, Global Alzheimer's Platform (GAP)

For more information on the Paid Leave Alliance for Dementia Caregivers, visit https://www.usagainstalzheimers.org/alzheimers-and-paid-leave

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About UsAgainstAlzheimer’s

UsAgainstAlzheimer’s (UsA2) is a disruptive advocacy and research-focused organization that is pushing for expanding treatments and accelerating towards a cure for Alzheimer’s disease. UsA2’s transformative programming is laser-focused on proactive brain health across the lifespan and understanding what matters most across the lived experiences of those affected by Alzheimer’s in the service of preventing, treating and curing this disease.  We are working to ensure that all communities have their voices heard and get a chance to be brain healthy from the earliest years while building