In her late 20s, Kamaria Moore-Hollis joined the ranks of the 16 million Americans – and 1.5 million millennials - providing care for a loved one living with dementia. According to Kamaria, "It wasn't really a choice.”  Alzheimer’s limits the choices of millions of family caregivers across the country.

It’s estimated that the number of American families touched by Alzheimer’s and related dementias will increase from approximately 5.7 million today to 16 million by 2050. These numbers will translate into many millions more providing care.

All too often, these caregivers, particularly young caregivers of color like Kamaria, struggle to be in two places at once: at home providing daily care to their loved one and at work supporting their employers and co-workers. In fact, 60% of dementia caregivers are providing care while working. These employed caregivers lack support in their communities and at the national level without policies like paid family and medical leave.

Powered by the stories of individuals like Kamaria, UsAgainstAlzheimer’s has mobilized 14 diverse organizations working at the intersections of dementia care, healthy aging, and health equity to launch the Paid Leave Alliance for Dementia Caregivers. With the support of advocates like Lauren Miller and Seth Rogen, co-founders of HFC, and institutions like the Gerontological Society of America, the new alliance will advocate for access to paid leave for family caregivers of individuals living with dementia and other chronic conditions.

The caregiving crisis triggered by the COVID-19 spotlights the need for comprehensive paid family leave policies to support vulnerable families caring for a loved one living with dementia. These policies are vital for addressing the growing national challenge of dementia care.

Our research on employed dementia caregivers finds that nearly 60% report that the utilization of paid leave benefits improved their health and emotional well-being as they provided care. However, less than half reported having access to these benefits. And, only one in three employed caregivers report having paid and flexible medical and family leave options to help them balance work and family responsibilities. A recent survey of dementia caregivers found that two in three thinks that Congress should make paid family and medical leave a priority. We completely agree.

From health equity to intergenerational struggles, the Alliance will highlight the intersectional challenges that family caregivers face when caring for older adults through storytelling and advocacy,  educating policymakers about the power of paid leave to help alleviate these hardships.

Health Equity

The disruption caused by dementia care is a health equity challenge that cuts across gender and race. According Abigail Zapote, the executive director of Alliance member Latinos for a Secure Retirement, “In the Latino community, strong family values often mean that workers also become primary caretakers for elderly relatives and children.” At the same time, approximately one in four Latino and African American dementia caregivers report that their employers are not supportive in providing them the time off they need to care for their loved ones. More than half (60 percent) of those caring for someone living with dementia are women, 19% of which leave the workforce because of their care duties.

Intergenerational Struggle

There are 12 million millennials providing care in the U.S. and about one in six are providing high-stress, high-touch care for a loved one living with dementia. One in three of these young caregivers reported work disruptions due to their caregiving and 14% stopped work entirely because of their caregiving.

"Without access to paid leave, millions of young people...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." 

Our goal is to support the economic, emotional, and health of family caregivers by promoting federal paid leave policies that…

1. Include caregivers for loved ones with serious chronic health conditions.
2. Provide relief for at-home caregivers.
3. Contain meaningful income replacement benefits and job protections.
4. Include workplace policies that allows caregivers the flexibility to accompany their loved one to a medical visit, including clinical research visits.

As former first lady Rosalynn Carter once put it, "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." It’s time for our society to recognize this fact and value care across the lifespan by establishing a comprehensive paid leave policy. Until then, millions of families will be waiting.

For more information on the Alliance visit https://www.usagainstalzheimers.org/alzheimers-and-paid-leave