New Federal Coronavirus Legislation Still Leaves Big Gaps for Dementia Caregivers

March 27, 2020 - Stephanie Monroe and Jason Resendez

The $2 trillion federal legislative package to respond to the COVID-19 coronavirus highlights the enormous gaps that still exist for family caregivers struggling to balance work while providing care during this unprecedented public health and economic crisis.

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The legislative package is a vital bipartisan step to help millions of people, businesses, governments and organizations affected by our nation’s COVID-19 crisis. But it is disappointing that Congress stopped short of fully protecting family caregivers of older adults and individuals living with chronic conditions such as Alzheimer’s and dementia.

UsAgainstAlzheimer’s mobilized more than 20 national aging organizations to call on Congress to expand emergency paid leave provisions in the legislation to cover family caregivers for individuals vulnerable to COVID19, including the nearly 6 million Americans living with Alzheimer’s disease and related dementias. More than 1,200 of our grassroots advocates wrote letters urging action for dementia caregivers.

We believe that our advocacy – in partnership with mission aligned groups - resulted in some small and hopeful signs of progress in the bill.

The legislation’s Pandemic Unemployment Assistance provision will allow qualifying individuals to claim unemployment if they are unable to work (or telework) to due to: COVID-19 diagnosis or symptoms; the need to provide in-home care  to an individual (including an adult) who has been diagnosed with COVID-19; or the need to provide care due to closures of facilities, including those that provide adult care for their loved ones. This is important because previously Congress had stricken, on at least 2 occasions, provisions protecting adult caregivers and their loved ones (such as those living with Alzheimer’s) who are receiving in-home or out of home care and services.

We are hopeful the addition of the unemployment assistance provision signals an acknowledgment of the importance of protecting all individuals regardless of their age, as Civil Rights laws require.

More than 5.8 million Americans live with Alzheimer’s or a related dementia and more than 16 million family caregivers provide an estimated 18.4 billion hours of unpaid care – valued at $244 billion. Comprehensive paid family and medical leave is critically important for these families.

A recent survey by UsAgainstAlzheimer’s found that two in three dementia caregivers think Congress should make paid family and medical leave a priority. In addition, research from UsAgainstAlzheimer’s found that one in two employed dementia caregivers reported that the utilization of paid leave benefits improved their emotional well-being. It’s clear that paid leave can help alleviate the hardship of dementia care on working family caregivers. Leaving this community behind greatly impacts the financial and emotional well-being of millions of American families.