By Jason Resendez and Stephanie Monroe of UsAgainstAlzheimer’s.

Photo from the “Caregiver Assistance” campaign by AARP and the Ad Council.

During the State of the Union, President Trump touted his administration’s progress on expanding paid leave for parents who work for the federal government. According to the President, “As we support America’s moms and dads, I was recently proud to sign the law providing new parents in the Federal workforce paid family leave, serving as a model for the rest of the country.” While this accomplishment is undoubtedly worthy of praise, it also highlights the unfinished work of establishing a comprehensive paid leave policy that values diverse forms of caregiving, from the cradle to later life. 

Our nation’s 41 million family caregivers remain shamefully undervalued, even as our reliance on their work has never been greater due to diseases like Alzheimer’s, the nation’s sixth leading cause of death. In fact, a new survey by UsAgainstAlzheimer’s finds that two in three dementia caregivers think that Congress should make paid family and medical leave a priority. We fully agree.

Establishing a comprehensive paid leave policy is critical to supporting the more than 5.8 million Americans living with Alzheimer’s or a related dementia and their 16 million family caregivers. This caregiving corps provides an estimated 18.4 billion hours of unpaid care and is critical to our nation’s future economic success.

The struggle to provide daily care to a loved one is particularly challenging for the 60 percent of dementia caregivers who continue to work outside the home while providing care. It’s not surprising that more than half of dementia caregivers report their care responsibilities disrupt their ability to work. At the same time, research from UsAgainstAlzheimer’s finds that access to paid medical and family leave can have a significant positive impact for these caregivers, enabling them to better manage their loved one’s medical appointments, provide ongoing care, and balance work.

The legislation that President Trump praised during the State of the Union provides up to 12 weeks of paid paternity and maternity leave for the birth or adoption of a child. This move represents a tremendous step forward for the U.S. – the only industrialized nation without a national paid leave policy. Unfortunately, in the last hours of the negotiations, benefits were dropped for individuals with serious medical conditions like Alzheimer’s and their caregivers. 

On the 27th anniversary of the passage of the Family and Medical Leave Act (FMLA),  a seminal law that established unpaid leave for employees with qualified medical and family reasons, there is still much work to be done. 

That’s why we paid close attention to two recent Congressional hearings in House Ways and Means and the Education and Labor committees that explored various legislative proposals for a comprehensive paid family and medical leave program. Both Republicans and Democrats on the committees agreed on the need to better support people across the care spectrum. The House Ways and Means committee heard from former Good Morning America host Joan Lunden and her experience as a caregiver to her seven children and for her mother who lived with Alzheimer’s. According to Lunden, “We are in the middle of a caregiving crisis…any paid leave policy should address the full range of caregiving needs that families will face.” 

Several states have passed paid family leave laws that protect individuals caring for a new child or a family member with a serious health condition. These states demonstrate that paid leave can be successful. In California –  the first state to implement a paid family and medical leave policy – the utilization of nursing home care decreased 11 percent and the business community has reported positive effects on employee productivity, profitability, and performance.

But the need goes far beyond the eight states and the District of Columbia with paid family leave laws. By 2050, there will be nearly 14 million people living with Alzheimer’s disease unless a cure is discovered. Over the last three decades, the number of unsuccessful Alzheimer’s drugs has climbed to 146, leaving patients and their caregivers with few options. At the same time, the costs associated with Alzheimer’s are expected to rise to $1.1 trillion by 2050. Paid leave is critical to alleviating our nation’s shared Alzheimer’s challenge – and the economic burden it represents – while the community awaits a medical breakthrough. 

So, as we celebrate the anniversary of the passage of FMLA, Congress and the President must continue their bipartisan efforts to fully recognize the needs of millions of caregivers — parents, grandchildren, sons, and daughters — by establishing a comprehensive policy. Until progress is made, families will continue to juggle and hope. 

Jason Resendez and Stephanie Monroe co-chair the Alzheimer’s Disease Disparities Engagement Network, a program of UsAgainstAlzheimer’s.

The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.