Dementia and caregiving: It's time for paid family leave

My dad's hearty laugh and sparkling eyes faded — and his care needs grew — as dementia set in.

For his last few years, my dad lived in a care facility. The memory care unit staff treated him well. But he needed more than the staff. He needed my brothers and me to help him navigate his changing needs.

Sometimes all he needed was a kiss on the cheek and a chocolate bar. But other times he needed help that we could only manage during work hours. Things like care conferences, medical appointments and other official business.

Fortunately, we all had employers that gave us paid time off when we needed to help him for a few hours or days.

Millions of other workers in the U.S. are not so lucky. Many employers offer no paid family or medical leave, or any paid leave at all, for that matter. This forces many workers to choose between caring for a seriously ill family member and their financial security.

An estimated 5.7 million people in the U.S. are living with Alzheimer's dementia, the most common form of dementia, and the numbers are growing as the population ages. The Alzheimer's Association reports that 1 in 10 people 65 and older in the U.S. has Alzheimer's dementia.

More than 16 million people, mostly family members, provide unpaid care for people with Alzheimer's or other dementias. According to 2017 data from the National Alliance for Caregiving, 6 in 10 dementia caregivers were employed in the previous year while they provided care to their loved one.

So, paid family and medical leave is left to the whim of employers. According to the U.S. Bureau of Labor Statistics, only 17 percent of the workforce has paid family leave benefits through their employers. Higher-paid workers are far more likely to get paid family leave than lower-paid workers.

A federal bill being reintroduced in the coming weeks — the FAMILY Act — would go a long way toward addressing this country's caregiving inequities. It would enable workers to take leave with partial pay for the birth or adoption of a child, for their own or a family member's serious health conditions, or for certain military caregiving and leave purposes.

Under the bill, workers could take up to 12 weeks of leave. It would provide employees with two-thirds of their wages, up to a cap, for that period. Employees, employers and self-employed workers would make small payroll contributions to fund the program. The contributions would be less than $2 per week for a typical worker.

This bill would make paid leave available to all eligible workers, not just new parents, and that is important. Approximately 75 percent of people who take family or medical leave each year do so for reasons other than maternity or paternity care. They take it to care for family members with serious illnesses, injuries or disabilities or for their own medical needs.

This federal bill draws on the models of successful state programs for paid family leave. Six states — California, New Jersey, Rhode Island, New York, Washington and Massachusetts — and Washington, D.C., now have such programs.

Research on the states that have pioneered these policies shows good results: They are financially sound and self-sustaining and benefit employers and workers alike.

Voters want a law like this. In a 2018 poll of registered voters, 84 percent responded that they would support a national paid family and medical leave law like the FAMILY Act.

When my dad passed away late last year, I needed time off work to care for him, and to say goodbye. In his final days and hours, during what normally would have been work days, I could be at his side without worrying about my job or financial security.

Congress and state lawmakers should pass sensible laws that enable all workers to care for their loved ones when they need it the most.