paid family leave, rochelle long

Dementia Caregiving & the Need For Paid Family Leave

By Alejandra O’Connell-Domenech | November 30th, 2021

The years Rochelle Long has spent caring for her mother and aunt with Alzheimer’s have transformed her into an advocate for Paid Family Leave. 

This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai. Image courtesy of Rochelle Long. 

Rochelle Long, from Shaker Heights, Ohio, has cared for her mother and her aunt ever since they were both diagnosed with Alzheimer’s roughly 15 years ago. With a history of the disease in the family, Rochelle took her mother, Shirley, to get tested for the illness roughly a year after her aunt, Nadia, was diagnosed with disease, making Shirley the fourth in the family to develop Alzheimer’s. 

Since then, Long’s life has turned into a constant balancing act as a full-time caregiver for her mother and a full-time executive assistant for the city of Cleveland. “It’s been a journey,” Long told Being Patient. “In the last 10-plus years, I’ve had one vacation,” she said during a virtual UsAgainstAlzheimer’s event last month. 

Long attributes her ability to care for her mother and work full-time to additional help from some family members — her granddaughter moved in with her to help watch Shirley when Long had work commitments — an understanding boss and the adult daycare center she sent her mother too. But last year, COVID-19 threw another variable into Long’s balancing act after the virus forced adult daycare centers across the country to shut down for health and safety reasons. 

As a result, for the last year and a half, Long has had to work remotely and tend to her mother 24 hours a day like thousands of other caregivers. And although the last 18 months have been a struggle, a new challenge lies ahead of Long now that she is going to return to the office since her mother’s former daycare is still not open. 

“As long as she is in the daycare program, I can work but when she can’t function in that I’m going to have a problem,” Long told Being Patient. “I don’t know if I am going to have to go part-time because I can’t afford not to work.” 

Like the 53 million other family caregivers in the United States, Long believes that paid family leave would be the solution to her problems, or at least an incredible help. Paid family leave does just what it sounds like, it provides employees with paid time off in order to bond with a new born baby or newly adopted or foster child, care for a family member with a serious health condition or to help family with spouse, domestic partner, child or parent that is deployed on active military duty. 

And given the increasing rates that people in the United States are developing Alzheimer’s and related dementias, more Americans are going to need to take on a caregiver role for a loved one at some point in their lifetime. More than six million Americans are living with Alzheimer’s at the moment and over 11 million people provide unpaid care to a family member with the disease and other dementias, according to the Alzheimer’s Association.

In addition, a recent survey from the Kaiser Family Foundation found that one in five Americans is receiving care from a family member. By the year 2050, the number of Americans 65 years old and up with Alzheimer’s could reach 12.7 million, according to the association. 

The need for paid family leave is particularly dire for caregivers of color who face greater health and economic disparities. 

As part of his American Families Plan, President Joe Biden originally proposed 12 weeks of paid family and medical leave in order to bump the United States off the list of the world’s six last remaining industrialized countries to not offer the protection. 

“No person should have to choose between a job and a paycheck for taking care of themselves or a loved one, a parent or a child,” Biden said when he announced the plan in April. After months of back and forth, the U.S. House of Representatives passed a bill including paid family leave shortly before Thanksgiving. But the future of of paid family leave remains up in the air.

Long agrees. Family members should have the option of caring for their loved ones if they wish to, she says, without being held back by an inability to take time off of work. “There is no better care that a loved one can get,” she said, “than care from someone who loves them.”

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