Families often struggle to balance work and Alzheimer's caregiving.
In workplaces throughout the country, millions of people carry the heartbreaking burden of trying to care for a loved one with Alzheimer's disease while keeping their jobs and families intact.
It's a problem that's growing exponentially. More than 5.5 million Americans are living with the disease, according to the Alzheimer's Association. That number is expected to climb to 16 million by 2050.
The association's 2017 Alzheimer's Disease Facts and Figures reports that six in 10 caregivers were employed in the past year while also providing help.
The cost borne by those volunteer caregivers is tremendous, both in terms of lost productivity and other problems, such as illnesses oftheir own brought on by the stress of caring for someone with a devastating, progressive disease.
“It's a huge burden to families. It's a long journey, with patients often living for more than a decade after their diagnosis,” says Vince McGrail, executive director and CEO of the Alzheimer's Association Central Ohio Chapter. “The emotional toll and stress are significant.”
According to the Facts and Figures report, among people who were employed in the last year while providing care to someone with Alzheimer's or other dementia:
• 15 percent quit their jobs or retired early because of care responsibilities.
• 57 percent reported sometimes needing to go to work late or leave early.
• 16 percent had to take a leave of absence from their jobs.
A number of employed caregivers also reported moving from full- to part-time work or cutting back their hours. Others said they turned down promotions or received warnings about attendance or performance.
Connie Gallaher knows the Alzheimer's journey well. Her father was in his mid-60s when he was diagnosed with the disease and died at age 80. “It was a long, grueling time,” says Gallaher, president of OhioHealth Home Care. As both a family caregiver and a healthcare executive, Gallaher recognizes the critical need for workplace support, particularly among the “sandwich generation” that has both parents and children who need their help.
One of the most challenging times for her was when her son was sick and unable to walk for almost a year. Trying to be in multiple places at once—both physically and mentally—was impossible. She realized that “work/life balance isn't always a reality.” Fortunately for Gallaher, representatives from OhioHealth's concierge service reached out and asked how they could help. The service handles everyday errands and other tasks for OhioHealth employees so they're pulled in fewer directions during the course of a workday.
Although not all corporations can offer such generous programs, there are other ways to assist, such as allowing associates to telecommute, use flextime or job-share.
Other options include providing a quiet space for associates to make phone calls, hosting educational lunch-hour programs and developing toolkits with information about important community resources.
Sometimes, Gallaher says, the most important thing is that employees know they're not alone and that someone cares. “It's the extra arm around the shoulder. ... You check in and maybe just send a note.”
Extending support and compassion is as good for business as it is for employees. With Alzheimer's and other dementias more prevalent, most employers will find themselves dealing with the issue one way or another.
“Competition for talent in the workforce is getting stiffer and stiffer,” Gallaher notes. “People have options about where they work.”
“It's not just about what's in the benefits handbook. It's the intangibles. Do you feel like you have people who are truly interested in your wellbeing?”
Charlotte Click, senior consultant and leadership development program manager at Cardinal Health, says she felt “100-percent supported” when she was helping her father through his illness.
Click used to travel from Dublin to the Pittsburgh area every other weekend. When her father moved to central Ohio, she spent time with him daily, working on her laptop at his bedside. She says Cardinal's culture fosters such flexibility.
“As long as you get the job done, you're given the benefit of the doubt.”
Click documented her work processes so the transition would be smooth if she needed to hand off a project.
In return for her employer's consideration, she says, “I have a tremendous amount of dedication to my company and will do whatever it takes.”
But McGrail says people sometimes are hesitant to approach employers about their struggles because of the stigma still attached to Alzheimer's. One report found two-thirds of caregivers feel that others react negatively to people with dementia.
“They feel uncomfortable sharing their story, and this can in turn hinder their ability to balance caregiving duties and work responsibilities,”McGrail says.
But that doesn't have to be the case, he adds. A corporation with a progressive caregiving policy can open the lines of communication and help employees do their jobs and care for their families simultaneously.
The Alzheimer's Association Central Ohio Chapter currently is working to build stronger corporate partnerships and foster outreach efforts. “The biggest thing is awareness,” McGrail says. “We want to reduce the number of people going through this alone.”
Alzheimer's and other dementias are still very much a mystery. Myriad questions remain as to what causes them and what might be done to prevent or treat them.
“In situations like this, knowledge is power,” McGrail says. “Someone with education can survive this much better.”
Laurie Loscocco is a freelance writer.