As the workforce ages, now is the time to normalize dementia care

When Barbara Huelat found herself as a caregiver to her husband as he struggled with dementia, a supportive workplace was a lifesaver on the hardest of days. 

"I had a caregiver for my husband when I went to the office, but one day they showed up drunk," she says. "What are you going to do? I brought my husband with me into the office and found things for him to do." 

Huelat, an author and designer of healthcare spaces, says stigma around dementia makes support and resources a challenge for caregivers, who are already struggling with the emotional toll these conditions have on their family members. Today, it's estimated that nearly 14% of people over the age of 71 have dementia, and almost 10% have Alzheimer's disease, according to the National Institutes of Health. Both conditions progressively impact the brain and memory, eventually affecting speech, mood and other behaviors. 

"Their loved one is really falling apart in ways — not physically, but mentally and emotionally, and they don't understand, 'Why is mom doing these things?'" Huelat says. "There seems to be a stigma about it, equating it with mental illness. And yet it's a major part of our culture. We're going to continue to see the numbers grow as our population ages." 

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People with dementia typically aren't in pain or are even aware of their mental deterioration, leaving caregivers to shoulder these burdens on their own, Huelat says. This grief, frustration and confusion is still misunderstood by society. 

"It's not like other physical ailments, where there's a diagnosis and there's a protocol for treatment," Huelat says. "Finding care is very difficult, and when you're caring for an adult who is not being hospitalized, it is something that our culture has not accepted yet." 

Research from Harvard Business School estimates that 73% of employees have some sort of caregiving responsibility. While employers have instituted some benefits, like flexible work schedules and stipends for care, many of these programs are targeted toward working parents, leaving a large demographic of caregivers' needs unaddressed, Huelat says. Yet the experiences can be quite similar. 

"I've had employees that couldn't find caregiving for their child and they bring them into the office and find video games or coloring books, and that can be good for the person with dementia, too," Huelet says. "In many ways, the caregiving is the same, but it's not accepted in the same way." 

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Employers can support these efforts by providing access to education and support groups for caregivers — Huelat recommends Dementia Friendly America as a good resource to find training and education. Benefits like adult daycares can also help caregivers juggle the demands of work with caring for their loved one. 

"People with dementia really do like to get out and interact with people. They may say things that repeat the same story over and over again, but in many ways they can interact with people in a very positive way," Huelat says. "Employers that help find networks and support groups would be a wonderful benefit to their employees." 

Supporting employee caregivers, no matter the age of the person they're caring for, is a critical component of creating an empathetic workplace. 

"I think finding the resources was one of the biggest issues I ran across," she says. "Caregiving is very hard and very stressful. Being mindful of that chronic stress is very important to making this a normal part of our world."