Watch: For millennial caregivers, becoming the ‘parent for a parent’ with Alzheimer’s comes with agonizing challenges

WEYMOUTH, Mass. — Kamaria Moore-Hollis hadn’t even turned 30 when her mother, Mary, was diagnosed with early-onset Alzheimer’s disease. She hadn’t yet started her job in social services for the state, or gotten married, or bought her house — all milestones she would mark after she became a caregiver.

“I grieved her loss probably five years ago,” Moore-Hollis, now 34, said. “I don’t have an adult relationship with my mother. I can’t talk about frustrations at work or marriage or you know, just things that happen when you grow up.”

Instead, she was thrown into the deep end of caregiving at an exceptionally young age — navigating the complexities of insurance coverage; filing piles of paperwork and making seemingly endless phone calls; and hunting for day programs and doctors that could care for her mother.

Now, she counts herself among the growing number of young people who have become caregivers for loved ones with dementia, a group that is likely to expand as the prevalence of the condition climbs. While millennial caregivers face all the same ups and downs as their older peers, they’re also at a point in their lives that can compound the challenges of caregiving. They’re often in less financially stable situations, trying to launch their careers or even start college.

“This is a destabilizing disease for all communities, but has acute challenges for millennials and particularly millennials of color,” said Jason Resendez, the executive director of the Latino coalition of the nonprofit UsAgainstAlzheimer’s.

In 2017, UsAgainstAlzheimer’s looked at data from 235 millennial caregivers who participated in a broader survey of caregivers in the U.S. Their responsibilities took a dramatic toll: One-third of millennial dementia caregivers said their responsibilities severely impacted their work. Some were fired or forced to cut back their hours. Nearly 80% of young caregivers said it was very difficult to access outside help they could afford.

Like the vast majority of millennial dementia caregivers in the survey, Moore-Hollis doesn’t live in the same home as her mother. She lives about half an hour away from the multifamily home where Mary lives in her own apartment, with other family members right upstairs. Her niece lives down the street.

They’re the ones who help keep Mary busy. They take her to church or out to lunch, chatting with her even when the conversation feels like it’s running in circles. That’s the part of caregiving Moore-Hollis struggles with the most.

“If have to make a health care decision or if I have to pay a bill or if I have to do stuff for the day program, that stuff, that’s what I’m great at,” she said. “It’s the socializing and the emotional part of it that I am not so great at.”

Resendez said that’s common among caregivers, particularly those who have to start taking care of their own parents at a young age.

“There’s a role reversal there that causes emotional distress. You’re filling in the role of a parent, for a parent,” he said. Nearly 80% of millennial dementia caregivers in the UsAgainstAlzheimer’s report say their role is emotionally taxing — and that they want more help dealing with that. But there are relatively few resources designed with young caregivers and their needs in mind.

“There are very, very few resources tailored to younger caregivers,” Resendez said.

And even those resources that are designed for young people aren’t always helpful. At one point, Moore-Hollis went to a support group for young caregivers in the Boston area, recommended to her by the Alzheimer’s Association.

But it didn’t do much to make her feel supported — if anything, it only made her feel more isolated. She was the only person of color in the group. And Moore-Hollis and her mother weren’t in the same income bracket as the rest of the group’s members, she said. They often talked about experiences such as coordinating in-home care — something Moore-Hollis and her mother couldn’t afford.

She also felt a nagging sense of guilt when she talked about her own experiences with caregiving in the group. Moore-Hollis gets easily frustrated with Mary, which sometimes upsets her mother — and in turn, makes Moore-Hollis feel bad for becoming frustrated in the first place.

Other caregivers in the group, she said, were often singularly focused on being positive. She knows it’s an attitude that’s helpful for many caregivers to have — but it’s just not how she feels.

“Of course, I love my mother,” she said. “But would I rather not be in this situation? Yes.”