Kamaria Moore-Hollis, 36, has been a caregiver for the past 13 years, for her father, then for her mother. Navigating a dementia diagnosis, she says, takes a community.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai. Image: Kamaria Moore-Hollis (left) and her mother Mary (right). Courtesy of Moore-Hollis.
Kamaria Moore-Hollis started her caregiving journey at only 23 years old, when her father was diagnosed with a brain tumor. Just five years after her father passed away, Moore-Hollis noticed changes in her mother, Mary — substantial weight loss, 150 pounds in about a year, along with short-term memory issues — that constituted a doctor’s visit.
At first, Moore-Hollis took Mary, who was then in her mid 50s, to see gastroenterologists. She had multiple X-rays and CT scans, but no one could find the cause of the dramatic weight loss. The pair then went on to see a neurologist, who first said it was a seizure disorder, then frontotemporal dementia. But Moore-Hollis they still had yet to solve the puzzle.
It wasn’t until they got in touch with the Alzheimer’s Association and Mary went to the Boston Center for Memory, where she received her final diagnosis: early-onset Alzheimer’s.
“It was just a lot. It seemed like nobody was really willing to say out loud: ‘This is the diagnosis. This is what you have,’” Moore-Hollis said. “It took a couple of years to actually get to that point.”
One in four caregivers are between the ages of 18 and 34, according to a study from the University of Southern California and UsAgainstAlzheimer’s, and one in six overall of those surveyed are caring for someone living with dementia.
As a young caregiver, Moore-Hollis was one of the lucky ones — she always had flexible jobs with bosses who were understanding of her situation. But of 235 millennials surveyed in the study, half said their career was affected, a third said they had to cut back on hours resulting in loss of benefits and employment in general, and 14 percent had to stop working entirely.
Once they received a diagnosis, Moore-Hollis said she went straight into “logistics and planning mode,” the same course of action she took when her dad was sick. The Alzheimer’s Association helped immensely, providing her with a list of things to do: become her mother’s healthcare proxy, power of attorney, try to get her into a day program, and join one of their many caregiving support groups.
The day program Mary attends, which she went to everyday prior to COVID-19, is a state-run program and is at no cost to Moore-Hollis and her family. The problem she faced, though, was still financial, as her mother was at an income level where she wasn’t poor enough to qualify for all the benefits, but wasn’t rich enough to pay out-of-pocket.
To figure out ways to make Mary eligible, Moore-Hollis worked with a case manager at Upham’s Corner Health Center to ensure Mary was at an appropriate, and low enough, income level.
Aside from her mother’s care, Moore-Hollis also had to take care of herself.
In her experience, support groups she tried were not only lacking racial diversity, but there was a huge economic disparity.
“I was often in groups where people could afford private care for their parents. Of course that comes with it’s own issues but that was not my experience so I didn’t have a lot of people to talk to and compare my experience with,” Moore-Hollis said.
Although Mary has been living with the disease for almost a decade, neurologists have not noticed any difference in her cognitive testing. Moore-Hollis said doctors tell her it is unique, and while she notices that her mother is more forgetful and a little bit more emotional, it is not in the way that she expected.
“It’s like she had this precipitous drop, and has been stable ever since,” Moore-Hollis said.
Twenty-two percent of African Americans are reluctant to join clinical trials in fear of being mistreated, and 24 percent are untrusting of medical research, according to the 2021 Alzheimer’s Disease, Facts and Figures special report on race, ethnicity and Alzheimer’s in America.
As a woman of color, Moore-Hollis said she has felt the burden of responsibility to bring awareness to issues like Alzheimer’s and to become involved in studies and support groups in her community. She feels like she is making up for a lack of help from the healthcare system. “The healthcare space has a lot of work to do when it comes to education and advocacy, when it comes to reaching out about the studies that they do, and reaching out to different communities, more diverse communities,” she said.
And the arbiters of that system have a lot of ground to gain, as mistrust in the Black community is disproportionately a barrier to seeking out care, much less becoming involved in cognitive health research.
Moore-Hollis has sensed this mistrust in her own community, and said with that, a lack of awareness about how many others are in the same boat, and a reluctance to ask for help. “When we notice things are wrong, we don’t actively seek support,” she said. “If you’re going through something, chances are somebody who knows somebody you know is going through it.”
Moore-Hollis has mourned losing the person her mother was, but in the course of her journey, other family members have stepped in to look after Mary as well. Her cousins, with whom her mother now lives in a separate unit in their multi-family apartment, have helped to keep Mary socially active, bringing her to church and otherwise getting her out and about; “They’ve definitely been instrumental in the caregiving course,” Moore-Hollis said.
Without her cousins though, she said doesn’t know if she would be a successful caregiver. All in all, she believes caregiving takes a village, and she is now working to encourage other caregivers and loved ones of those living with dementia to reach out for help as much as they can.
“Allow yourself to feel whatever comes up, because it’s a really frustrating and sad process, and we’re not superheroes,” she said. “I think we have an expectation that we’re supposed to be happy all the time, and caring for our loved ones while caring for ourselves, and you can’t do it all — so just recognize when you need help — and when it comes along, take it.”