How one Philadelphia medical student is learning to be a young caregiver to a parent with dementia

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Hannah Clarke reached into her backpack to pull out two employee ID badges for Jefferson Einstein Hospital in Philadelphia.

One has her name and picture on it. The other, worn and slightly faded, has the name and picture of her mother, Dr. Claudine Clarke, who is no longer practicing.

“I found this in her things when my brother and I were moving her out of her home, and I kept it because it’s very special to me,” Clarke said. “As I’m going around the halls in the hospital, I’m like, oh my goodness, she was literally doing rounds on these same floors.”

Following in her mother’s footsteps, Clarke is pursuing a career as a physician. She’s currently a third-year medical student at Thomas Jefferson University’s Sidney Kimmel Medical College.

As a child, Clarke said she remembers hearing stories about her mother’s work in geriatric medicine and meeting some of her elderly patients.

Clarke described her mom, who immigrated to the United States from the Bahamas many years ago, as an extremely intelligent woman who had a gift with words.

“I mean, it was impossible to beat her at Scrabble,” Clarke said. “She would play Scrabble every night and her friends would be like, ‘Claudine, you’re still playing Scrabble?!’ And she’d be like, ‘It’s so I don’t get dementia when I’m older.’ She’d say that. And now I look back and I’m like, oh my gosh, the universe is so cruel.”

Cruel because at 56 years old, Claudine was diagnosed with frontotemporal dementia, a rare progressive brain disorder that primarily affects behavior, personality, language and communication. It strikes people earlier than other forms of dementia, with symptoms typically beginning before the age of 65.

That suddenly left Clarke and her brother, both only in their 20s, as the sole caregivers for their mother.

“This is a profoundly emotional experience,” Clarke said. “You’re slowly watching someone you love deteriorate and that is just gut-wrenching.”

Millions of Americans are unpaid caregivers for a loved one with dementia and other conditions. It’s rewarding, but often very demanding work, especially for people juggling full-time jobs and other responsibilities.

It can be uniquely challenging for young adults who unexpectedly become caregivers at a time when most of their peers are preoccupied with college, first jobs, dating, travel and exploring. Clarke said it’s become important to connect with others who are navigating the same situation.

“We are young, we are 20-somethings, our parents are different than who they were when they raised us and now, we’re taking care of them,” Clarke said. “There’s a certain solidarity we can all have.”

Previous research has found that about one in six millennial caregivers were caring for someone with Alzheimer’s disease or another form of dementia. Experts expect that number to grow as more people in the Gen X and Baby Boomer generations age.

Leading up to an official diagnosis, Clarke said she and her brother suspected there was something wrong with their mother. She started mismanaging her money and making extravagant purchases, and she began stumbling over her words.

“That moment started a grief process that was not just the grief in that moment … but the grief of the previous two years of changes all catching up to me,” Clarke said. “Like, I actually have to grieve all those versions of my mom, because that’s never coming back.”

After helping their mother sell her house, Clarke and her brother took turns having Claudine live with them — her brother and his wife in Philadelphia and Clarke in Ohio, where she shared an apartment with roommates for the first two years of medical school at Case Western Reserve University.

Clarke said at times, it was complicated and stressful and a far departure from the experience of her classmates, but she said she looks back on those two years fondly, “because I got to spend time with my mom, which was all I wanted.”

But as their mother’s disease progressed further, she went to live in a nursing home in Philadelphia. That was when Hannah decided to transfer medical schools — no small feat — to be closer to home.

Clarke and her brother share caregiving responsibilities, with him taking on the legal, financial and health insurance aspects of Claudine’s care, and Clarke having a “boots on the ground” role.

When she’s not doing clinical rounds and studying for her program at Jefferson, Clarke is with her mother about 10 to 20 hours a week, “making sure her laundry is done, making sure her hygiene is taken care of, all those sorts of things.”

Claudine, once a wordsmith, has since lost most of her ability to formulate sentences and verbally communicate. But she can still sing, a quirk of her type of dementia.

Clarke started recording her mother, especially when she goes into a rendition of one of her favorite songs, Bob Marley’s “Redemption Song.”

“She’s not able to talk and converse, but it’s her way of showing, ‘Hey, I can still interact with you in my own unique way,’” Clarke said.

In between these lighthearted moments and daily routine, Clarke said there is an ever-present feeling of grief as she and her brother figure out how to be young caregivers.

“There are so many things I haven’t been able to do to take care of my mom just because I’m in school, I don’t have an income,” Clarke said. “My brother, too. This has been his whole post-college life.”

It’s been tough to find resources and programs specifically geared toward young-adult caregivers, Clarke said, but she’s been able to connect with others at national conferences and online for support.

They also have to figure out how to plan for a future for themselves even as the next few years of their mother’s life still feel so uncertain, Clarke said. Her mother’s diagnosis has changed the way Clarke wants to live her life.

“I’m going to live my life with an intentionality that maybe I wouldn’t have had before,” she said. “I am not going to spend a whole lot of time in spaces or doing things that I don’t necessarily want to do long-term.”

Clarke said she doesn’t know what exact twists and turns her mother’s disease will take next, or how her medical career will turn out. But she said being here and creating moments with her mother will always be a gift.