When Jennifer N. Levin’s father was diagnosed with progressive supranuclear palsy, she was only 32 and living across the country, working long hours at her job in the television industry. Nevertheless, as an only child with her father long divorced, she became his long-distance caregiver.

“I was at an age where I was still building my identity,” Levin, now 44, told Next Avenue, an online publication produced by Twin Cities PBS. “I wasn’t married, I didn’t have children, and I didn’t expect that at this stage of my life, I’d be dealing with a parent with a chronic illness.”

“I didn’t know anyone my age dealing with the issues that I was facing,” Levin said. “I felt unprepared for the responsibility. I also felt disconnected from my peers, believing no one my age could help or understand what I was going through.”

She was not alone. When Levin became a caregiver in 2018, 10 million of her fellow millennials were taking on similar roles, according to an AARP survey. That was about one in every four people born between 1981 and 1996.

Among the reasons she cited: People living longer with illness, the impact of COVID, and a professional home care shortage. To draw attention to this trend, she wrote a book, “Generation Care: The New Culture of Caregiving, With Advice and Support For Those Living It,” published this past April.

Levin was unprepared for the personal pressures of her new role. Instead of seeking support from her friend group, she assumed her situation was rare and unrelatable. “It felt better to have my friends as a place to go and take a break from the mental load.”

She did join an online message board, and found the information and logistical support so helpful that she started her own online community, one specifically targeted to her age cohort.

Additional Resources for Young Adult Caregivers

AFTD offers several virtual support groups for younger adults. On Facebook, AFTD moderates a young adult group for people in their 20s and 30s who have a family member or loved one with FTD.  As a closed group, it cannot be found by searching on Facebook. To learn how to join, send a message to youngadults@theaftd.org and include the email address associated with your Facebook account.

AFTD also offers two Zoom-based support groups:

Young Adults with a Parent Diagnosed with FTD I (ages 24-40)

Meets: 3rd Monday of the month, starting at 7 p.m. ET

Phone: 212-305-7382

Email: tg4aftd@gmail.com

Young Adults with a Parent Diagnosed with FTD II (ages 17-26)

Meets: 4th Tuesday of the month, starting at 8 p.m. ET

Phone: 866-507-7222

Email: info@theaftd.org

Information about other FTD support groups is available on AFTD’s website.