Caregiving, a new PBS documentary executive-produced by Bradley Cooper, reveals America’s caregiving crisis through expert insight and intimate stories – including the story of a couple facing FTD.

In the documentary, Malcoma Brown-Ekeogu of Georgia, who left her job to care fulltime for her husband Kenneth Ekeogu, is shown feeding and dressing him, as well as trying to secure badly needed Medicare coverage for extended hospice care.

“He deteriorated to the point where he needed hospice care. Finally, there was help,” she says in the documentary. “You can get lotion, razors, any type of continence supplies, as well as a home health aide that can come in and make it a little bit easier. But he will be released from hospice,” and all the hospice assistance will be gone, she said. She explains that the reason for his release was that “he’s not deteriorating fast enough.”

“I was told that because he’s been on hospice a year and a half and he hasn’t died, he doesn’t qualify for a humane way to leave this world,” she said. “I’m going to continue to fight for him. But without hospice help, I’ve got to figure that out by myself. It’s not going to be easy. It’s not going to be easy.”

Brown-Ekeogu was interviewed for a 2023 issue of the AFTD publication Partners in FTD Care newsletter

An estimated 43 million Americans provide unpaid assistance to a family member or another loved one; nearly three-quarters are 50 or older themselves, while more than 75% are women, according to the Family Caregiver Alliance.

In Paving the Path Forward, AFTD’s 2025-2028 Strategic Plan, the second of the organization’s four primary priorities is to “ensure that high-quality care and support are accessible to anyone affected by FTD at every stage of their journey.” Action items include:

• Serving more people with AFTD’s core support services
• Developing new ways to connect people with care and support
• Establishing AFTD as the central resource for tracking and disseminating emerging best practices for FTD care and support
• Advancing research to better understand and address factors that impede well-being for all touched by FTD