Image: Robert Ferrier films Jeff Borghoff in a clinical trial of the Alzheimer’s investigational therapy aducanumab. Image courtesy of Backfin Media.
SPENT, a short documentary, helps to shed light on the invisible toll — both human and financial — of dementia.
Those contending with a neurodegenerative disease — including caregivers — understand the feeling of being emotionally, physically and financially spent. The aptly named documentary, SPENT: The Hidden Cost of Dementia exposes the economic and emotional impact of this growing public health crisis on those living with dementia and their loved ones.
Emmy Award-winning husband and wife filmmakers Robert Ferrier and Daphne Glover channeled their first-hand experience with Glover’s mother’s vascular dementia diagnosis into a poignant film, providing guidance and context to the systemic failings of our healthcare system. Her mother’s health declined fairly rapidly, to the point where “one minute she was living on her own and the next minute she needed live-in help,” according to Glover. Her mother didn’t have long-term care insurance, so all the costs fell on their family.
Luckily, Glover’s family had resources to draw from, but she and Ferrier couldn’t help but wonder about the people contending with this disease who weren’t as fortunate: “No one really talks about the financial impact of this disease,” Ferrier told Being Patient. “We wanted to talk about that because it’s real and people are facing it. They’re not only struggling with the disease itself, but now they’re struggling with how to pay for it. It turns lives upside down.”
Image: Daphne Glover interviews Liddy Manson, director of AgingWell Hub at the Global Social Enterprise Initiative of Georgetown University. Image courtesy of Backfin Media.
There is no cure for dementia and long-term care generally isn’t covered by Medicare. The treatment of neurodegenerative diseases focuses solely on symptom management, keeping loved ones safe and caring for them as best they can. Out of pocket costs for caregiving, senior housing, adult day care, cost associated with lost wages and inability to save money are but a few factors that contribute to this extraordinarily expensive disease.
Researchers at Mount Sinai Hospital in New York discovered that the average cost of the last five years for a person with Alzheimer’s or other forms of dementia is around $287,000. That’s over $110,000 more than what it costs to care for someone with heart disease or cancer. Glover and Ferrier hope the film can help bring guidance and support to the 15 million unpaid American family caregivers looking after a loved one with dementia.
The filmmakers consciously kept their story’s duration short, just 30 minutes, as they wanted people to feel empowered, not drained, by the viewing experience. They weave in expert interviews alongside footage of families to create a film that is as personal as it is urgent.
The couple’s deep understanding of the disease is felt throughout, most intensely when the camera lingers on the person with dementia instead of cutting away when it becomes difficult to watch. This gives the viewer an honest portrayal of how Alzheimer’s impacts brain processes and what the individual struggles with on a daily basis.
Video: Being Patient spoke with Robert Ferrier and Daphne Glover, as well as former caregivers, about the financial burdens of dementia in a LiveTalk.
Your heart breaks alongside the wife of a man with Alzheimer’s, as she films her husband sobbing into his palms, unapologetically upset as he struggles to understand what is going on inside his brain. You walk down memory lane alongside her, as she revisits the decades of bliss with her husband through photographs and videos. This illuminates the stark difference between his mental and physical capabilities then versus today. Their vibrant, active marriage has been forever changed by this disease.
“We don’t want people to feel like they’re alone,” Glover said. “We want people to know where they can go for help.”
The couple is now working on the second iteration of the film — a companion piece featuring dementia experts, to help provide additional financial guidance.
As the film so profoundly says, “It’s impossible to put a dollar value on the gift of a healthy brain or the human cost of Alzheimer’s disease.” With that in mind, Glover aspires to remind their audience that “each and every one of these five million people suffering with Alzheimer’s is a person that people love. Know they’re still in there. They still exist.”
SPENT is now available to rent or buy on Vimeo.
Contact Genevieve Glass at email@example.com