Since Diane’s husband received a dementia diagnosis in early 2014, at age 50, their family of four has been taking things slowly.
The bouts of memory loss and confusion that characterize the disease have grown more common, pushing him to leave his full-time job as a mechanical engineer, where trying to recall information on command proved too stressful. He now spends his time mountain biking, seeing loved ones and helping around the house.
“What we really focus on is now,” said Diane, who requested that her last name and her husband’s first and last names not be used. “It takes the pressure off having to remember things. And with that pressure taken off, he actually does remember things.”
That’s a useful lesson for people living with dementia, who must grapple with deteriorating memory, concentration, social behavior and other basic functions in their daily lives. In November, Diane and her husband sought to deepen that concentration on the present by joining a Bay Area-based clinical study assigning them to care for horses.
By grooming, walking and petting the animals, the couple learned to tune into the horses’ evolving moods and needs. They also learned the intrinsic value of caring for another – a virtue that people can lose sight of in the day-to-day stress of taking care of someone with a degenerative illness.
Not being able to remember things that were once familiar can be frightening, especially for people in their 40s with early onset dementia, said Nancy Schier Anzelmo, a gerontology professor at California State University, Sacramento. As people lose the ability to recall information or perform certain tasks, they may become depressed and anti-social.
“If someone’s on that trajectory, they become more isolated,” Schier Anzelmo said. “They might forget they’re meeting their friends for coffee, and the friends stop calling because they get annoyed. The person living with the disease needs to feel empowered – not that this is a downward trajectory, but that they still have purpose and focus. Maybe that means doing something they never tried before.”
Schier Anzelmo and senior living consultant Paula Hertel helped found the Connected Horse Research Study, a collaboration between Stanford University and the nonprofit group Connected Horse, which was founded to raise money for the study. The goal is to build confidence in people with dementia and improve relationships between them and the loved ones caring for them.
The person living with dementia gets to see what it feels like to care for another being, and a loved one gets a better understanding of the importance of providing care, Hertel said.
“It’s a nonjudgmental, mutual respect with the horses,” Hertel said. “When care partners learn to break down those dynamics for themselves, they also start to become better care partners.”
Hertel and Schier Anzelmo, both longtime equestrians and dementia care experts, brought the idea of an equine engagement program to the Stanford Red Barn Leadership Program and raised more than $20,000 in contributions from colleagues, horse enthusiasts and the California Associated Living Association to fund the research. Phase 2 of the study begins May 17 and is recruiting new participants.
People with early onset dementia usually receive less attention and services than older, more advanced sufferers, experts said. Alzheimer’s disease, the most common form of dementia, affects one in nine people over age 65. By 2050, the number of people with Alzheimer’s may nearly triple, from 5.2 million to a projected 13.8 million, according to 2016 data from the Alzheimer’s Association.
“As people are getting diagnosed earlier, they’re still independent,” Hertel said. “There’s this period of time where they wonder where they fit in. Their life as they knew it before is shifting, but they don’t want to lose quality of life. This program focuses on the relationship aspect (with caregivers), to help them grow together so they don’t feel so hopeless.”
Horses are known for perceiving and mirroring human emotion. Both caregivers and people with dementia must stay calm to earn the horse’s trust and get the horse to respond to commands. By the end of the program, participants are able to walk with a horse, brush it and clean its hooves without resistance, Schier Anzelmo said.
A report from the first phase, with 10 participants, found that people were more energized and showed more positive facial expressions by the end of the workshops. Facilitators noted that participants with dementia were also better able to follow instructions and social cues than they were at the start.
Just being in a supportive environment makes a huge difference for people with early onset dementia, who may feel socially anxious because they’re trying to cover up memory deficits, Schier Anzelmo said.
Diane, whose husband had not worked with horses before, said he was nervous at first but gradually let his guard down and was happily nuzzling the animals by the third day.
“The horses are pure present,” said Diane, a Los Gatos resident. “They don’t worry about who they’re going to see the next day or what everyone else is working on. They play when they are playful, they sleep when they’re tired, they eat when they’re hungry. They’re incredible teachers in how to be.”
No one in the group asked questions about his condition or pressured him to recall information about himself, which let him relax, Diane said. Research has shown that people can remember better when cortisol levels created by stress are low.
“What I observed was a level of acceptance and a level of hope,” Diane said. “(The diagnosis) doesn’t mean it’s going to be awful. There was hope that there still could be love and companionship and ways to share experiences that were fulfilling.”
If results from the next phase of the Connected Horse study are positive, Hertel and Schier Anzelmo will try to institute the program beyond Northern California.
“We want to keep people feeling hopeful and optimistic, so that as they move through the disease they can still feel like a whole person,” Hertel said. “But it can’t be done in a silo. This program brings people together. Our roles will change over time, how we do things may change over time, but the work on communication will make it all better.”
Connected Horse research study - phase two
When: May 17, 24, 31
Where: Stanford Red Barn, 100 Electioneer Road, Stanford
To participate, call 650-498-5903.
Participants must be under age 75 and accompanied by a caregiver to enroll in the study.