In a state hospital geriatric unit, a Holocaust survivor with dementia repeatedly gets out of his wheelchair without warning and falls to the floor. To avoid restraining the man, which would further agitate him and curtail his sense of control, a nurse has a simple, ingenious idea of how to signal the staff that he is about to rise: She gives him a doll to hold. Now, before he gets up, he calls for someone to take the “baby.” The staff takes the doll and comforts him, preventing him from falling.
The nurse’s insight into keeping this man safe is an example of person-centered, trauma-informed (PCTI) care, an approach that uses knowledge about trauma – including the need to create a safe, empowering environment – to promote the well-being of trauma survivors.
“We’re bringing to light the impact of aging with a history of trauma,” says Shelley Rood Wernick, Shelley Rood Wernick, Managing Director of The Center on Holocaust Survivor Care, part of the Jewish Federations’ Institute on Aging and Trauma. The approach, she added, has the potential to revolutionize the way older people are cared for.
The Jewish Federations first defined PCTI through its communal work with Holocaust survivors, whose childhood traumas can make aging more complicated. “People with dementia frequently have trouble separating past from present, Wernick said. “If your past was really scary, your present could be really scary too. We need to restore that sense of safety.”
“Trauma lives in the body”
A partnership between JFNA and the U.S. Administration for Community Living allowed Jewish Federations and human service agencies to develop PCTI innovations for Holocaust survivors in hundreds of initiatives across 21 states. But over time, they found that PCTI had applications for other trauma survivors as well, and they expanded training to a variety of communities that have faced trauma. Research suggests that between 70-90% of older adults have experienced a traumatic event, meaning that the PCTI approach could be transformative.
“If an older adult is unable to acknowledge their traumas and associated distress, they are at risk of suffering in isolation, not getting their needs met, or receiving inadequate care,” claims Dr. Joan Cook, a professor of psychiatry at the Yale School of Medicine who has worked for decades with former prisoners of war, survivors of the 9-11 attack on the World Trade Center, and survivors of sexual assault.
Difficult behavior in an older person may be a response to earlier trauma. By recognizing this connection, caregivers can minimize the sights, sounds, or events that may make a person feel agitated or anxious.
Dr. Joan Gillece, from the National Association of State Mental Health Program Directors Services, says trauma “lives in the body. It comes back more as a response or reaction than it does as a memory.” She recalled one Holocaust survivor who became extremely anxious when a therapist walked into her apartment because her black boots subconsciously reminded the survivor of Nazi soldiers. Another survivor had a response to curtains made of yellow fabric reminiscent of the yellow star that Jews were forced to wear during the Holocaust.
“These seemingly innocuous actions took them right back to Nazi Germany,” says Gillece. “We need to not just put out the fire, but we need to find out what caused it, which is difficult, because they can’t tell you where their behavior is coming from.” First and foremost, she insists, the approach requires giving people agency and choice, dignity and respect. It requires an understanding that unusual behaviors stem from pain rather than attention-getting or manipulation, and often are a form of relief-seeking.
A new approach to dementia
“Dementia makes people revert to their childhood years and earliest childhood memories,” explains Briana Hilfer, Caring Department Planning Executive at UJA-Federation of New York, who works with a range of populations, including Holocaust survivors and people with dementia who identify as LGBTQ.
Holocaust survivors can be retraumatized by anything from a dog barking to being told to go left or right. During the pandemic, which was particularly challenging for Holocaust survivors, JFNA grants helped provide them with tablets and computer training to participate in educational programs, communicate with friends and family, and attend virtual concerts of music from their childhoods. “They’ve been locked up in their homes and unable to go into schools to tell their story, which was a lifeline for many,” Hilfer said.
The approach is particularly important because individuals diagnosed with PTSD may have an increased risk of developing dementia, according to Dr. Elissa McCarthy of the National Center for PTSD. Black Americans are twice as likely to develop Alzheimer’s as white Americans, due in part to stressful life events and the impact these events have on the brain, according to the Alzheimer’s Foundation of America’s Jennifer Reeder.
When people develop dementia, “they can become suspicious, stand-offish, or even a little aggressive,” notes Dr. Gary Kennedy, a geriatric psychiatrist at Montefiore Medical Center in the Bronx who works with Holocaust survivors in programs funded by the UJA-Federation of New York. “Family members often believe that they’re doing it willfully, but typically it’s a reflection of past experiences that were traumatic – and trauma is, unfortunately, far more pervasive than we ever realized.” The key, Kennedy said, is to treat patients with dignity. “If you treat them like a child, they’ll respond like a child.”
Andrea Korsunsky, director of the Center for Dementia Care at Jewish Family and Children’s Services in San Francisco, says the PCTI approach is a “universal precaution, like washing your hands to prevent bacterial infection.” She points out that the program, which received a grant from JFNA to help Holocaust survivors with dementia who are from Russia and other Eastern European countries, found the need to educate both paid caregivers and family members on how to navigate the complex changes in mood and behavior that often accompany dementia.
“You have to change everything in how you communicate,” Korsunsky says. “Families are faced every moment with what their loved ones can no longer do, and you need to encourage them to focus not on those deficits, but on their strengths and abilities, and on joyful moments that can still be shared.”
Wernick wants increased government and private funding to change the culture of aging services to allow Jewish Federations and their grantees to continue to raise awareness, lead trainings, and spearhead innovative services that emphasize a PCTI approach.
The costs of incorporating the approach, she adds, don’t have to be high. For example, a meal program can easily be adapted for people who have gone hungry in the past. Instead of a buffet, which might lead those in the back of the line to worry there may not be enough food left, meals should be plated. Adding plastic bags on the tables could signal that there is an abundance of food they are welcome to take home. “Any program can be made more PCTI,” she asserts.
For more information about Jewish Federations of North America, visit the website