Among the most successful approaches to helping caregivers is the New York University Caregiver Intervention (NYUCI), designed to support people tending to loved ones with dementia. The program was based on work in the late 1990s by N.Y.U. psychiatric epidemiologist Mary S. Mittelman. A key measure of its efficacy is the fact that caregivers in the program are able to successfully tend to their loved ones at home far longer than nonparticipants, delaying the need for institutionalization. Positive results from NYUCI have now been found in interventions in five states.
University of Minnesota gerontologist Joseph Gaugler and his colleagues have adapted NYUCI for adult children caring for parents. In 2013 they reported that just 37 percent of the adult-child caregivers who participated placed their parent in a facility versus 66 percent in the control group. Caregivers also reported better quality of life, reduced depressive symptoms and less stress in response to disruptive behaviors.
NYUCI is a multipronged program that includes referrals to support groups and mindfulness programs. The chief component is a series of individual and family therapy sessions targeted at problematic psychological dynamics within the caregiver and among family members. In addition to regularly scheduled sessions, participants can reach out for ad hoc counseling by telephone whenever they need it, whether Dad with dementia is screaming through the hallways at night or the caregiver’s brother is accusing his beset sister of trying to “put Mom away.” Across cultures, family dissension has long been shown to increase caregiver strain. A classic 1993 study found that for married caregiving daughters, siblings were both sources of support and stress. And a 2014 study of 90 dementia caregivers in Colombia found that negative family dynamics were significantly associated with caregiver depression and stress.
Sheryl Fairbanks, 65, of Roseville, Minn., participated in Gaugler’s intervention in 2009. “I was caring 24/7 for four parents [her own and her husband’s] in three houses with an assortment of ailments, including my mother’s vascular dementia,” she recalls. Fairbanks had recently left a long career as a successful IT executive. Her sister, she says briefly, was “not available” for caregiving or to attend family therapy sessions. Fairbanks’s husband was her primary helper.
As part of the program, Fairbanks met for 90 minutes a month with family therapist Mark Reese, either at her home or at a nearby coffee shop. Reese helped her through diverse practical and emotional struggles over a period of 18 months. “Mark saved my life,” she says of the experience that ended in May 2012, when the last parent died. Reese rescued her from depression, she says, by helping her see the big picture and find meaning and pride in her situation.
The success of this program has led, this past July, to the creation of N.Y.U.’s Alzheimer’s Disease and Related Dementias Family Support Program, based in New York City. The state-funded program offers free counseling to caregivers in the area either in person, by videoconferencing or by telephone, depending on the caregiver’s preference. Mittelman is currently recruiting caregivers from across the country to participate in a study to determine if the videoconferencing version can match the results of the original, in-person program. (For online information, go to http://bit.ly/NYU2c2g8.) If the remote intervention succeeds, it could reach many more people in need of support.