From the moment the care team stepped into the private home, they saw signs of dementia. “There were so many piles of papers,” says Quincy Samus, a Johns Hopkins behavioral gerontologist, “that the team [which includes a dementia care psychologist, nurse and occupational therapist] had difficulty finding a path into the living room.”
A team member had received a call from a distraught woman whose father, a retired lawyer recently diagnosed with dementia, refused to discard any papers, official or otherwise. Concerned about his escalating paranoia, the daughter, who lives out of town, called the Johns Hopkins program.
Called MIND (for maximizing independence) at Home, the comprehensive program assesses the needs of people with memory disorders living at home—and those of the family caregivers. It aims to keep patients at home longer, a preference for most of them, and to reduce unmet care needs, such as evaluation of home and personal safety, and management of neuropsychiatric issues.
Currently, about 35 million people worldwide have dementia, says Constantine Lyketsos, director of the Johns Hopkins Memory and Alzheimer’s Treatment Center, and that number, doubling every 20 years, is projected to reach 115 million by 2050. To help address what he calls “this staggering reality,” Lyketsos and Baltimore philanthropist Roy Hoffberger conceived MIND at Home, which debuted in 2012 as a $2.5 million privately funded pilot study.
Led by Samus and Lyketsos, the 18-month clinical trial included 303 participants, ages 70-plus, with dementia and mild cognitive impairment and 290 caregivers. A dementia care coordinator came into each home to address living and care issues before they could spiral out of control.
At least once a month, MIND at Home coordinators contacted households, checking on home safety, medical and mental health care, nutrition and food availability, as well as whether patients were participating in meaningful activities, like exercise or regular interaction with a friendly visitor. Based on needs, the program provided referrals to day programs, education, informal counseling and problem solving.
At 18 months, study participants who received these interventions were likely to remain at home—nearly two months longer than participants who received usual care. This gain extended to an average of about nine months when follow-up continued for up to 41 months. In other words, says Samus, “we were able to help people age in place, and without sacrificing their quality of life.”
“We don’t pretend we can keep people with dementia in their homes forever,” says Lyketsos, “but for much longer than expected—all because we can link those in need of care to appropriate resources and services.” Most contacts were phone-based, he notes, addressing problems like nutrition, which implies that benefits can be achieved in a cost-efficient way.
Though the study hasn’t calculated cost savings, Lyketsos says delaying admission to a nursing home or a rehab facility likely saves families thousands of dollars.
But the most satisfying outcomes, says Lyketsos, have been patients’ improved self-rated quality of life and the benefits to caregivers. The pilot study showed that the program over time freed up as much as 16 hours of caregiving time per week compared with control caregivers.
So successful was the trial, says Lyketsos, that its leaders were able to obtain $9.8 million in additional government funding to find a better and less costly way to keep dementia patients at home. Now he and his colleagues are working to package MIND at Home as an affordable commercial product tailored to diverse clinical, socioeconomic and racial populations.
In the former lawyer’s case, the team met with the family and enlisted the help of a professional organizer. “Over time,” says Samus, “we saw major changes.”
Whether it’s regulating the temperature at home, making sure the patient is groomed or sending a nurse to investigate a potential urinary tract infection, “there’s always something we can do to improve enjoyment of life” says Samus. “It’s been extremely rewarding.”