July 23, 2012

Johns Hopkins program enables those with dementia to ‘age in place’

A Johns Hopkins research program that brought resources and counselors to elderly Baltimore residents with memory disorders such as dementia significantly increased the chance they could continue to live successfully at home, a preference for most of them.

As part of the 18-month Maximizing Independence at Home (MIND) trial, a dementia care coordinator came into the homes of the elderly patients to address a variety of living and care issues before they spiraled out of control and required the patients to be hospitalized or moved to a long-term-care facility, program coordinators said.

“The project demonstrated we were able to help people age in place without sacrificing their quality of life,” said study leader Quincy Miles Samus, an assistant professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine, who presented the findings July 18 at the Alzheimer’s Association International Conference 2012 in Vancouver. Constantine G. Lyketsos is the study’s senior investigator, and Deirdre Johnston is the study’s intervention team leader.

“Elderly people typically prefer to remain at home, and this program increased the likelihood they could,” Samus said. “We hope this study can help guide how community-based dementia care can be effectively and efficiently delivered as the population continues to age.”

Samus says that stay-at-home living for dementia patients also is likely to be a cost-effective move. Although her preliminary research didn’t crunch the numbers, she says that when people leave home, they often head to the hospital, a rehabilitation facility, a nursing home or an assisted-living facility—all more expensive options than home.

People with dementia, a growing segment of the population, suffer from memory impairment and difficulty thinking, which affect their daily lives and ability to care for themselves. They are at risk for physical disability, additional medical and mental health impairments, and placement in a long-term-care facility. There are no cures for dementia.

The trial program included 303 people 70 years and older with memory disorders, primarily dementia and mild cognitive impairment, with 110 of them receiving the home visit and care coordination intervention. Each of the 110 was assigned a dementia care coordinator who oversaw progress and conducted a comprehensive assessment of needs, including whether or not a patient had a proper diagnosis, appropriate medications, behavior problems, untreated medical disorders such as high blood pressure, and hearing or vision concerns.

The coordinators checked for home safety, nutrition and food availability and whether patients participated in meaningful activities beyond watching television. They also assessed personal safety issues, such as the ability to drive a car or the risk that the person might wander off. They identified existing community resources to address any unmet needs.

The program also provided education about dementia and memory problems to caregivers and patients, as well as informal counseling and problem solving. Legal issues such as advance directives and wills were discussed. The coordinators contacted the patients’ families at least once a month, and more frequently if necessary.

At the beginning of the study, the researchers found a wide range of unmet needs. Home and personal safety issues affected 90 percent of the study population. Some 65 percent were in need of general medical care, 52 percent had a lack of meaningful activities, and 48 percent needed legal/advance care planning.

At the end of the trial period, the researchers found that patients who met regularly with the dementia care coordinator were significantly less likely to leave their homes or die than those in the control group (30 percent vs. 45.6 percent) and were able to remain in their homes significantly longer. The study group had more of their needs met relative to the control group, most significantly in areas of safety and legal issues.

The dementia care coordinators were paraprofessionals without specific prior training in caring for people with memory disorders, suggesting that coordinator skills can be acquired with relative ease. They received four weeks of intensive training, including lectures and observation of dementia patients in a clinical setting. They were supported by a nurse and a physician and met weekly to discuss cases.

Samus says that the results suggest wider application of the home care model should be evaluated in the future.

The study was funded by grants from THE ASSOCIATED: Jewish Community Federation of Baltimore, LeRoy Hoffberger, The Harry and Jeanette Weinberg Foundation, The Hoffberger Foundation, The Hoffberger Family Fund, the Leonard and Helen R. Stulman Charitable Foundation, the David and Barbara B. Hirschhorn Foundation, the Lois and Irving Blum Foundation, Leonor and Marc Blum, the Joseph and Harvey Meyerhoff Family Charitable Funds, The Henry and Ruth Blaustein Rosenberg Foundation, the Baltimore County Department of Aging, Lois Blum Feinblatt, the National Institute of Mental Health and the National Institute on Aging.

Other Johns Hopkins researchers involved in the study are Betty Black, Christopher Lyman, Amrita Vavilikolanu, Malory Wechsler, Jane Pollutra and Peter V. Rabins.