Experimental care program keeps people with dementia at home longer, study shows

February 10, 2014, Johns Hopkins University School of Medicine

An 18-month pilot program that brought resources and counselors to elderly Baltimore residents with dementia and other memory disorders significantly increased the length of time they lived successfully at home, according to Johns Hopkins researchers. Staying at home was a clear preference for most of those who participated in the study.

"The project demonstrated that we were able to help such people age in place without sacrificing their quality of life," says study leader Quincy Miles Samus, Ph.D., an assistant professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine.

The trial, known as Maximizing Independence (MIND) at Home, involved 303 people 70 years and older with memory disorders, primarily and mild cognitive impairment. One hundred and ten of them received an in-home visit from a memory care coordinator and nurse that assessed a range of care needs including diagnosis of memory problems, review of medications, behavior problems, daily activities, and untreated medical problems such as hearing or vision problems, and high blood pressure or diabetes. The care team then developed a personalized care plan and worked with the family over time to oversee progress and attend to new needs that arose.

The goal was to see if a coordination model that incorporated evidence-supported care practices could delay or prevent the need to move from home to other settings like nursing homes or assisted living facilities.

In a report published online last week in The American Journal of Geriatric Psychology, the Johns Hopkins investigators say that those who got 18 months of care coordination with home visits were able to safely stay in their homes a median of 288 extra days, or around 9.5 months over a median follow-up period of about 2 years. "This can make a huge difference in terms of comfort, money and quality of life for those involved," says Samus.

The researchers found that participants who met regularly with coordinators were significantly less likely to leave their homes or die than those in the control group (30 percent versus 45.6 percent). Also, they had fewer unmet care needs, particularly for safety and legal/advance care issues, and had improved quality of life. People with dementia, a growing segment of the population, not only suffer from memory impairment but also have difficulty with daily living tasks and with the ability to safely care for themselves or manage other health issues. Because insurance does not always cover non-medical needs and coordinator services, Samus says her team's research was designed to begin answering the question of whether care models like MIND can demonstrate the financial savings and value of community-based care in hopes that more health insurers might cover the cost programs like this in the future. In the trial, coordinators checked for home safety, nutrition and food availability and whether patients participated in meaningful or purposeful activities beyond simply watching television for much of the day. They also assessed whether patients should be evaluated for driving safety, whether they were at risk of wandering off and getting lost, and what local community resources were available to address unmet needs.

Beyond such services, the program 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 also discussed, and coordinators contacted family members at least once a month. Home and personal safety issues affected 90 percent of the participants at the start of the trial, the researchers report. Some 65 percent needed general medical care, 52 percent showed a lack of meaningful activities and 48 percent needed legal/advance care planning.

The memory care coordinators were community workers and did not have clinical backgrounds or prior training in caring for people with , suggesting that the potential workforce that could acquire coordinator skills is large, Samus says. Coordinators received intensive training over 4 weeks, including lectures, role play, and observation of dementia patients in clinical settings.

The care coordinators received hands-on support from a nurse and a physician and the team met weekly to discuss cases.

The results suggest wider application of the home care model should be evaluated in the future as well as whether it can provide a cost-benefit to public insurers like Medicaid and Medicare, says Samus.

Explore further: Living at home with dementia

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