Answering the Urgent Call to Improve Care for the Growing Number of Americans with Dementia

RWJF Nurse Faculty Scholars focus on independence and quality of life for fragile population.

    • July 14, 2014
Nurse Faculty Scholar Beth Galik

Conventional wisdom has it that dementia is a normal part of aging. Not so, say health care experts—but it is a problem the health care system, and the country, will need to manage in coming years.

Alzheimer’s disease, the leading cause of dementia, is a deadly condition that claims more than half a million lives every year—more than breast and prostate cancer combined, according to the Alzheimer’s Association. By 2050, 16 million Americans, more than triple the current number, will have Alzheimer’s disease, the association warns.

With the U.S. Census Bureau predicting that, by 2050, about 40 million people, or 20 percent of the population, will be 65 or older, Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholars are working now to get ahead of the problem. “We’re all well aware of our aging population and how we’re going to see more individuals with Alzheimer’s disease or some other form of dementia,” says Elizabeth Galik, PhD, CRNP, an associate professor of nursing at the University of Maryland and an RWJF Nurse Faculty Scholar (2009-2012). The fastest-growing segment of the older population is 85 and older, she notes, and almost half are thought to have some form of dementia.

There is no known cure for Alzheimer’s disease, which has a disproportionate effect on women, Blacks, and possibly Latinos too. But nurse scientists like Galik are working to find ways to help older adults with cognitive problems maintain independence and quality-of-life for longer periods.

Galik is exploring how best to improve functional and physical activity among older adults with dementia who reside in assisted-living facilities and nursing homes. Her goal is to determine whether residents are provided enough opportunities to care for themselves and engage in physical activity, which will help maintain function and independence—and help them stay out of costly, care-intensive nursing homes.

For her RWJF research, she assessed individuals’ functionality and their relationships with assisted-living facility staff at four locations in the Washington, D.C.-Baltimore metropolitan area. She found that the “function-focused care approach” led to more independence in eating performance in the treatment group.

“More often than not, the rate of decline in function of adults with dementia in assisted living facilities is significant, and within a year, many are transferred to nursing homes,” she says. “This doesn’t have to be the case. ... In some cases where staff try and be more helpful for patients with dementia, they inadvertently create greater dependency, accelerating the individual’s decline. With the right training and the right institutional policies, older adults can live healthier lives with greater independence.”  

Tackling Dementia Care

Other RWJF Nurse Faculty Scholars are tackling dementia care from different angles.

Tatiana Sadak, PhD, PMHNP, (2013-2015), an assistant professor at the University of Washington School of Nursing, is promoting “dementia caregiver activation,” a process of preparing caregivers to become ready to manage the multiple needs of loved ones with dementia while caring for themselves.

Almost half of caregivers regularly perform medical or nursing tasks for loved ones with chronic conditions, but they have varying degrees of success. Patient activation, she notes, has led to improved outcomes, reduced emergency department visits and hospitalizations, as well as increased medication adherence and quality of life.

LuAnn Etcher, PhD, GNP-BC, (2012-2014), an assistant professor at the Yale University School of Nursing, is seeking ways to help people with Alzheimer’s maintain stable sleep patterns. Alzheimer’s patients can suffer from circadian dysfunction, which may contribute to sleep, cognitive, and behavioral problems. Etcher’s current study will include a focus on older Black women, since they may be more likely to develop dementia than Whites and are an understudied group.

“The ultimate goal for my program of research is to find ways to ameliorate these symptoms, therefore improving the quality of life of individuals living with dementia and their caregivers,” she said.

And Allison H. Burfield, PhD, RN, (2013-2016), an assistant professor at the University of North Carolina-Charlotte School of Nursing, is studying medication use in elderly patients. Many older adults with dementia may be receiving inappropriate medications because they are unable to verbalize their needs due to cognitive impairment, she says. For her RWJF-supported research, Burfield is evaluating an intervention to assess and treat pain in older adults with dementia.

The Nurse Faculty Scholars award, she said, “provides a wonderful opportunity to conduct interdisciplinary research that evaluates how we can reduce the use of medications that have an altering effect on perception, emotion, or behavior on older adults, and better intervene and treat pain.”

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This article is part of the July 2014 issue of Sharing Nursing’s Knowledge, a monthly email newsletter from RWJF featuring timely news and in-depth information about research, conferences and grants, our partners, and other organizations working in this field.

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