Personalized Online Help for Dementia Caregivers Shows Promise

As air travelers well know, in the event of an emergency, you put on your own oxygen mask before assisting others.

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This is, it turns out, good advice in many of life's stressful situations. We need to take care of ourselves to more effectively help others.

As such, a newly published study shows the potential for an online tool to help people who take care of those with dementia to ease their own burden, by helping them anticipate and respond to the behavioral and psychological symptoms of the illness.

For the 15 million family members currently caring for the 5 million people with dementia in the United States, self-care is an absolute necessity. The daily demands placed on these caregivers create distress, which can seriously erode their ability to look after their loved ones' well-being as well as their own health.

As the number of older Americans grows, dementia is projected to affect 16 million Americans by 2050, with 98 percent of these individuals experiencing symptoms such as depression, anxiety, delusions, wandering, aggression and sleep problems.

Helen C. Kales, M.D., a U-M professor of psychiatry, leads an effort called the Program for Positive Aging that's working to create innovative options for dementia caregivers, providing reliable and well-evaluated information and training, developing support tools, and studying how to enhance self-care.

One web-based caregiver support tool, called the WeCareAdvisor and developed by Kales and the PPA with collaborators at Johns Hopkins University, has been shown to measurably reduce caregiver distress, according to an evaluation published in BMC Geriatrics.

In a randomized controlled trial involving 57 dementia family caregivers, half of whom were spouses of a dementia patient, Kales and her colleagues looked at the effect of using WeCareAdvisor for just one month.

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In that time, caregiver distress, and the frequency and severity of behavioral and psychological symptoms in the person with dementia, all decreased. But surprisingly for such a small study, the effect on caregiver distress was statistically significant.

Meanwhile, in families who were randomly assigned to wait one month before starting to use the tool, caregivers showed a significant decrease in confidence. After they began using the tool, their distress, stress, burden and episodes of negative communication went down, and their confidence went up — though only the decrease in distress remained statistically significant after the researchers adjusted for other factors.

"In this initial small trial, our hope was to show that the WeCareAdvisor was easy to use and would show trends to improving outcomes," says Kales, who is a member of the U-M Institute for Healthcare Policy & Innovation. "Thus, we were thrilled to see the WeCareAdvisor show significant impact on caregiver distress in such a short time of use."

Although it's a small pilot study, the significant drop in caregiver distress gives Kales and her colleagues impetus for further research to examine whether using WeCareAdvisor for longer periods can significantly impact other caregiver and behavioral outcomes. A trial of three months of WeCareAdvisor use is now being planned.

Kales will discuss WeCareAdvisor and other PPA-developed products to benefit individuals with dementia and their caregivers at the Precision Medicine World Conference in Ann Arbor on June 7.

How the program works

WeCareAdvisor is designed to lead the family caregiver through the assessment, management and monitoring needed to accomplish the following:

• Identify and address the underlying causes of behavioral symptoms (e.g., pain, urinary tract infection, communication issues, environmental overstimulation, etc.)

• Reduce behaviors

• Reduce caregiver distress

• Enhance confidence in managing behaviors by teaching the user new and transferrable problem-solving skills such as enhanced verbal and nonverbal communication

The bedrock of the WeCareAdvisor tool is the "DICE" approach to dementia behaviors that was developed in 2011 from a U.S. national multidisciplinary expert consensus panel led by Kales and the PPA. Kales and her colleagues published a paper outlining the DICE approach in 2014, and it has gained widespread attention as a nondrug approach to managing the behavioral aspects of dementia.

SEE ALSO: Looking More Closely at Lewy Body Dementia

DICE comprises four steps:

• Describe the behavior from the caregiver's perspective to derive an accurate characterization and the context in which it occurs;

• Investigate having the health care provider examine, exclude and identify possible underlying causes of the behavior;

• Create and implement a treatment plan for the behavior as a partnership between the caregiver and the provider; and

• Evaluate which parts of the treatment plan were attempted and effective.

Within the DICE approach, behavioral triggers from the caregiver (unrealistic expectations, caregiver stress/depression, etc.); person with dementia (medical conditions, functional status, etc.); and environment (overstimulation, lack of routines, etc.) are evaluated and addressed by the provider and caregiver.

This approach puts behavioral and environmental strategies ahead of drugs in the management of dementia behaviors and is consistent with the stance of multiple medical organizations and expert groups on preferred first-line dementia treatments.

Each caregiver using WeCareAdvisor first goes through a process of describing a behavior that their loved one with dementia sometimes engages in, and then answering questions to help identify the kinds of "triggers" that set the behavior in motion. Then, the system draws from almost 1,000 strategies that can prevent or quell disruptive behaviors, and creates a prescription tailored to that patient and his or her caregiver and their environment. The program also contains a "Caregiver Survival Guide," a library of dementia care information and resources that caregivers can access anytime.

Although WeCareAdvisor is not currently available to caregivers outside the clinical trial process, Kales hopes that if it proves valuable after additional testing, it could be made available more widely.