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Online Tool Helps Caregivers when Dementia Symptoms Overwhelm

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Dementia can make the process of caregiving into a daily or even hourly struggle. Caregiving for a loved one is hard enough, but when that person begins to exhibit some of the behavioral difficulties that often accompany dementia, the challenges increase exponentially.

But now there’s a resource available to caregivers desperate for tools to help manage a loved one’s challenging behavior.  We read about this topic in this recent article from the Washington Post, jointly published by KFF Health News and written by KFF reporter Judith Graham. In her article, she describes what she calls “a first-of-its-kind website” which is designed to offer caregivers “a comprehensive approach to managing combativeness and other neuropsychiatric symptoms of dementia.”

We were intrigued, so we decided to bring it to the Blog for a closer look.

Caregivers Coping with a Loved One’s Aggressive Behavior

Graham begins, “Caring for older adults with dementia is stressful, especially when they become physically or verbally aggressive, engage in other inappropriate or repetitive behaviors, or refuse to let caregivers help them.”

Moreover, these behavioral symptoms are not an isolated issue: over 95 percent of patients experience these and other similar dementia symptoms, which “tend to fluctuate over time and vary in intensity,” Graham notes. The Alzheimer’s Association adds that these symptoms are often the reason that people with dementia end up in assisted-living facilities and nursing homes.

“At some point,” Graham writes, “families and friends trying to help at home simply can’t manage.”

Mary Blazek, director of the Geriatric Psychiatry Clinic at the University of Michigan, puts it this way: “When people think about dementia, they usually think about forgetfulness and memory impairment. But it’s behavioral and psychological disturbances that are most disruptive to patients’ and caregivers’ lives.”

A New Website Promises Real-Time Help for Caregivers

But help is available, and one example comes in the form of a first-of-its-kind website created by prominent experts in the field. Graham writes that the website “offers free training in a comprehensive approach to managing neuropsychiatric symptoms of dementia — a method known as DICE, based on decades of scientific research as well as extensive clinical practice. DICE stands for Describe, Investigate, Create and Evaluate, the four pillars of the approach.”

The website, called DICE Approach, is described as a “one-stop location for evidence-informed training for assessing and managing the behavioral symptoms of dementia.”

Helping Caregivers Manage Distressing Situations

According to Helen Kales, one of DICE’s creators and chair of the Department of Psychiatry and Behavioral Sciences at UC Davis Health in Sacramento, says that the website’s goal is to “give people tools to better manage often-distressing situations.”

Graham adds, Users learn that neuropsychiatric symptoms are caused by changes in the brain that increase people’s vulnerability. Nine video modules and two simulations provide comprehensive information and problem-solving techniques.”

The DICE training is free, though people can pay for an optional written version of the manual if interested.

For Dementia Caregivers, a Tool to Move Beyond Prescription Drugs

This training could be a massive boon to a significant number of people. According to Graham, more than 16 million unpaid caregivers help people with dementia live at home, mostly family members and friends. The most common form of dementia, Alzheimer’s disease, affects  nearly 7 million Americans 65 and older, and about 20 percent of patients live in an institutional setting, like a nursing home.

DICE has other goals, says Kale, as it’s also designed to help “avoid the knee-jerk prescribing of psychoactive medications” that have potentially serious side effects. While non-pharmaceutical approaches to difficult behaviors are often recommended by medical organizations, in practice this doesn’t routinely happen.

Graham writes, “Drugs prescribed for dementia include antipsychotic medications, such as risperidone, that carry black-box warnings noting a higher risk of early death in elderly patients; anticonvulsants, such as gabapentin, whose use has been on the rise despite safety concerns; benzodiazepines, such as Ativan, which are associated with an increased risk of falls and, thus, fractures; and Celexa and other such antidepressants that have limited data supporting their effectiveness in easing dementia symptoms.”

Website Helps Caregivers Understand, Address Disturbing Behavior

DICE approaches disturbing behaviors with a refreshing mindset: that people with dementia engage in these behaviors for often-unrecognized reasons, and that these underlying reasons can be addressed once they are understood.

Graham provides us with an example from the website: Jennifer, a 55-year-old caregiver for her mother, 85-year-old Betty. Jennifer routinely attempts to bathe Betty every day, in the afternoon, but Betty resists getting into the tub. This leads to conflict, as Jenny tries to rush her mother into it, and Betty gets agitated and smacks her, replying, “Leave me alone. It hurts.”

“DICE asks caregivers to step back from the heat of the moment and examine issues from three perspectives: the person with dementia, the caregiver and the environment,” Graham explains. “All can contribute to distressing situations, and all need to be considered in fashioning a response.”

Consider the Underlying Causes of the Behavior

Graham then goes on to examine the example problem through using a “who, what, when, how, why” prompt, which reveals several issues. We’ve included the following verbatim from Graham’s article, to follow her thought process:

The patient: Betty has arthritis and may experience pain getting in and out of the tub. She may feel tired and overwhelmed in the late afternoon.

The caregiver: Jennifer may become easily frustrated when she encounters resistance — adopting a scolding and commanding tone rather than breaking down what Betty needs to do in simple steps.

The environment: The bathroom tends to be cold, with overly bright lights, tepid bathwater and no grab bars around the tub.

Explore Possible Solutions That Can Reduce the Stress

The website goes on to offer some possible solutions to the example: “Offer Betty an over-the-counter pain reliever before her bath. Try baths in the morning, not the afternoon. Relax expectations that she’ll have a daily bath and offer sponge baths several times a week. Install grab bars around the tub, and make sure the water temperature is comfortable. Use a nicely scented soap and play music to help Betty relax. Speak calmly, making simple statements.”

These strategies have been proven to improve neuropsychiatric symptoms associated with dementia by “recognizing and addressing underlying medical issues such as pain, infections or delirium; simplifying the tasks a person with dementia is expected to perform; and establishing daily routines that give structure to the day,” Graham explains.

Family Caregivers Need to be Patient, Persistent, Creative

DICE also offers other strategies that are more preventative in nature, such as engaging the person in activities that they enjoy or mean something to them. Social interactions, a tidied space, and reduced potential for overstimulation can be very beneficial. Ensure that the person is using hearing or vision aids, if needed, and make sure they get plenty of time outside, fresh air, and natural light.

“Of course, this isn’t a comprehensive list of recommendations. Nor is the method prescriptive. What works for one person with dementia may not work for another,” Graham adds.

The key is a bit of creativity, according to Kales, who says that DICE works best with frequent evaluation to assess whether strategies are working. If not? Try something different. Moreover, if safety, psychosis, or major depression are urgent concerns, Kales recommends using psychoactive medications under the watchful care of a physician.

One State Has Adopted the DICE Approach in Every County

DICE may be a newer term for most of the country, but there’s one place where it’s become common among healthcare professionals: Wisconsin. In fact, all of Wisconsin’s dementia-care specialists have been trained in DICE, and every county in that state has a specialist who helps families with dementia-related issues.

“It’s a really pragmatic approach that’s put together in a very thoughtful fashion,” says Art Walaszek, a professor of psychiatry and medicine at the University of Wisconsin School of Medicine and Public Health. He has been involved in the effort of state-wide adoption of the training.

There are alternatives, and many are available online. Graham concludes her article: “Another valuable resource, Best Programs for Caregiving, launched in March, lists evidence-based programs across the country and their availability. Enter a Zip code to find information that previously hasn’t been assembled in one place. This site, too, is very much worth consulting.”

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(originally reported at www.washingtonpost.com)

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