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DICE Dementia Treatment Preferable to Drugs

By Jennifer Anderson

A new strategy for treating the behavioral and psychological symptoms that usually accompany dementia keeps drugs on a shelf unless safety or other concerns require pharmacological interventions.

In nursing homes and other settings in the United States, patients with dementia are receiving more medications than they need. "We know this because, if you look at Great Britain or Australia, the use of antipsychotics is three to four times lower," says Constantine Lyketsos, MD, director of the Johns Hopkins Memory and Alzheimer's Treatment Center and a coauthor of the new research, "Assessment and Management of Behavioral and Psychological Symptoms of Dementia," which recently appeared in BMJ.

Drugs tend to be overprescribed because of the context in which physicians are practicing, Lyketsos says. Prescribing drugs is supported by the Centers for Medicare & Medicaid Services (CMS), whereas behavioral evaluations and prescriptions are not. "The great irony," he says, "is that while CMS is pushing nursing homes and physicians to use fewer drugs, at the same time it is not giving physicians and nursing homes [incentives] to use alternatives."

Another irony: On the same day Lyketsos and colleagues published their report, the Government Accountability Office released a report recommending that the Department of Health and Human Services expand efforts to reduce antipsychotic drug use among older adults with dementia.

Dementia affects 44 million people worldwide—a number expected to increase to 76 million by 2030, according to the BMJ paper. In the United States in 2013, more than 15 million family members and friends provided nearly 18 billion hours of unpaid care to people with dementias including Alzheimer's disease.

As the number of cases of dementia increases, more and more people will be seeking ways to care for their loved ones, Lyketsos says, especially given that a cure for the disease remains beyond researchers' grasp. As one measure of the heightened interest in providing better care for patients with dementia, he says Internet metrics indicate that his paper has been among the most popular across media outlets.

Behaviors Cause Concern
According to lead author Helen C. Kales, MD, director of the program for positive aging at the University of Michigan, behavioral symptoms such as agitation, depression, apathy, repetitive questioning, psychosis, aggression, sleep problems, and wandering are nearly universal among older adults with dementia.

The symptoms often occur together (eg, agitation and depression or sleep problems and wandering). These behavioral symptoms are among the most complex, stressful, and costly aspects of care, according to the paper, also coauthored by Laura N. Gitlin, director of the Center for Innovative Care in Aging at Johns Hopkins University.

Generally these symptoms are treated with drugs, and the most common medications are antipsychotics. These medications have their place, especially in cases where a patient is at risk of harming himself or herself or someone else, Kales says.

"Unfortunately medications are being used a lot of times in cases such as wandering, where medication is really not a good first-line resource," she says. In fact, there are no medications that specifically treat wandering; instead, the drugs serve only to sedate the patient so that he or she can't wander.

Alternative Therapies
In our current health care environment, it is understandable that physicians and other care providers turn quickly to medications. It takes seconds to prescribe a drug, whereas training caregivers on nonpharmacological interventions is time intensive, and there are no one-size-fits-all therapies. Music, for example, may work for one patient but not another. Instead, behavioral and environmental interventions must be specifically tailored to meet the needs of the individual and the specific behavior.

The payoff, however, can be tremendous: The patient is not being prescribed another pill, and the right behavioral therapies tend to work much better than drugs and without the side effects that often accompany medications.

DICE Addresses Undesirable Behaviors
The researchers call their strategy Describe, Investigate, Create, and Evaluate (DICE), created in conjunction with a national multidisciplinary expert panel comprised of 12 US experts in dementia care and based on the current evidence as well as a wealth of clinical experience. 

The three scenarios that usually require medications are: agitation or aggression, the potential for harming oneself or someone else, and depression to a point at which a patient may not eat or sleep and which lends itself toward suicidal tendencies.

For nearly all other symptoms, behavioral and environmental interventions work better than drugs, and they reduce stress on the caregiver provided the caregiver receives the appropriate education, support, and training to effectively carry out the interventions.

The four steps of the DICE strategy include the following:

• Describe. Thoroughly describe and accurately characterize the symptoms and the contexts in which they occur. This description should come from a discussion with the caregiver and the person with dementia (if possible). As Kales explains, if the behavior is agitation, it's important to determine the actual behavior, eg, did the patient strike the caregiver during a bath? Was the water too hot? How was the caregiver talking to and approaching the patient?

• Investigate. Once the symptoms have been thoroughly described, the provider then needs to identify, or exclude, possible underlying and modifiable causes. These can include unmet needs such as fear or insufficient sleep, a need for eyeglasses or hearing aids, or acute medical problems including anemia, a urinary tract infection, or constipation. Current medications should be evaluated, and the researchers also recommend blood tests and urinalysis. Poor sleep habits and boredom also should be considered, along with the caregiver's relationship with the patient, including caregiver stress or depression that could exacerbate the patient's behaviors.

• Create. In this step everyone collaborates to create and implement a treatment plan. Treatments can be either nonpharmacologic (behavioral, environmental, or a combination) or pharmacologic. As the paper explains, priority should be given to treating physical problems, such as antibiotics for a urinary tract infection, or discontinuing drugs that cause behavioral side effects. The authors also recommend providers brainstorm behavioral and environmental approaches with caregivers and other members of the care team, which could include a visiting nurse or occupational therapist. The authors categorize the five domains of generalized strategies as educating the caregiver; improving communication between the caregiver and patient; creating meaningful activities for the patient; simplifying tasks and establishing structured routines; and ensuring safety and enhancing the environment.

• Evaluate. The final step is to assess whether the recommended strategies have been implemented and have had the desired effects. The authors wrote that because behaviors fluctuate over the course of dementia, ongoing monitoring is essential: "Previous trials have shown that caregivers can learn triggers for unwanted behaviors and to learn to spot these triggers before the symptoms fully develop."

To save caregivers time in recognizing behaviors and implementing DICE, the researchers also are working on a software-based tool called WeCareAdvisor, intended to help caregivers proceed through the four steps, and which also provides a single reservoir for resources and answers to common questions.

Kales explains that a feature of WeCareAdvisor is a peer navigator who walks the caregiver through the steps of DICE to help the caregiver generate a behavioral prescription. The prescription includes tips for safety, medical issues, behavioral and environmental strategies, and the caregivers themselves, such as taking time for themselves, she says. Kales notes that there is also a resource section to put dementia-related educational materials at the caregiver's fingertips.

The technology will be tested this spring through a clinical trial. The trial will take place at two sites: Ann Arbor, Michigan, and Baltimore. At each site, 30 caregivers will be given the technology to use for one month. "We will look at how they use the tool, whether they like the tool, their rates of medication use, stress levels, and whether they experience more confidence as caregivers," Kales says.

While the researchers have focused on community settings, "We feel this also could work very well in nursing homes or other settings," Kales says. Tweaks and other modifications can be made for settings outside the home. Kales explains that in her clinical experience with nursing homes, it can take up to one year for staff to accept and follow a new way of doing things—in this case turning to DICE first rather than seeking a prescription. In nursing home settings, "It really is not something that one person can change on their own," she says. "It has to be a culture shift so everyone is on the same page."

Lyketsos adds that physicians as well need to become educated in DICE and in writing prescriptions for DICE as an alternative to prescribing medications. Once the physician writes a prescription, a nurse or occupational therapist could then be assigned to work with the caregivers.

Incentives, including reimbursements, for learning DICE will come in time, Lyketsos says, because it works and because families prefer behavioral and environmental interventions to medications. "It's neither obvious nor rocket science," he says of DICE. "But it does require education and experience."

— Jennifer Anderson is a freelance health and science writer based in Falls Church, Virginia.