DICE Is for Dementia

It started with increased forgetfulness, like leaving an umbrella in a restaurant or forgetting an appointment. Next, she noticed trouble with word retrieval and remembering names, not unusual in those of us who remember when Paul McCartney was a Beatle instead of a member of the rock group Wings. Her symptoms progressed, however, becoming more and more alarming until, more than two years later, she was diagnosed with dementia.

According to Helen C. Kales, MD, a geriatric psychiatrist and Chair of the Department of Psychiatry and Behavioral Sciences at UC Davis Health and the School of Medicine at the University of California, Davis, dementia is an umbrella term used for a constellation of symptoms which can present in diseases such as Parkinson's, brain tumors, AIDS, metabolic and vascular disorders and some viral syndromes. 

Alzheimer's disease is the most common cause of dementia in the United States. When we think about the condition, we usually think of, along with memory loss, things such as putting objects in the wrong place (a hairbrush in the freezer, for example,) getting lost on the way home, or endless repetition of the same question.

Kales says that "the cardinal signs are sustained loss of short-term memory accompanied by word-finding problems, loss of executive functioning which includes sequencing, organizing, planning and the ability to purposefully do things in stepwise fashion, as well as difficulty in carrying out some physical functions."

Many of us aren't aware of the behavioral or psychological symptoms of dementia, referred to as BPSD. Also called noncognitive neuropsychiatric symptoms, these affect about 98% of patients during the disease, with symptoms that include aggression, depression, anxiety, delusions, hallucinations and paranoia.

Apathy, marked by loss of interest in things, diminished emotional reactivity, and agitation, manifested by excessive pacing, shouting, wild gesturing, or physical lashing out, are two predominant conditions seen in almost half of people with Alzheimer's disease and other dementias.

Aggressive behaviors and disinhibition - inappropriately blurting out comments or being sexually provocative – lead to behaviors that cause anxiety and embarrassment to loved ones, increasing caregiver stress and, at times, lead to early placement in a residential facility.

For many years, the primary treatment for these behaviors was medication, usually antipsychotic drugs, whose side effects can be severe for older adults. The only FDA-approved medication for agitation in Alzheimer's is Rexulti (brexpiprazole), but antipsychotic drugs, anti-anxiety medications, and anticonvulsants are often used off-label.

Kales points out that there are only three clear indications for using psychotropic medications in dementia, needed to curtail risky behaviors that could cause harm to self or others. These include severe depression, psychosis with hallucinations or delusional thinking, and aggressive, assaultive behaviors.

"We look at the risk-benefit profiles when we decide whether to use medications, but we don't want a knee-jerk use of them without looking at what might be underlying the problematic behaviors," she said.

In 2011, a multidisciplinary panel was convened to brainstorm nonpharmacologic approaches. As a result, the evidence-based DICE approach (Describe, Investigate, Create, Evaluate) was created to assess, understand and modify unwanted behaviors. 

Since its publication almost ten years ago (2014), DICE has been lauded in the U.S. and internationally. It has been implemented in skilled nursing facilities, memory care centers and day programs and is increasingly used by family members and at-home caregivers.

Looking at ways in which features of the patient, the caregiver, and/or the environment can increase troublesome behaviors, the four-step DICE process includes:

• Describing the symptoms and the context in which the behavior occurs (i.e., does the individual become more upset during transitions? Is there a time of day when emotional distress becomes more pronounced?)
• Investigating possible underlying and modifiable causes (sleep deprivation, constipation, need for hearing aids)
• Creating and implementing a treatment plan that includes treating medical issues, providing meaningful activities, simplifying tasks, establishing routines and improving communication
• Evaluating how well the interventions work

Along with the brain-related changes seen in dementia, the Alzheimer's Association says that behavioral and psychiatric symptoms can be caused or exacerbated by triggers such as:

• Pain, infection or medical illness, fatigue
• Prescription drug interactions
• Changes in living situation (moving to a new home or facility, hospitalization)
• Change in caregiver arrangements
• Uncorrected visual or hearing loss
• Misperceived threats
• Fear or frustration in being asked to do something difficult due to a decline in cognitive skills

Other things, besides physical discomfort, that might be contributing to increased negative behaviors on a given day might include:

• Too many people at a dinner table excitedly talking at once
• Being asked to do a puzzle or a craft project that is too challenging
• Boredom – (good solution – give the person a simple, repetitive task that they can accomplish like folding towels or trying out an adult coloring book)
• A new scratchy sweater or shoes that are too tight

The DICE paradigm emphasizes that behavior is a way of communicating about an unmet need, particularly in a person who can no longer use language to articulate thoughts and feelings. Behavioral expressions, often complex to puzzle out, are called "responsive behaviors," meaning the person is responding to something in their personal, social or physical environment.

Here's a simple example. Mrs. M's daughter noticed that her mom became more confused and agitated around late afternoon, stretching into the evening, a frequently experienced phenomenon called sundowning. Showering her before bedtime and putting on her nightgown became a significant struggle. 

Using DICE, her daughter described the context and the symptoms, investigated the cause (and learned that late afternoon caffeine and end-of-day fatigue could worsen sundowning and irritability), considered whether a change could be made, created a treatment plan (showering her mom in the morning and have her avoid coffee after lunchtime, encourage a short nap if tired) and evaluated the result (Evenings became much calmer and the family could watch TV together, a pleasant and relaxing activity).

In 2015-2016, a controlled trial of the WeCareAdvisor tool, which gave family members and caregivers a step-by-step approach to using the DICE method to decrease negative behaviors, found that its use significantly reduced caregiver distress. 

Now, WeCareAdvisor, an ongoing research study funded by the National Institute on Aging, is evaluating ways in which the use of an interactive online app based on the DICE protocol can provide customized strategies to manage problematic neuropsychiatric behaviors. 

There is also a reasonably-priced subscription-based set of online training tools, with videos narrated by Dr. Kales and interactive case-study e-simulations, worksheets and educational quizzes. An official DICE training manual companion is sold separately.

DICE gives us the tools to assess and respond to the needs of a person with dementia, whether it be a cooler room temperature, a chair with firmer back support, or a reassuring comment and a warm embrace. These can all be helpful and healing interventions without a pill in sight.

Barbra Williams Cosentino RN, LCSW, is a psychotherapist in Queens, N.Y., and a freelance writer whose essays and articles on health, parenting and mental health have appeared in the New York Times, Medscape, BabyCenter and many other national and online publications. Read More