Caring for older adults with dementia can be particularly challenging and stressful, especially when they exhibit physically or verbally aggressive behaviors, wander away from home, develop paranoia or hallucinations, engage in inappropriate or repetitive actions, or refuse assistance from caregivers.
Up to 95% of patients with dementia experience neuropsychiatric symptoms, which tend to fluctuate over time and vary in intensity. These symptoms are the primary reasons people with dementia are placed in assisted living facilities or nursing homes, as families and friends often find it too difficult to manage care at home.
"When people think about dementia, they usually think about forgetfulness and memory impairment," said Mary Blazek, director of the geriatric psychiatry clinic at the University of Michigan. "But it's the behavioral and psychological disturbances that are most disruptive to patients' and caregivers' lives."
Now, a first-of-its-kind website created by prominent experts in the field offers free training in a comprehensive approach to managing neuropsychiatric symptoms of dementia. This method, known as DICE, is based on several decades of scientific research and extensive clinical practice.
The website's goal is to provide tools for better managing often-distressing situations, according to Helen Kales, chair of the Department of Psychiatry and Behavioral Sciences at UC Davis Health in Sacramento, California, and one of the creators of DICE. Users learn that neuropsychiatric symptoms are caused by changes in the brain that increase people's vulnerability. Nine video modules and two simulations offer comprehensive information and problem-solving techniques.
More than 16 million unpaid caregivers, primarily family members and friends, help people with dementia live at home. Approximately 20% of patients reside in institutional settings. The most common form of dementia, Alzheimer's disease, affects nearly 7 million Americans aged 65 and older.
DICE is designed to help "avoid the knee-jerk prescribing of psychoactive medications" that have potentially serious side effects, according to Kales. Several medical organizations recommend trying non-pharmaceutical approaches to manage troublesome behaviors before resorting to drug therapy, but this is not always practiced.
Drugs prescribed for dementia include antipsychotic medications like Risperidone, which carry a black-box warning for an increased risk of premature death in elderly patients; anticonvulsants like gabapentin, whose usage has risen despite safety concerns; benzodiazepines like Ativan, which are linked to an increased risk of falls and fractures; and antidepressants like Celexa, which have limited evidence supporting their effectiveness in easing dementia symptoms.
DICE stands for Describe, Investigate, Create, and Evaluate, forming the four pillars of this approach. The core assumption is that people with dementia exhibit disturbing behaviors for often-unrecognized reasons that can be addressed once understood.
For instance, the website features Jennifer, a 55-year-old caregiver for her mother, Betty, 85, whom she tries to bathe daily in the late afternoon. When Betty resists getting into the tub, Jennifer insists, "Let's go! I have things to do." Betty responds by smacking her and shouting, "Leave me alone. It hurts."
DICE encourages caregivers to step back and examine issues from three perspectives: the person with dementia, the caregiver, and the environment. All these factors can contribute to distressing situations and need to be considered when formulating a response.
Examining the problem using a "who, what, when, how, why" approach can reveal several potential issues:
- The patient: Betty has arthritis and may experience pain getting in and out of the tub. She might feel tired and overwhelmed in the late afternoon.
- The caregiver: Jennifer may become easily frustrated when encountering resistance, adopting a scolding and commanding tone instead of breaking down what Betty needs to do into simple steps.
- The environment: The bathroom tends to be cold, with overly bright lights, tepid bathwater, and no grab bars around the tub.
Some possible solutions discussed on the website include offering Betty an over-the-counter pain reliever before her bath, trying baths in the morning instead of the afternoon, and relaxing expectations that she needs a daily bath, opting for sponge baths several times a week. Installing grab bars around the tub, ensuring the water temperature is comfortable, using a nicely scented soap, and playing music to help Betty relax are also suggested. Speaking calmly and making simple statements can also help.
These strategies embody approaches shown 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 provide structure.
Other important steps include engaging the person in meaningful activities, including social interactions, reducing clutter and potential overstimulation in the environment, ensuring the use of hearing or vision aids if needed, and exposing them to outdoor light.
If safety, psychosis, or major depression are urgent concerns, psychoactive medications may be considered after consulting a physician.
However, this is not a comprehensive list of recommendations, nor is it prescriptive. What works for one person with dementia may not work for another.
Using DICE is an iterative process involving creativity and frequent evaluation to assess whether strategies are effective. If not, new interventions should be tried, according to Kales.
Although this is the first time family caregivers can access the DICE toolkit, the program has been available to health care professionals for a while. Notably, all of Wisconsin's dementia care specialists have been trained in DICE over the past few years (every county in that state has a specialist who helps families with dementia).
"It's a really pragmatic approach that's put together in a very thoughtful fashion," said Art Walaszek, a professor of psychiatry and medicine at the University of Wisconsin School of Medicine and Public Health who has been involved in that effort.
Other dementia training programs are available, some of which review behavioral and psychiatric symptoms in less depth, and they, too, are increasingly available online. 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 is also very much worth consulting.