There is new help for dealing with aggression in people with dementia

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This article was originally published on KFF Health News.

Caring for older adults with dementia is stressful, especially if they become physically or verbally aggressive, wander away from home, develop paranoia or hallucinations, exhibit inappropriate or repetitive behaviors, or refuse to be helped by caregivers.

More than 95% of patients experience these neuropsychiatric symptoms of dementia, which fluctuate over time and vary in intensity. These are the main reasons why people with dementia end up in residential care centers or nursing homes. At some point, families and friends who try to help at home simply can’t.

“When people think of dementia, they usually think of forgetfulness and memory impairment,” says Mary Blazek, director of the geriatric psychiatric clinic at the University of Michigan. “But it is behavioral and psychological disorders that most disrupt the lives of patients and caregivers.”

Now help is available from a first website of its kind created by leading experts in this field. It offers free training in a comprehensive approach to managing neuropsychiatric symptoms of dementia – a method known as DICE – based on decades of scientific research and extensive clinical practice.

The goal of the website is to “give people tools to better manage often distressing situations,” says 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 provide comprehensive information and problem-solving techniques.

More than 16 million unpaid caregivers – mainly family members and friends – help people with dementia live at home. (An estimated 20% of patients live in institutional settings.) The most common form of dementia, Alzheimer’s disease, affects nearly 7 million Americans age 65 and older.

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DICE is also designed to help “prevent the prescribing of psychoactive medications” that may have serious side effects, Kales said. Several medical organizations recommend trying non-pharmaceutical approaches to challenging behaviors before treatment with medications, but in practice this is not done routinely.

Drugs prescribed for dementia include antipsychotic drugs such as Risperidone, which carries a black-box warning noting an increased risk of earlier-than-expected death in older patients; anticonvulsants, such as gabapentin, whose use is increasing despite safety concerns; benzodiazepines, such as Ativan, which are associated with an increased risk of falls and therefore fractures; and Celexa and other similar antidepressants for which there is limited data supporting their effectiveness in relieving dementia symptoms.

DICE is a mnemonic – a pattern of letters intended as a memory aid – that stands for Describe, Investigate, Create and Evaluate, the four pillars of this approach. At its heart is the assumption that people with dementia exhibit troubling behavior for often unrecognized reasons, which can be addressed once understood.

Take an example from the website of Jennifer, a 55-year-old caregiver for her mother, Betty, 85, who tries to wash them daily in the late afternoon. When Betty resists taking a bath, Jennifer insists, “Let’s go!” I have things to do.” Betty responds by slapping her and yelling, “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. They can all contribute to distressing situations and everything must be taken into account when formulating a response.

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Investigating the problem using a ‘who, what, when, how, why’ prompt can reveal several potential problems:

  • The patient. Betty has arthritis and may experience pain when getting in and out of the bath. She may feel tired and overwhelmed in the late afternoon.
  • The caregiver. Jennifer becomes easily frustrated when she encounters resistance; she adopts a scolding and commanding tone instead of listing in simple steps what Betty needs to do.
  • Area. The bathroom is often cold, with overly bright lighting, lukewarm bath water and no handles around the bath.

Some possible solutions discussed on the website: Offer Betty an over-the-counter pain reliever before bathing. Try to take a bath in the morning, not in the afternoon. Relax the expectation that she will bathe daily and offer sponge baths several times a week. Install grab bars around the tub and make sure the water temperature is comfortable. Use a nice scented soap and play music to help Betty relax. Speak calmly and make simple statements.

These include strategies shown to improve neuropsychiatric symptoms associated with dementia: recognizing and addressing underlying medical problems such as pain, infections, or delirium; simplifying the tasks that a person with dementia is expected to perform; and establishing daily routines that provide structure to the day.

Other important steps: Engage the person in activities that are meaningful to him or her, including social interactions. Reduce clutter and the chance of overstimulation in the environment. Make sure the person uses hearing or vision aids if necessary. Place them outside and expose them to light.

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If safety, psychosis or severe depression are pressing concerns, consider the use of psychoactive medications after consulting a doctor.

This is obviously not a comprehensive list of recommendations. It is also not prescriptive. What works for one person with dementia may not work for another.

Using DICE is an iterative process that involves creativity and frequent evaluation to assess whether strategies are working, Kales said. If not, new interventions should be tried.

While this is the first time caregivers have accessed the DICE toolkit, the program has been available to healthcare professionals for some time. Notably, in recent years, all dementia care specialists in Wisconsin have been trained in DICE (every county in that state has a specialist who helps families with dementia).

“It’s a very pragmatic approach put together in a very thoughtful way,” said Art Walaszek, professor of psychiatry and medicine at the University of Wisconsin School of Medicine and Public Health, who has been involved in that initiative.

There are other dementia training programs available, some of which cover behavioral and psychiatric symptoms in less depth, and these too are increasingly available online. Another valuable resource, Best caregiving programs, launched in March, provides an overview of evidence-based programs across the country and their availability. Enter a zip code to find information that wasn’t previously collected in one place. This site is also well worth consulting.

KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of the key operating programs at KFF – an independent source of health policy research, polling and journalism. Learn more about KFF.

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