Editor's note: For this month's post from Geriatric Psychiatry, Dr. Kales is joined by Dr. Laura N. Gitlin, Professor and Director of the Center for Innovative Care in Aging at the Johns Hopkins School of Nursing, and Dr. Constantine Lyketsos, the Elizabeth Plank Althouse Professor at Johns Hopkins School of Medicine and director of the Johns Hopkins Memory and Alzheimer's Treatment Center.

As clinicians and researchers working in the field of dementia care, we are heartened by efforts underway to increase funding for Alzheimer's and other dementias to record levels. We are also pleased with the increasing attention devoted to dementia at a national level, as evidenced by the National Alzheimer's Project Act (NAPA) and the recent issue of the journal Health Affairs dedicated completely to "The Long Reach of Alzheimer's."

Nevertheless, the increased focus on Alzheimer's has all but ignored one of the most devastating features of this disease: the behavioral symptoms of dementia.

Contrary to popular belief, the "memory" part of Alzheimer's is just one symptom. Far more troubling to family and other caregivers are the behaviors that accompany cognitive changes including agitation, depression, delusional beliefs, repetitive questioning, pacing, hallucinations, aggression (physical and verbal), sleep problems, wandering, and a variety of socially inappropriate actions. These behaviors occur across all types and stages of dementia and in almost every person with one of these conditions. Coping with behavioral problems is one of the most complex, stressful, and costly aspects of care, leading to frequent hospitalizations, early nursing home placement, rapid disease progression, and increased mortality.

Ignorance of behavioral issues is not bliss

These very challenging symptom-related issues are missing in many of the news reports and journal articles related to Alzheimer's disease.

Take the Health Affairs issue on dementia: in over 700 pages devoted to the key issues related to dementia, behavioral symptoms of dementia received mostly passing mentions, with no article devoted exclusively to them, their impact or effective ways to treat them.

Similarly, behaviors have received only brief mentions in NAPA thus far. Yet, for millions of family caregivers, even those who have help, the effort required to cope with these behaviors causes stress and depression, leading to their own health care issues and income loss. Further, many of the hospitalizations associated with the high costs of dementia stem from these distressing behaviors and are preventable.

But we aren't talking much about these issues. Why? We suspect that most people shy away from the "psychiatric" manifestations of a "neurological" illness because such symptoms remain stigmatized; a huge elephant in the room that is ever-present but little discussed.

Unfortunately, this oversight reflects the kind of care that our patients receive and the support (or lack thereof) that their families experience.

Doctors use DICE to help patients and caregivers

Providers on the "front-lines" of care often have had no formal (or even informal) training in managing the behavioral symptoms of dementia. Faced with tough problems, as well as suffering patients and families, doctors frequently prescribe medications like antipsychotics that are mostly used for patients with other mental illnesses. Few of these medications work well for dementia and they carry substantial risks—falls, sedation, worse memory problems and even death.

Part of the solution to the incomplete approach to U.S. dementia care is to improve care for the ubiquitous behavioral symptoms of dementia. Better prevention and management of symptoms could dramatically improve care and bring down costs.

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Studies have shown the promise of non-medication approaches to improving behavioral symptoms by making changes in the patient's environment and daily life. These changes include things like simplifying the environment, learning how to gently approach and communicate with the person and keeping to a daily routine.

We recently published a method to create a comprehensive approach to symptom management in the Journal of the American Geriatrics Society. Dubbed "DICE" for Describe, Investigate, Create and Evaluate, our approach details key patient, caregiver and environmental considerations with each step and describes the "go-to" behavioral and environmental interventions that should be considered for difficult behaviors. Doctors on the front lines need an easy-to-use approach to help them think through behavioral assessment and management by using evidence-informed clinical pathways, and the input of family caregivers.

  • Describe: Have the caregiver and the patient (if possible) describe to the physician the circumstances that give rise to problem behaviors, including the who, what, when, where and the social context in which they occur. As a caregiver, you can help by writing down your observations of your loved one's behaviors and sharing them with their doctor during your next visit. 
  • Investigate: The doctor, in turn, should strive to obtain a well-rounded picture of their patient's health, dementia symptoms, sleep habits and medications. They can then combine that information with knowledge of the person's social environment, as well as how they interact with you, the caregiver, to get a sense for the factors that contribute to adverse behaviors.
  • Create: Health care providers should work with caregivers to develop effective ways to respond to dementia behaviors, including such interventions as changing the patient's environment or redirecting them to engage in an alternate activity.
  • Evaluate: The doctor should evaluate their patient's treatment and care plan on an ongoing basis, modifying it when necessary.

At the same time that we are focusing societal dollars on research into cures for Alzheimer's (which will certainly still take decades to find), we cannot ignore the fundamental importance of helping families and patients to manage the disease in the here and now. Behavioral symptoms related to Alzheimer's and other dementias are, indeed, the elephant in the room. We already know how to deal with that elephant. We must do so now!