Although cognitive and functional decline are the cardinal features of dementia syndromes, the associated neuropsychiatric symptoms are some of the most common and troubling manifestations of these debilitating diseases. These symptoms include agitated or aggressive behaviors, such as yelling, biting, and hitting, and psychotic symptoms, such as paranoia and hallucinations. Given that an estimated 5.4 million Americans have Alzheimer disease and that neuropsychiatric symptoms eventually develop in 60% of community-dwelling patients and more than 80% of nursing home patients, one can appreciate the scope of this problem. Moreover, these symptoms are exceedingly difficult for both clinicians and families to manage, making this a particularly relevant aspect of caring for patients with dementia.
These common dementia-associated neuropsychiatric symptoms carry risks for decreased quality of life, increased cost of care, more rapid cognitive decline, and tremendous caregiver burden. Caregivers often neglect their own physical and emotional needs, which can lead to depression, anxiety, irritability, and insomnia.1-4 When caregivers are burned-out and symptomatic themselves, the risk of substandard patient care, not to mention neglect and abuse, becomes much higher.
Increased caregiver burden, in particular, carries with it significant repercussions for patients and families, because caregiver stress is clearly associated with more rapid patient institutionalization. Apart from the often difficult emotional repercussions from placing a loved one in a nursing home, early institutionalization has obvious financial implications for the entire health care system. Indeed, neuropsychiatric symptoms can shorten the time to nursing home placement by as much as 2 years. Although the data are conflicting, some studies have shown a connection between neuropsychiatric symptoms and increased mortality.5
As common and debilitating as these symptoms are, clinicians have few ways of adequately addressing them. There are no FDA-approved treatments for patients with dementia-related agitation or psychosis. Moreover, historical accounts of treatment of nursing home patients with such mental disorders (including dementia-related neuropsychiatric symptoms) and recent data on the risks of using antipsychotic medications in this population have made choosing a course of action even more complex.
Until quite recently, the psychiatric conditions of nursing home residents were often misdiagnosed or ignored. This led to the related problems of neglect or inappropriate treatment, often with physical and so-called chemical restraints. Early data indicated that 25% of 1.3 million nursing home residents were in physical restraints for the control of behavioral problems, despite the potential adverse effects of injury, skin breakdown, and demoralization, as well as the fact that physical restraints do not decrease behavioral disturbances.6
Studies from the 1970s and 1980s indicated that between 20% and 50% of nursing home residents were receiving psychotropic medications.7-12 Unfortunately, there was little concern for documenting residents’ psychiatric diagnoses, recording results of mental status examinations, and obtaining psychiatric consultation. Specific concern was expressed that neuroleptic medications were being used as a form of chemical restraint, without consideration of less burdensome and risky forms of treatment, such as alternative classes of drugs or behavioral interventions. Moreover, once treatment with a neuroleptic medication was started, patients frequently continued the regimen long term, without any clear indication or attempts to taper the dosage or discontinue use once acute symptoms were stable.