Problem behavior in the last year of life: Prevalence, risks, and care receipt in older Americans

OBJECTIVES: To estimate the prevalence of problem behavior in the last year of life in older people and to explore risk factors and assess the effect of behaviors on access to care. DESIGN: Retrospective analysis of data from the 1993 National Mortality Followback Survey, conducted by the National Center for Health Statistics (NCHS). SETTING: Persons who resided and died in the United States (except South Dakota) in 1993. PARTICIPANTS: Seven thousand six hundred and eighty-four deaths in people age 65 and older were included, from which full informant interview data were available for 6,748 decedents (88%). MEASUREMENTS: Informant data were collected on frequency of complaints about behavior from family members, complaints from others in the community, bizarre behavior, destroying property, violent threats or attempts, and temper tantrums. RESULTS: Overall, 20% of decedents were reported as having any of the problem behaviors sometimes or often in the last year of life. Rates differed little by age at death or gender. Risks of having problem behaviors were higher for those with clinically diagnosed dementia, mental illness, alcohol abuse, and bronchitis or emphysema. A diagnosis of dementia had been made in 27% of those with behavior problems. Nursing homes or healthcare facilities were the usual residence of 32% of people with any behavior problems sometimes or often during their last year of life. In formants for decedents who had destroyed property or made violent threats were 2.3 times (95% confidence interval (CI) = 1.2-1.4) more likely to report that the subject had not received the care they had needed during the last year of life. CONCLUSION: Problem behavior is relatively common in older people in the last year of life and is not confined to nursing home residents or people suffering from dementia.