Prevalence of Serious Mental Illness and Under 65 Population in Nursing Homes Continues to Grow

To the Editor:

In previous decades, the proportion of people in nursing homes (NHs) with behavioral health disorders increased steadily,^1,2 as did the proportion of people younger than 65.^3,4 Although we have less quantitative information about people with substance use disorder, it is known that NH residents who received alcohol or drug treatment are often younger than 50 and may have comorbid conditions, such as HIV.⁵

To determine if these trends have continued in recent years, and whether there might be a relationship between the proportion of people with behavioral health disorders and younger age, we analyzed publicly available data from LTCFocus.org, provided by Brown University, funded in part by the National Institute on Aging (1P01AG027296). Our analysis included state-level averages for the age of the population, percentage younger than 65, and the prevalence of schizophrenia and bipolar disorder, which is the operationalization of serious mental illness (SMI) in the Minimum Data Set. To elucidate national trends, we collapsed the data to find the mean for each variable by the year, weighted by the total number of beds in each state. Statistical analyses were completed using Stata Statistical Software: Release 15.

To learn how these trends may affect patient care, and how NHs are responding to associated challenges, we conducted semi-structured interviews by telephone with 32 directors of nursing from 10 states. Interviews were audio-recorded and transcribed. A multidisciplinary team coded the transcripts using both a priori categories and domains derived from the interview guide questions, plus new codes that emerged from the elicited data. Both unexpected and anticipated findings resulted in patterns within and across interviews that were interpreted as themes.

The proportion of people in NHs diagnosed with schizophrenia or bipolar disorder increased from 6.5% in 2000 to 12.4% in 2017. The percentage of the NH population younger than 65 increased from 10.6% in 2000 to 16.2% in 2017, whereas the average age fell from 81.1 years to 78.8 years.

The prevalence of these characteristics varies among states. In 2015, prevalence of SMI ranged from 1% in Hawaii to 22% in Illinois. The percentage of the NH population younger than 65 ranged from 9% in South Dakota to 22% in Utah (see Figure 1). These variables were moderately correlated, R = 0.45.

Fig. 1.

Prevalence of diagnosis of schizophrenia or bipolar disorder in US NHs and percentage of residents younger than 65 in 2015, by state. R = 0.045.

Interview participants reported that these dramatic changes pose challenges to patient care, revealing difficulties when these populations are placed with the typical NH population of older residents, many with dementia. They may have care needs that NHs are often ill equipped to meet, and require additional resources for activities, level of independence, and nutrition that together pose logistical and care challenges. Although many residents did not need skilled nursing care, they had no appropriate discharge setting, and remained only for lack of an option in the community.

It has recently been reported that in some NHs people with dementia are inappropriately diagnosed with schizophrenia.⁶ This may contribute to the numbers we observed, but the state-level association with lower age is evidence that at least part of the trend is real, and the variation among states suggests that policy or resource availability may affect it. A study published in 2009 found that new NH admissions had a disproportionate prevalence of mental illness (MI) diagnoses, and that people with MI were younger and more likely to transition to long-term care.⁷ The mental health deinstitutionalization movement of the 1960s and 1970s resulted in a trend of people residing in NHs who previously would have been in psychiatric hospitals.⁸ This trend has continued relentlessly ever since.

A survey of Social Service Directors in 924 NHs found that those in homes with higher prevalence of SMI reported lower ability to intervene for resident aggression. More than one-fifth were not confident they could develop care plans for people with SMI.⁹ Altogether, there has been little research on the specific ramifications for patient care, or how care managers have responded.

More scrutiny of the implications of these changes is critically needed. The development and evaluation of interventions to improve the care of people with behavioral health needs in NHs while ameliorating negative impacts on other residents is crucial. Most importantly, the development and evaluation of alternatives to long-term residence in NHs for people with behavioral health needs who could be better served in less restrictive, and less expensive, community settings must become high priority.