Patient and Caregiver Benefit From a Comprehensive Dementia Care Program

1-Year Results From the UCLA Alzheimer's and Dementia Care Program

David B. Reuben, MD, AGSF; Zaldy S. Tan, MD, MPH; Tahmineh Romero, MS; Neil S. Wenger, MD, MPH; Emmett Keeler, PhD; Lee A. Jennings, MD, MSHS


J Am Geriatr Soc. 2019;67(7):2267-2273. 

In This Article


Despite progression of cognitive and functional decline, most patients and caregivers participating in a health system-based comprehensive ADRD care program demonstrated clinical benefit at 1 year. Slightly more than half of patients and caregivers benefited by improvement of symptoms by at least the establishedminimal clinically important differences of the clinical symptom scales, and slightly less than half benefited by maintaining low symptoms. Thus, the program may benefit patient-caregiver dyads by both improvement of symptoms and maintenance of low symptoms.

Persons with ADRD who had worse behavioral symptoms were more likely to improve, suggesting that the delivery of high-quality dementia care[9] and caregiver education and support[22] were beneficial in managing these symptoms. Caregivers who had more burden (a composite of distress, strain, and depression symptoms) benefited in a progressive manner (ie, those with the worst tertile of symptoms benefited more than those in the middle tertile), suggesting the importance of specific interventions aimed at caregivers. Unexpectedly, we found that male caregivers were also more likely to benefit. Although our data cannot provide an explanation for this finding, perhaps because of cultural norms (eg, caregiving provided more often by women), men may have had less experience in this role and benefitted more from teaching and support.

This research builds on and extends previous clinical trial data[3] conducted at Indiana University's affiliated urban health system, serving medically indigent patients, and a Veterans Affairs hospital. This study confirms that similar benefits on patient psychological and behavioral symptoms and caregiver distress can occur when implemented in a predominantly fee-for-service Medicare practice setting[4,23] in a competitive practice environment outside the context of a clinical trial. Moreover, we were able to use minimal clinically important differences, which were not available at the time of the Indiana trial, to classify individual patients as having clinical benefit. Finally, as a result of the larger sample size, we were able to identify predictors of benefit that can be used to prioritize patients when resources are limited.

These findings must be considered in light of the study's limitations. The UCLA ADC Program is a clinical program, and the evaluation did not follow a rigorous controlled trial research design. Rather, an observational design with assessments at the time of enrollment and 1 year later was employed. Accordingly, the maintenance of low symptoms or improvement of symptoms could have been a reflection of the natural history of ADRD in a subset of patients and unaffected by the program. However, randomized trial data have demonstrated that patients receiving usual care show deterioration on many of the same measures,[3] providing support that the improvements were a true effect. In addition, the decline in cognitive status on the MMSE in the program is consistent with published rates of decline.[24] The discordance between decline on a clinical measure that would not be expected to improve by the intervention (MMSE) and improvement on measures that would be expected to improve (NPI-Q Severity and Distress, MCSI, PHQ-9, and DBS-CG) also supports the validity of the findings. A second limitation was loss to follow-up was larger than would be expected in a clinical trial. Because of the clinical characteristics of ADRD and associated caregiver strain, follow-up rates tend to be lower. For example, only 67% of participants in the National Alzheimer's Coordinating Center Uniform Data Set had more than one visit.[25] Nevertheless, sociodemographic and clinical characteristics of those who had and who were missing 1-year outcomes were similar. We performed inverse proportional weighting to adjust for the high rates of loss to follow-up and conducted sensitivity analyses without applying weighting. The results of these sensitivity analyses were similar to models with weighting. Finally, the program was implemented at one site, and it is unknown whether replication sites would achieve the same findings. Yet, the implementation of the program was pragmatic and integrated into real-world clinical practice.

In summary, the UCLA ADC Program, a health system-based comprehensive dementia care program, was associated with improved scores on measures of patient and caregiver symptoms. Three-fourths of patient-caregiver dyads had patient and/or caregiver clinical benefit. Although clinical trial data are not yet available, ADRD comanagement by NPs may be a model for providing dementia care that meets the triple aim of quality care, lower-cost expenditures, and better clinical outcomes.