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

Disclosures

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

In This Article

Abstract and Introduction

Abstract

Background/Objectives: Persons with Alzheimer disease and related dementias (ADRDs) require comprehensive care that spans health systems and community-based organizations. This study examined the clinical outcomes of a comprehensive dementia care program and identified subgroups who were more likely to benefit.

Design: Observational, baseline and 1 year after intervention.

Setting: Urban, academic medical center.

Participants: A total of 554 persons with dementia and their caregivers who had 1-year follow-up evaluations and data on clinical outcomes.

Intervention: Health system-based comprehensive dementia care management program using nurse practitioner dementia care managers.

Measurements: Patient measures included the Mini-Mental State Examination (MMSE), the Functional Activities Questionnaire, Basic and Instrumental Activities of Daily Living scales, the Cornell Scale for Depression in Dementia, and the Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity. Caregiver measures included the Modified Caregiver Strain Index, the Patient Health Questionnaire-9, NPI-Q Distress, and the Dementia Burden Scale-Caregiver). We used established minimal clinically important differences and lowest tertiles of baseline symptoms to define improving symptoms and maintaining low symptoms as clinical benefit for patients and caregivers.

Results: At year 1, persons with ADRD improved on all scales, except MMSE and functional status measures; caregivers improved on all scales. Using validated instruments, 314/543 (58%) of patients, 282/447 (63%) of caregivers, and 376/501 (75%) of patients or caregivers demonstrated clinical benefit. In adjusted multivariate models, at year 1, more behavioral symptoms and fewer depression symptoms at baseline were associated with patient improvement; and fewer baseline depression symptoms were associated with maintaining low behavioral symptoms. Male caregiver sex, higher baseline caregiver burden, and caring for patients with fewer baseline depression symptoms were associated with caregiver improvement. Male caregiver sex and patients with fewer depression symptoms, fewer behavioral symptoms, and more functional impairment at baseline were associated with caregivers maintaining low burden at 1 year.

Conclusions: Health system-based comprehensive dementia care management is a promising approach to improving clinical outcomes, with benefits for both patients and caregivers

Introduction

The clinical manifestations of Alzheimer disease and related dementias (ADRDs) are protean and devastating, including cognitive impairment, immobility and falls, swallowing disorders and aspiration pneumonia, and behavioral symptoms (eg, agitation, aggression, and hallucinations). These sequelae often lead to caregiver stress, burnout, and medical illnesses. Thus, ADRDs can be considered the archetype for a disorder with complex needs that span both the patient and caregiver, include medical and social domains, and require health system and community-based interventions.

In response, several dementia care programs have been developed to comprehensively meet the needs of patients and their caregivers. Some have been based within healthcare systems and reach out to the communities,[1–4] whereas others have been based in the community and reach out to healthcare providers[5] or have used both community- and healthcare-based care managers.[6,7] The UCLA Alzheimer's and Dementia Care (ADC) Program, which adapted elements from an evidence-based collaborative ADRD care model,[2,3] was fully implemented in July 2012 and has cared for over 2600 patients and caregivers since that time. The UCLA ADC Program is a health system-based comanagement model of nurse practitioner (NP) dementia care managers (DCMs) working with primary care and specialty physicians.[4]

Increasingly, clinical programs are being evaluated on their ability to meet the triple aim of better care, better health, and lower costs.[8] We have previously reported the effect of the UCLA ADC Program on the quality of dementia care[9] and Medicare costs.[10] In this article, we report 1-year patient and caregiver clinical outcomes and predictors of clinical benefit of the program.

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