Patient and Caregiver Benefit From a Comprehensive Dementia Care Program: 1‐Year Results From the UCLA Alzheimer's and Dementia Care Program

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. J Am Geriatr Soc 67:2267–2273, 2019

2020 Alzheimer's disease facts and figures

“…Other models include addressing the needs of family caregivers simultaneously with comprehensive disease management of people living with dementia to improve the quality of life of both 498 . Several evaluations have suggested that such approaches have considerable potential for improving outcomes for people with dementia and their family caregivers (for example, delayed nursing home admission and reduction in caregiver distress) 499‐508 . Current research is attempting to determine the feasibility of these models beyond the specialty settings in which they currently operate 509‐512 …”

“…In the UCLA Alzheimer's and Dementia Care Program, dementia care management is provided by a nurse practitioner supervised by a primary care physician. After one year in the program, 58% of people living with dementia and 63% of their caregivers showed clinical benefit on validated instruments, 508 and the gross savings to Medicare on an annual basis totaled $2,404 per patient per year 585 . A similar collaborative care model in Indiana, the Healthy Aging Brain Center (HABC), resulted in gross savings of $3,474 per patient per year 502 .…”

“…498 Several evaluations have suggested that such approaches have considerable potential for improving outcomes for people with dementia and their family caregivers (for example, delayed nursing home admission and reduction in caregiver distress). [499][500][501][502][503][504][505][506][507][508] Current research is attempting to determine the feasibility of these models beyond the specialty settings in which they currently operate. [509][510][511][512] In 2016, the National Academies of Sciences, Engineering, and Medicine released Families Caring for an Aging America, a seminal report that includes a number of recommendations to refocus national health care reform efforts from models of care that center on the patient (person-centered care) to models of care that also explicitly engage and support the patient's family (family-centered care).…”

The Neuropsychiatric Inventory: Development and Applications

“…107 A comprehensive dementia care management program using nurse practitioners to administer the care was associated with improved NPI-Q scores. 108 Caregiver education programs have also been shown to result in improved patient behavior as measured by the NPI-Q. 109…”

Recommendations to Improve Payment Policies for Comprehensive Dementia Care

“…22 In a large case series and cost comparisons with a matched control group, the program has demonstrated high quality, 23 reduced total Medicare costs, decreased nursing home placement compared with matched patients, 9 improved end-of-life care, 24 and improved patient and caregiver outcomes. 25 • The Integrated Memory Care Clinic is an patientcentered medical home led by advance practice nurses for persons with dementia and mild cognitive impairment that provides comprehensive primary and dementia care. 26 It was shown to provide high-quality care and is associated with low ED utilization and low rates of ambulatory-sensitive hospitalizations.…”