Abstract
Background/Objectives:
Persons with Alzheimer’s disease and related dementias (ADRD) 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:
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 (Mini-Mental State Examination [MMSE], Functional Activities Questionnaire, Basic and Instrumental Activities of Daily Living scales, Cornell Scale for Depression and Dementia, Neuropsychiatric Inventory Questionnaire [NPI-Q] Severity) and caregiver (Modified Caregiver Strain Index, Patient Health Questionnaire-9, NPI-Q Distress, Dementia Burden Scale-Caregiver [DBS-CG]). 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 gender, higher baseline caregiver burden and caring for patients with fewer baseline depression symptoms were associated with caregiver improvement. Male caregiver gender, patients with fewer depression, 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.
Keywords: Alzheimer’s disease, dementia, caregiver burden, co-management, collaborative care
INTRODUCTION
The clinical manifestations of Alzheimer’s disease and related dementias (ADRD) are protean and devastating, including cognitive impairment, immobility and falls, swallowing disorders and aspiration pneumonia, and behavioral symptoms (e.g., agitation, aggression, and hallucinations). These sequelae often lead to caregiver stress, burnout, and medical illnesses. Thus, ADRD can be considered the archetype for a disorder with complex needs that span both the patient and caregiver, medical and social domains, and requires 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 health care systems and reach out to the communities,1, 2, 3, 4 whereas others have been based in the community and reach out to health care providers5 or have used both community- and health care-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 is a health system-based co-management model of nurse practitioners (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 care9 and Medicare costs.10 In this paper, we report 1-year patient and caregiver clinical outcomes and predictors of clinical benefit of the program.
METHODS
This study describes 1-year patient and caregiver outcomes for the first 1091 participants in the UCLA ADC; reports the percentages who demonstrated patient, caregiver, or either benefit; and identifies predictors of who benefits. The study was approved by the UCLA Institutional Review Board.
Participants-
Patients in the UCLA ADC were referred to the program by their primary care or specialist physicians who agreed to co-manage care with the DCMs. The only additional eligibility requirements were that they were UCLA patients and they did not live in a nursing home at the time of referral to the program.
Description of the program-
The UCLA ADC utilizes a NP DCM supervised by a physician dementia specialist to tailor and facilitate dementia care delivery in collaboration with the primary care physician (co-management). NPs can write orders, communicate directly through the electronic health record (EHR), and facilitate clinical care. Dementia care is based in the health care system, which partners with community-based organization s to provide comprehensive, coordinated, patient-centered care. Key components include:
Structured needs assessments of patients and their caregivers.
Creation and implementation of individualized dementia care plans
- Ongoing dementia care management by a DCM supervised by a physician dementia specialist including as needed:
- In-person sessions
- Telephone follow-up to monitor implementation of dementia care plans
- Teaching dementia management skills to caregivers
- Consultation with neurology, geriatric psychiatry, psychology, or geriatrics
- Caregiver support groups
- Caregiver education through a community lecture series
- Referral to community-based organizations for services (e.g., adult day care, counseling) as well as caregiver training, including vouchers, if needed, for temporary services
Monitoring and revising care plans, as needed, including active monitoring (a minimum of a phone call every 4 months) and support of caregivers
Access 24/7, 365 days a year for assistance and advice. Night, weekend, and holidays are covered by the UCLA geriatrician on call
Measures
Mini-Mental State Exam (MMSE) measures cognition with ranges from 0 to 30 with lower scores indicating greater cognitive impairment.11
Functional Activities Questionnaire (FAQ) measures functional status and ranges from 0 to 30 with higher scores indicating more functional dependence.12
Cornell Scale for Depression in Dementia is a 19-item validated tool used to assess depressive symptoms in patients with dementia. Scores range from 0–38 and a score of 11 or greater indicates probable depression.13
Functional status was measured using basic activities of daily living14 and instrumental activities of daily living scales15, which have been validated and are well-established in research and clinical use. We also administered the Functional Activities Questionnaire (FAQ), which measures functional status and ranges from 0 to 30 with higher scores indicating more functional dependence.16
Neuropsychiatric Inventory Questionnaire (NPI-Q).17 The NPI-Q is a validated survey that assesses the caregiver’s perception of the severity of 12 dementia-related psychiatric and behavioral symptoms and the level of distress experienced by the caregiver as a result of these symptoms. NPI-Q Severity score ranges from 0–36 and NPI-Q Distress score ranges from 0–60 with higher scores indicating more severe symptoms and distress, respectively. In a nursing home population, the minimal clinically important difference was determined to be 2.8–3.2 points for severity and 3.1–4.0 points for distress.18
Modified Caregiver Strain Index (MCSI)19 The MCSI is a 13-item validated tool used to assess severity of caregiver strain. The index targets financial, physical, psychological, and social aspects of strain and is scored from 0 to 26 with higher scores indicating greater levels of strain.
Patient Health Questionnaire-9 (PHQ-9)20 The PHQ-9 is a 9-item validated tool used to assess depressive symptoms in the caregiver using the DSM-IV criteria for major depression and is scored from 0–27 with scores >10 indicating moderate symptoms and scores >20 indicating severe depressive symptoms.
Dementia Burden Scale-Caregiver (DBS-CG)21 is a composite of the NPI-Q Distress, MCSI, and PHQ-9 scales with items transformed linearly to be on a 0–100 possible range and then averaged with higher scores indicating higher caregiver burden. The MCID for the DBS-CG is 5 points.
Definition of clinical benefit We captured benefit in two ways: 1) for those in the two worst tertiles at the baseline, improvement by the minimal clinically important difference over 1 year [yes/no] or 2) for those who were in the lowest symptom tertile at the baseline, by maintaining low symptoms at baseline and 1 year [yes/no] (Table 2). We measured patient symptoms using the NPI-Q Severity scale (the only patient outcome measure anticipated to benefit from the program) and caregiver symptoms using the DBS-CG scale. Benefit on the NPI-Q severity scale was defined as improving by at least 3 points, the minimal clinically important difference18 or having baseline and 1-year scores of ≤ 6 (the upper limit of the baseline tertile of fewest patient symptoms) (Supplemental Figure 1). DBS-CG benefit was defined as improving by at least 5 points, the minimal clinically important difference,21 or having baseline and 1-year scores of ≤ 18.8 (the upper limit of the baseline tertile of fewest caregiver symptoms) (Supplemental Figure 2). Defining benefit in this manner allowed us to capture both improvement (by the minimal clinically important difference or more) and maintaining low symptoms (baseline and 1-year symptoms are low).
Table 2.
Definitions of Clinical Benefit
| Symptom Improvement | Maintenance of Low Symptoms | |
|---|---|---|
| Patient | Improving by at least 3 points on the NPI-Q Severity scale (the minimal clinically important difference) | Lowest tertile of NPI-Q Severity scale (≤6) at baseline and 1 year |
| Caregiver | Improving by at least 5 points on the DBS-CG (the minimal clinically important difference) | Lowest tertile of DBS-CG (≤18.8) at baseline and 1 year |
DBS-CG=Dementia Burden Scale-Caregiver
Analyses
Baseline characteristics of the cohort who survived to 1 year, stratified by missing at Year 1, were described using proportions for categorical variables, and means with standard deviations (SDs) or medians with interquartile ranges (IQRs) for continuous variables. Differences between missing/not missing were tested using the χ2 test for categorical variables and student t-test or Wilcoxon test for continuous variables, depending on whether mean or median was reported. We used item-level data from FAQ, MMSE, Cornell, and IADLs to impute full predictor scales for patients who had at least 1 item on the scale. For missing outcomes, we required at least 1 item in the NPIQ-Severity scale and at least 1 item in each of the 3 component scales (NPIQ-Distress, PHQ-9, and MSCI) to impute DBS-CG scores.
One-year changes in NPIQ-Severity and DBS-CG among patients and caregivers were used to measure the benefit from the program. To adjust for the bias that could arise from systematic differences between complete cases and patients with missing data, we used inverse probability weighting (IPW).22 The estimated probability of being a complete case was calculated performing a logistic regression modeling missing patient or caregiver outcomes at year 1 [yes/no] adjusting for patient’s and caregiver’s baseline demographic and clinical characteristics. The predictors of being a complete case include patient’s age, gender, race, education, dementia type, MMSE category, and the tertiles of FAQ, Cornell and NPIQ-severity, and the caregiver’s gender, relation to patient and the tertile of MCSI, PHQ9 and NPIQ-distress; the tertiles were modeled as continuous variables (test of trend). We examined the distribution of the estimated inverse probability of being a complete case and there were no influential weights.
Continuous outcomes were modeled performing IPW linear regression. For binary outcomes, we used IPW univariable and multivariable logistic regressions to calculate unadjusted and adjusted ORs and their 95% Confidence Intervals (CIs), respectively. To model clinical benefit (improving [yes/no] by the minimal clinically important difference or maintaining low symptoms [yes/no]), for patients and caregivers, we included predictors that were significant in univariable logistic regressions plus the clinically relevant covariates. As a sensitivity analysis, all of the models were redone without applying IPW.
All tests were two sided, and P-values less than 0.05 were considered statistically significant. Analyses were performed using SAS version 9.4 (SAS Institute Inc, Cary, NC).
RESULTS
From July 1, 2012 to December 2014, 1091 patients and their caregivers entered the program, 991 patients survived for at least 1year in the program and 554 (56%) patients and 469 (47%) caregivers had completed outcome measures at year 1. Loss to follow-up at year 1 included 247 patient-caregiver dyads who were not actively involved in the program due to relocation, change in eligibility (e.g., living in a nursing home or enrolled in hospice), or failing to respond to program outreach efforts as well as 190 patients and 275 caregivers who remained in the program but did not complete 1-year surveys. Baseline sociodemographic characteristics of patients and their caregivers with outcomes data were similar to the sample missing outcomes but had slightly better baseline scores on the Functional Activities Questionnaire, Cornell Scale for Depression in Dementia and both subscales of the NPI-Q that were statistically, though not clinically, significant (Table 1).
Table 1:
Patient and Caregiver Baseline Characteristics of Cohort, those completing 1-year outcomes, and those missing 1-year outcomes
| Patient Characteristics | Entire Cohort N=991 |
Completed year-1 outcome N=554 (56%) |
Missing year-1 outcome N=437 (44%) |
p-value* |
|---|---|---|---|---|
| Age, mean (SD), range (years) | 81.9 (8.8), 40–101 | 82.3 (8.6), 53–101 | 81.5 (9.1) 40 – 101 | 0.148 |
| Female, N (%) | 669 (68%) | 375 (68%) | 294 (67%) | 0.891 |
| 64 (7%) | ||||
| Primary language not English, N (%) | 169 (18%) | 86 (16%) | 83 (20%) | 0.105 |
| Number (%) with college or higher education | 421 (44%) | 249 (46%) | 172 (41%) | 0.150 |
| Medicare and Medicaid dually insured, N (%) | 115 (12%) | 57 (10%) | 58 (13%) | 0.310 |
| Alzheimer’s, mixed vascular and Alzheimer’s, or unspecified type of dementia, N (%) | 881 (90%) | 492 (89%) | 389 (90%) | 0.681 |
| Functional Activities Questionnaire (FAQ), mean (SD) | 20.8 (8.2) | 20.3 (8.2) | 21.5 (8.2) | 0.027 |
| ADLs performed independently, median (IQR), range 0–5 | 4 (1, 6) | 4 (1, 6) | 3 (1, 5) | 0.440 |
| IADLs performed independently, median (IQR), range 0–7 | 0 (0, 1) | 0 (0, 1) | 0 (0, 1) | 0.169 |
| Mini Mental State Exam, mean (SD), range 0–30 | 17.5 (7.0) | 17.8 (7.0) | 17.2(7.0) | 0.165 |
| Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity, mean (SD) | 9.9 (6.9) | 9.2(6.4) | 10.7 (7.4) | <0.001 |
| Cornell Depression in Dementia, mean (SD) | 9.7 (6.1) | 9.2 (5.4) | 10.4 (6.2) | 0.005 |
| Caregiver Characteristics | Completed year-1 outcome N=469 (47%) |
Missing year-1 outcome N=522 (53%) |
||
| Female, N (%) | 655 (67%) | 309 (65%) | 346 (68%) | 0.402 |
| - Other | 150 (15%) | 90 (18%) | 60 (13%) | |
| Neuropsychiatric Inventory Questionnaire (NPI-Q) Distress, mean (SD) | 12.2(10.1) | 11.5 (9.4) | 12.9 (10.6) | 0.045 |
| Modified Caregiver Strain Index (MCSI,) mean (SD) | 10.6 (6.7) | 10.4 (6.3) | 10.9(6.9) | 0.302 |
| Patient Health Questionnaire (PHQ)-9, mean (SD) | 4.6 (4.8) | 4.5 (4.8) | 4.6 (4.8) | 0.654 |
| DBS-CG, range 0 – 100 | 27.6 (17.1) | 26.8 (16.1) | 28.4 (17.9) | 0.151 |
P-values reported comparing baseline characteristics of patients and caregivers with and without the year-1 outcome:
Chi-square test of association was performed for categorical outcomes
Student t-test or Wilcoxon test were performed to compare means and medians, respectively
ADL = Activities of Daily Living
IADL = Instrumental Activities of Daily Living
After 1 year in the program, patients’ cognition (MMSE) and functional status (FAQ) worsened but behavioral and psychological symptoms (NPI-Q Severity) and depressive symptoms (Cornell) improved (Figure 1a). At 1 year, all caregiver outcomes improved significantly (Figure 1b). In multivariable linear regression models (Table 3), the only predictor of patient change on NPI-Q Severity scale was baseline caregiver NPI-Q Distress score (worse baseline scores predicted better 1-year scores). Predictors of caregiver change scores on the NPI-Q Distress scale included baseline NPI-Q Severity and baseline MCSI (worse baseline scores predicted better 1-year scores). Predictors of change scores on MCSI were black race (predicted better 1-year score vs. white race) and functional status measured by FAQ (worse baseline scores predicted better 1-year scores). Predictors of PHQ-9 improvement were child caregiver (predicted better 1-year score vs. spouse) and baseline MCSI (worse baseline scores predicted better 1-year scores).
Figure 1.
Baseline and 1-year Patient and Caregiver Outcomes Measures
1a. Patient Outcome Measures
Footnote:
FAQ=Functional Activities Questionnaire
Cornell=Cornell Scale for Depression and Dementia
MMSE=Mini-mental State Examination
NPI-Q Severity=Neuropsychiatric
1b. Caregiver Outcome Measures
Footnote:
DBS-CG=Dementia Burden Scale-Caregiver
MCSI=Modified Caregiver Strain Index
NPI-Q Distress=Neuropsychiatric
Inventory Questionnaire Distress
PHQ-9= Patient Health Questionnaire-9
Table 3.
Adjusted predictors of One-Year Changes Scores for NPI-Q, Severity and Distress, MCSI, and PHQ-9
| Year 1 Change Patient | Year 1 Change Caregiver | |||
|---|---|---|---|---|
| Independent Variables | NPI-Q Severity | MCSI | PHQ9 | NPI-Q Distress |
| Age | 0.01 (−0.06 , 0.08) | 0.01 (−0.06 , 0.08) | 0.02 (−0.03 , 0.08) | 0.04 (−0.06 , 0.14) |
| Patient male | −0.44 (−1.83 , 0.96) | 0.69 (−0.77 , 2.15) | −0.3 (−1.51 , 0.92) | −0.77 (−2.86 , 1.32) |
| Caregiver male | 1.03 (−0.30 , 2.37) | 0.74 (−0.66 , 2.15) | 0.62 (−0.54 , 1.79) | 1.75 (−0.26 , 3.76) |
| College graduate vs. less than college | −0.04 (−1.28 , 1.21) | 0.31 (−0.98 , 1.6) | −0.4 (−1.47 , 0.67) | −0.52 (−2.36 , 1.32) |
| Alzheimer’s, Mixed, or Unspecified Dementia type | −0.76 (−2.62 , 1.11) | 0.39 (−1.59 , 2.36) | 0.16 (−1.49 , 1.82) | 1.86 (−1.13 , 4.85) |
| Race | ||||
| Black vs. White | −1.19 (−3.28 , 0.89) | −2.58 (−4.69 , −0.48)* | −0.44 (−2.19 , 1.3) | −1.93 (−4.94 , 1.08) |
| Hispanic vs. White | −0.68 (−2.57 , 1.21) | 0.23 (−1.75 , 2.21) | 0.46 (−1.19 , 2.1) | 1.11 (−1.72 , 3.94) |
| Other vs. White | −0.64 (−3.00 , 1.73) | 0.83 (−1.64 , 3.29) | 1.8 (−0.26 , 3.86) | −0.16 (−3.69 , 3.38) |
| Caregiver Relation | ||||
| Child vs. Spouse | 0.98 (−0.48 , 2.44) | −0.86 (−2.37 , 0.65) | −1.42 (−2.68 , −0.16)* | −0.72 (−2.88 , 1.44) |
| Other vs. spouse | 0.00 (−1.91 , 1.91) | −0.12 (−2.14 , 1.9) | −0.34 (−2.01 , 1.33) | 0.29 (−2.6 , 3.19) |
| MMSE Category baseline | −0.03 (−1.03 , 0.98) | −0.05 (−1.08 , 0.99) | 0.27 (−0.59 , 1.13) | 0.22 (−1.25 , 1.69) |
| FAQ tertile baseline | −0.62 (−1.50 , 0.26) | −1.4 (−2.31 , −0.49)** | −0.6 (−1.38 , 0.17) | −0.19 (−1.51 , 1.13) |
| Cornell tertile baseline | 0.95 (0.15 , 1.74)* | 0.01 (−0.83 , 0.86) | −0.07 (−0.78 , 0.64) | 1.07 (−0.15 , 2.28) |
| NPI-Q Severity tertile baseline | −1.12 (−2.47 , 0.23) | −0.14 (−1.27 , 0.98) | −5.19 (−6.48 , −3.89)*** | |
| Baseline MCSI tertile | −0.86 (−1.72 , −0.01)* | −0.89 (−1.64 , −0.14)* | −1.77 (−3.05 , −0.48)** | |
| PHQ-9 baseline tertile | 0.09 (−0.63 , 0.81) | −0.19 (−1.56 , 1.17) | 0.24 (−0.84 , 1.31) | |
| Baseline NPI-Q Distress tertile | −3.85 (−4.73 , −2.98)*** | −0.29 (−1.03 , 0.44) | −0.13 (−1.28 , 1.03) | |
FAQ=Functional Activities Questionnaire, Cornell=Cornell Scale for Depression in Dementia, MCSI=Modified Caregiver Strain Index, MMSE=Mini-mental State Examination, NPI-Q Severity=Neuropsychiatric Inventory Questionnaire Severity scale, DBS-CG=Dementia Burden Scale-Caregiver, PHQ-9= Patient Health Questionnaire-9
An increase in tertile (lowest to middle tertile or middle to highest tertile) is associated with the reported change.
p<0.05
p<.01,
p<0.001,
Using the above definitions of clinical benefit (Table 2), 314/543 (58%) of patients and 282/447 (63%) of caregivers demonstrated benefit at 1 year. When considering benefit as for either the patient, the caregiver, or both, 376/501 (75%) demonstrated benefit at 1 year. Among patients who derived benefit at 1 year, 188/314 (60%) was symptom improvement and 127/314 (40%) was maintaining low symptoms. Among caregivers who benefited at 1 year, 176/282 (62%) was by improving symptoms and 106/282 (38%) was maintaining low symptoms.
Unadjusted bivariate baseline predictors of 1-year clinical benefit are presented in Supplemental Table 1. In adjusted multivariable models (Table 4), at 1 year, patients who had more behavioral symptoms at baseline and fewer depression symptoms were more likely to improve and those with fewer baseline depression symptoms were more likely to maintain low behavioral symptoms. Being a male caregiver, caring for a patient with fewer depressive symptoms, and higher baseline caregiver burden were associated with caregiver improvement. Being a male caregiver and more baseline patient functional impairment, fewer patient depressive symptoms, and fewer patient behavioral symptoms were associated with caregivers who were more likely to maintain low burden at 1 year.
Table 4.
Odds Ratio (OR) and 95% Confidence Interval (CI) from multivariable adjusted logistic regressions for patient and caregiver benefit at year 1
| Patient Benefit (NPI-Q Severity) | Caregiver Benefit (DBS-CG) | ||||
|---|---|---|---|---|---|
| Variables | Symptom Improvement | Maintaining Low Symptoms | Variables | Symptom Improvement | Maintaining Low Symptoms |
| Caregiver Male | 1.29 (0.86 , 1.93) | 1.11 (0.62 , 2.01) | Caregiver Male | 3.01 (1.86 , 4.88)*** | 2.15 (1.11 , 4.16)* |
| MMSE tertile | 1.23 (0.91 , 1.65) | 0.79 (0.5 , 1.26) | MMSE tertile | 0.87 (0.64 , 1.2) | 1.02 (0.61 , 1.71) |
| FAQ tertile | 1.18 (0.92 , 1.52) | 0.81 (0.52 , 1.24) | FAQ tertile | 1.2 (0.9 , 1.59) | 1.64 (1.03 , 2.6)* |
| Cornell tertile | 0.75 (0.58 , 0.95)* | 0.49 (0.35 , 0.7)*** | Cornell tertile | 0.61 (0.46 , 0.81)*** | 0.53 (0.36 , 0.78)* |
| NPIQ Severity tertile [13 – 36] vs [6 – 13) | 4.32 (2.9 , 6.43)*** | NPIQ Severity tertile | 1.29 (0.97 , 1.7) | 0.54 (0.32 , 0.92)* | |
| DBS-CG tertile | 1.19 (0.92 , 1.53) | 0.97 (0.7 , 1.33) | DBS-CG tertile [27 – 100] vs [18.8 – 27) | 3.26 (2.06 , 5.16)*** | |
An increase in tertile (lowest to middle tertile or middle to highest tertile) is associated with the reported Odds Ratio.
FAQ=Functional Activities Questionnaire
Cornell=Cornell Scale for Depression in Dementia
NPI-Q Severity=Neuropsychiatric Inventory Questionnaire Severity Scale
DBS-CG=Dementia Burden Scale-Caregiver
In the sensitivity analyses using unweighted multivariable logistic models (Supplemental Table 2), the magnitude and direction of all the point estimates were similar to IPW models; however, a few of the predictors were no longer statistically significant, plausibly due to reduced power. Specifically, patient depressive symptoms were not statistically significant predicting patient improvement; and in the model predicting caregiver maintaining low symptoms, caregiver gender, functional impairment, and patient behavioral symptoms were no longer statistically significant.
DISCUSSION
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 maintaining low symptoms and slightly less than half benefited by improvement of symptoms by at least the established minimal clinically important differences of the clinical symptom scales. Thus, the program may benefit patient-caregiver dyads by both improvement of symptoms and maintaining low symptoms.
Persons with ADRD who had worse behavioral symptoms were more likely to improve suggesting that the delivery of high quality dementia care9 and caregiver education and support23 were beneficial in managing these symptoms. Caregivers who had more burden (a composite of distress, strain, and depression symptoms) benefited in a progressive manner (i.e., 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 (e.g., 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 upon and extends previous clinical trial data3 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 setting4, 24 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 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.25 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.26 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 this 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, 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 either patient and/or caregiver clinical benefit. Although clinical trial data are not yet available, ADRD co-management 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.
Supplementary Material
Supplementary Figure S1-Patient clinical benefit
Footnote: Patients who benefitted are in blue shaded area, either because of improvement of at least the minimal clinically important difference (right of the diagonal) or maintenance of low symptoms at baseline and 1 year (below horizontal line)
Supplementary Figure S2-Caregiver clinical benefit
Footnote: Caregivers who benefitted are in blue shaded area, either because of improvement of at least the minimal clinically important difference (right of the diagonal) or maintenance of low symptoms at baseline and 1 year (below horizontal line)
Acknowledgments
Support: Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under Award Numbers R21AG054681 and P30AG028748 and the NIH/National Center for Advancing Translational Science (NCATS) UCLA CTSI Grant Number UL1TR000124, The Commonwealth Fund, a national, private foundation based in New York City that supports independent research on health care issues and makes grants to improve health care practice and policy and the Centers for Medicare & Medicaid Services under contract number HHSM 500-2011-00002I Task Order HHSM-500-T0009.
Footnotes
This research was presented at the 2019 Annual Meeting of the American Geriatrics Society on May 2, 2019 in Portland, OR.
Disclaimers: The views expressed in this article are the authors’ and do not necessarily represent the views of the Centers of Medicare & Medicaid Services, the U.S Department of Health and Human Services the National Institutes of Health, or The Commonwealth Fund, its directors, officers, or staff. The funders had no role in the in study design, data collection, analysis and interpretation of data, writing of the report, or in the decision to submit the article for publication.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Supplementary Figure S1-Patient clinical benefit
Footnote: Patients who benefitted are in blue shaded area, either because of improvement of at least the minimal clinically important difference (right of the diagonal) or maintenance of low symptoms at baseline and 1 year (below horizontal line)
Supplementary Figure S2-Caregiver clinical benefit
Footnote: Caregivers who benefitted are in blue shaded area, either because of improvement of at least the minimal clinically important difference (right of the diagonal) or maintenance of low symptoms at baseline and 1 year (below horizontal line)