Quality of Care Provided by a Comprehensive Dementia Care Co-management Program

Abstract

Multiple studies have shown that quality of care for dementia in primary care is poor with physician adherence to dementia quality indicators (QIs) ranging from 18-42%. In response, the University of California, Los Angeles Health System created the UCLA Alzheimer’s and Dementia Care (ADC) Program, a quality improvement program that uses a co-management model with a nurse practitioner dementia care manager (DCM) working with primary care physicians and community-based organizations to provide comprehensive dementia care. Our objective was to measure the quality of dementia care provided by nurse practitioner DCMs using the Assessing Care of Vulnerable Elders (ACOVE-3) and Physician Consortium for Performance Improvement QIs.

Participants included 797 community-dwelling adults with dementia referred to the UCLA ADC program over a two-year period. UCLA is an urban academic medical center with primarily fee-for-service reimbursement. We measured the percentage of recommended care received for 17 dementia QIs. The primary outcome was aggregate quality of care for the UCLA ADC cohort calculated as the total number of recommended care processes received divided by the total number of eligible quality indicators. Secondary outcomes included aggregate quality of care in three domains of dementia care: assessment and screening (7 QIs), treatment (6 QIs), and counseling (4 QIs). QIs were abstracted from DCM notes over a three-month period from date of initial assessment.

Patients were eligible for 9,895 QIs, of which 92% were passed. Overall pass-rates among DCMs were similar (range 90% to 96%). All counseling and assessment QIs had pass-rates >80% with most exceeding 90%. Wider variation in adherence was found among QIs addressing treatments for dementia, which were triggered by patient-specific criteria, ranging from 27% for discontinuation of medications associated with mental status changes to 86% for discussion about acetylcholinesterase inhibitors.

Comprehensive dementia care co-management with a nurse practitioner can result in very high quality of care for dementia, especially for assessment, screening and counseling. The effect on treatment QIs is more variable but higher than previous reports of physician-provided dementia care.

INTRODUCTION

Dementia is a common and costly disease, with an estimated 5.3 million Americans living with Alzheimer’s disease and spending $214 billion on dementia-related care in 2014.¹ People living with dementia have three times as many hospital stays as others their age, many of which are for ambulatory-care sensitive conditions.^1-3 Dementia care requires high quality, well-integrated medical and social services to achieve better health outcomes and prevent unnecessary acute care visits; however, multiple studies have demonstrated poor quality of care for dementia in primary care practice settings with physician adherence to quality indicators ranging from 18-42%.^4-10

Multicomponent practice-change interventions,^{5, 7-9, 11-13} including nurse practitioner co-management for geriatric conditions,^{8, 9, 12} have improved quality of care for dementia. However, even with the most successful interventions, nearly 40% of quality indicators for dementia remained unmet.^{8, 9, 11, 12} Health system partnerships with organizations that provide community resources for dementia (e.g., the Alzheimer’s Association) have also improved the quality of dementia care;^{7, 14, 15} however, these organizations are generally not well integrated with the health care system and are often underutilized.

To improve dementia-related care and better meet needs of patients and caregivers, dementia disease management programs have been developed.^{11-13, 16-18} These programs have demonstrated effectiveness based on quality measure performance^{11, 18} and patient outcomes, including reduced behavioral symptoms and caregiver stress and fewer emergency department visits, hospitalizations, and 30-day hospital readmissions^11-13 in special populations (e.g., safety net health system). The UCLA Alzheimer’s and Dementia Care (ADC) program, launched in July 2012, has built on previous successes at other institutions and adapted them to a university-based health care system in a competitive fee-for-service environment similar to most primary care settings in the US. The UCLA ADC program uses a co-management model with a nurse practitioner dementia care manager (DCM) partnering with primary care physicians and community-based organizations to provide comprehensive, coordinated dementia care. Services include an individualized assessment of the needs of the patient and family, ongoing management of the complications of dementia, linkage to community-based resources, including caregiver support and training and respite care, advance care planning, and access twenty-four hours, seven days a week to a dementia health care professional.^{19, 20}

Patients are referred to the program predominantly by UCLA primary care physicians who partner with DCMs in providing dementia-related care. Patients and their caregivers receive a ninety-minute in-person initial assessment and an individualized written care plan covering medical, behavioral, psychosocial, and advance care planning needs. Patients and caregivers are also provided educational materials tailored to their specific needs, including printed materials and online resources, such as training videos addressing common dementia-related behavioral problems. Caregivers and patients also have frequent telephone follow-up with their DCM depending on the severity of needs. At a minimum, they are telephoned every three months and those who are in crisis may receive daily calls. All patients are asked to return for an in-person follow-up visit or offered a home visit at least annually. Eight community-based organizations specializing in dementia-related services partner with the UCLA ADC Program, and participants are linked to appropriate community-resources, including caregiver support groups, individualized counseling, caregiver training programs, adult day care services, or intensive case management, among others. Patients are followed by their DCM throughout their disease course until death or if they leave the geographic area or choose to disenroll.

The nurse practitioner DCMs have both geriatric and dementia-content expertise. They make medical recommendations for primary care physicians, including starting or adjusting medications for dementia and depression, and often prescribe and titrate these medications in collaboration with primary care providers. They recommend specialty referral to neurology or psychiatry when appropriate. When program participants are hospitalized or admitted to a nursing home, DCMs communicate with acute or sub-acute care physicians, especially to assist with goals-of-care discussions and transitions of care. Lastly, as DCMs are familiar with both the health care system and community resources for dementia, they serve as a link between these two sources of care, facilitating communication about the patient’s and caregiver’s needs and coordinating services.

For the UCLA ADC program to achieve the anticipated outcomes of better health and lower costs, high quality of care must be provided. We performed chart reviews on the first 797 patients enrolled in the UCLA ADC to assess the quality of dementia care provided by nurse practitioner dementia care managers.

METHODS

From July 1, 2012 to July 31, 2014, 797 community-dwelling adults with dementia received care in the UCLA ADC program. For each patient, we measured the percentage of recommended care received for 17 dementia quality indicators from the Assessing Care of Vulnerable Elders (ACOVE-3)²¹ and Physician Consortium for Performance Improvement (PCPI)²² quality indicator sets. Data for scoring quality indicators were abstracted from dementia care manager notes in the medical record over a three-month period from date of initial assessment. The UCLA Institutional Review Board approved the study protocol.

Study population

To participate in the UCLA ADC program, enrollees must have a diagnosis of dementia, be referred by a UCLA provider, and be community-dwelling at the time of program enrollment. UCLA is an urban academic medical center with primarily fee-for-service reimbursement that serves west Los Angeles and the surrounding communities.

Data collection

Data were abstracted from dementia care manager notes during the first three months of each patient’s enrollment in the program, including an initial evaluation note and any follow-up visits, telephone or electronic mail encounters, goals-of-care notes, and any correspondence with the referring provider documented in the medical record. Six physicians (internal medicine residents or geriatric fellows) and one medical student performed medical record abstractions. Abstractors were provided with a detailed chart abstraction instrument and written abstraction guidelines and were trained by an experienced nurse abstractor (CR) who has conducted similar medical record abstractions using the ACOVE quality indicators.^4-9 The nurse trainer (CR) and two other study investigators (LJ and EC) also provided consultation for abstractors as needed. For each quality indicator, the abstractor assessed if the patient was eligible for a particular care process and if the recommended care was provided within the abstraction window (first three months of program enrollment). A 10% random sample of all records was re-abstracted to evaluate the reliability of the abstraction process. Overall, 96% of all quality indicators had identical eligibility in abstracted and re-abstracted charts. Among eligible quality indicators, 91% had identical quality indicator scores in the abstracted and re-abstracted records.

Measures and Statistical Analysis

The methods for developing the ACOVE and PCPI dementia quality indicators have been described in detail elsewhere,^{21, 22} and the ACOVE quality indicators have been used in several prior studies to measure the quality of care for dementia.^4-9 The ten PCPI and fifteen ACOVE-3 quality indictors (QIs) for dementia were combined, resulting in seventeen QIs that fall within three domains of dementia care: assessment and screening (7 QIs), treatment (6 QIs), and counseling (4 QIs). (Table 2)

Table 2. Adherence to ACOVE-3 and PCPI Quality Indicators for Dementia, N=797.

Dementia QI (ACOVE-3 and PCPI)	N Passed/ N Eligible (%)
Domain: Assessment and screening	5291/5574 (95)
Annual assessment of cognition	747/793 (94)
Staging of dementia	733/797 (92)
Annual evaluation of function	770/797 (97)
Labs performed (TSH, B12, and HIV/STS testing if risk factors)	666/797 (84)
Depression screening	793/796 (99)
Annual screen for behavioral symptoms	787/797 (99)
Annual medication review	795/797 (99)
Domain: Counseling	3084/3186 (97)
Caregiver counseled in at least 2 domains:	789/797 (99)
Dementia diagnosis, prognosis or behavioral symptoms	754/797 (95)
Safety	755/797 (95)
Community resources	784/797 (98)
Counseled regarding driving	740/795 (93)
Counseled about advance care planning or palliative care	784/797 (98)
Identification of a surrogate decision maker	771/797 (97)
Domain: Treatment	842/1222 (69)
Discussion about acetylcholinesterase inhibitors	325/381 (85)
Received CVA prophylaxis, if indicated	67/93 (72)
Treatment with behavioral interventions first or concurrently with medications	369/539 (68)
Assessed response to new medication for dementia or depression	41/67 (61)
Risks/benefits discussion documented for new antipsychotics	5/10 (50)
Discontinue or justify medications associated with mental status changes	35/132 (27)
Overall QI pass-rate	9217/9982 (92)

For each quality indicator triggered by a patient, a pass or fail score was assigned based on whether the recommended care was provided. Credit was conferred if the dementia care manager offered a treatment, and it was refused by the patient or caregiver. Two quality indicators (discussion about acetylcholinesterase inhibitors and receipt of stroke prophylaxis) were not applied to individuals with advanced dementia (defined as a Mini Mental State Exam (MMSE) score ≤10) or a documented life expectancy of six months or less, including those who had been referred to hospice.²³ The primary outcome was aggregate quality of care for the UCLA ADC cohort calculated as the total number of recommended care processes received divided by the total number of eligible quality indicators. Secondary outcomes included aggregate quality of care in each of the three domains of dementia care.

Descriptive statistics were used to report demographic information and selected clinical variables abstracted from the medical record or obtained from UCLA ADC program records. Analyses were performed using STATA IC Version 13 (StataCorp, LP, College Station, Texas).

RESULTS

For the first 797 community-dwelling adults with dementia enrolled in the UCLA ADC program, the mean age was 82.0 (SD 8.8); 67% of enrollees were women; 27% were racial or ethnic minorities; and 12% were dually insured with Medicare and Medicaid. Most had Alzheimer’s, mixed vascular and Alzheimer’s, or an unspecified type of dementia (88%) with a mean MMSE score of 17.2 (6.9). The majority of patients were referred by geriatricians (52%) or internists or family practice physicians (30%). (Table 1)

Table 1. Patient Characteristics, N=797.

Age, mean (SD), range 40-101 years	82.0 (8.8)
Female, N (%)	529 (67%)
Racial or ethnic minority, N (%)	217 (27%)
Primary language not English, N (%)	128 (16%)
Medicare and Medicaid dually insured, N (%)	94 (12%)
Alzheimer’s, mixed vascular and Alzheimer’s, or unspecified type of dementia, N (%)	703 (88%)
Mini Mental State Exam, mean (SD), range 0-30	17.2 (6.9)
ADLs performed independently, median (IQR), range 0-5	4 (2, 5)
IADLs performed independently, median (IQR), range 0-7	1 (0, 2)
Referring physician
Internal Medicine/Family Practice	235 (30%)
Geriatrics	414 (52%)
Neurology	128 (16%)
Other	15 (2%)
Dementia Care Manager
A	265 (33%)
B	31 (4%)
C	103 (13%)
D	197 (25%)
E	201 (25%)

ADL = Activities of Daily Living, IADL = Instrumental Activities of Daily Living

Patients were eligible for 9,982 dementia quality indicators, of which 92% were passed. Overall pass-rates among the five dementia care managers were similar (range 90% to 96%). All counseling and assessment QIs had pass-rates greater than 80% with most exceeding 90%; the aggregate pass rate for treatment QIs was 69%. Wider variation in adherence was found among QIs addressing treatments for dementia, which were triggered by patient-specific criteria, ranging from 27% for discontinuation or justification of medications associated with mental status changes to 85% for discussion about acetylcholinesterase inhibitors. Ninety-eight percent of enrollees received counselling regarding advance care planning, and 75% had preferences regarding resuscitation status, level of medical intervention, or feeding tubes documented in the medical record. (Table 2)

Fifteen people (2%) died during the three month abstraction window, and 28 individuals (4%) had documentation indicating life expectancy less than six months or had been referred to hospice.

DISCUSSION

The UCLA ADC program achieved very high quality of care for dementia, especially for assessment, screening and counseling; however, there was more variability in adherence to treatment-associated quality indicators. Some of these quality indicators may be more difficult to implement, such as discontinuing medications associated with mental-status changes, especially as changes in medications in a co-management model require agreement from the patient’s primary care physician. Poor performance on this quality indicator has also been documented in other studies of physician-provided and nurse-practitioner provided care.^{6, 8} The variability in pass-rates among treatment indicators also likely reflects a learning curve for nurse practitioners beginning dementia care co-management during the first two years of the UCLA ADC program. It is also possible that some interventions were not well-documented in the medical record and thus were not captured in the chart abstraction. Dementia care management software, newly implemented by the UCLA ADC program, will provide prompts identifying those patients eligible for dementia-related treatments and may improve adherence to these quality indicators.

These findings should be considered in the context of the study’s limitations. We chose to abstract a three-month window after program enrollment as most quality indicators should be addressed at the initial visit or soon thereafter given the comprehensive nature of the program. Also, we did not perform a complete medical record abstraction but instead abstracted only DCM notes since the focus of this evaluation was quality of dementia care provided by the UCLA ADC program. For assessment and counseling domains, the high eligibility for and adherence to quality indicators suggest that little clinical data were lacking in this limited abstraction. However, this approach may have missed treatments initiated by a primary care physician or other dementia specialist, thus the quality indicator adherence rate captured in the abstraction is conservative. Lastly, this is a descriptive study of the quality of care provided by a single dementia care co-management program using nurse practitioners in an insured population in an academic health system. Thus, these findings may not be applicable to some other dementia care settings.

Prior interventions to improve quality for dementia care have included screening and case finding, medical record prompts, structured visit notes, physician education, nurse care management, or nurse practitioner co-management in a primary care clinic setting.^{5, 7-9, 11} Although all of these interventions resulted in some improvement in quality, none achieved high adherence across all domains of dementia care (Table 3).

Table 3. Dementia Quality Indicator Pass Rates: UCLA Alzheimer’s and Dementia Care (ADC) Program compared to ACOVE Studies.

ACOVE QI Description	ACOVE Studies with participants eligible for QI (reference number)	ACOVE Observational Studies	ACOVE Intervention Studies	UCLA ADC Program
		N Passed / N Eligible (%)
Domain: Assessment and screening
Annual assessment of cognition	5-8	19/45 (42%)	75/192 (39%)	747/793 (94%)
Annual evaluation of function	4, 6, 8, *	40/629 (6%)	52/80 (65%)	770/797 (97%)
HIV/STS testing if risk factors+	9	No eligible	1/1 (100%)	0/1 (0%)
Depression screening	4, 6-9, *	8/11 (73%)	31/36 (86%)	793/796 (99%)
Annual screen for behavioral symptoms	6-9, *	45/96 (47%)	87/198 (44%)	787/797 (99%)
Annual medication review	7	No eligible	26/40 (65%)	794/797 (99%)
Subtotal		112/781 (14%)	271/546 (50%)	3892/3980 (98%)
Domain: Counseling
Caregiver counselled in at least 2 domains	4-9, *	42/157 (27%)	99/269 (37%)	789/797 (99%)
Counselled regarding driving	4, 6-9, *	3/13 (23%)	19/94 (20%)	740/795 (93%)
Subtotal		45/170 (26%)	118/363 (33%)	1529/1592 (96%)
Domain: Treatment
Discussion about acetylcholinesterase inhibitors	5-9	5/6 (83%)	40/61 (66%)	259/302 (86%)
Received CVA prophylaxis, if indicated	4, 6, 8, 9, *	8/9 (89%)	17/18 (94%)	64/88 (73%)
Treatment with behavioral interventions first or concurrently with medications	6-9	11/32 (34%)	17/108 (16%)	368/537 (69%)
Risks/benefits discussion documented for new antipsychotics	7-9	1/5 (20%)	7/9 (78%)	5/10 (50%)
Discontinue or justify medications associated with mental status changes	6, 8	0/5 (0%)	8/32 (25%)	35/131 (27%)
Subtotal		25/57 (44%)	89/228 (39%)	731/1068 (68%)
Overall pass rate		182/1008 (18%)	479/1138 (42%)	6152/6641 (93%)

All studies measured quality of care for dementia using the same 13 ACOVE quality indicators. Four quality indicators not used in all studies were excluded from the table above, including staging of dementia, counseling regarding advance care planning or palliative care, identification of a surrogate decision maker, and assessing response to new medication for dementia or depression. Adherence to TSH and B12 laboratory testing was not scored using the same method across all studies and thus was not included in the comparison. The observational study group included three observational studies^{4, 6} (unpublished, personal communication with Neil S. Wenger*) and two control arms from interventional studies.^{5, 9} The interventional study group included four interventional studies.^{5, 7-9} Characteristics of the ACOVE studies are provided in the Appendix.

There are several reasons why quality of care for dementia is poor in the current US health care delivery system. Although dementia is a common disease among the very old, many primary care physicians have relatively few patients with dementia in their panels and may lack expertise in the management of some aspects of the disease.²⁴ Moreover, many aspects of providing high-quality dementia care are very time intensive. In a traditional fifteen-to-twenty-minute office visit, busy physicians often do not have time to counsel caregivers regarding safety risks, provide training in behavioral management, research what community resources are available for support or respite, and coordinate referrals to organizations. Needs of patients and families are also often outside the scope of traditional medical management of dementia and may include referral for legal advice, discussion about financial resources for care, advice regarding options for more supportive living environments, expertise in home modification to improve mobility or reduce fall risk, or assistance in applying for long-term care services and supports.

For some patients and caregivers, meeting dementia care needs also requires extensive outreach, including home visits as patients become homebound, visits to other care settings, including hospitals and nursing homes, and telephone or electronic mail follow-up at frequent intervals. Providers must also communicate with home health agencies and community organizations that interface with patients to ensure services match individual needs and to alert organizations to changes in a patient’s medical or social situation. Providing appropriate interventions requires a deep understanding of the patient’s and caregiver’s needs, including what is financially possible and geographically available.

Nurse practitioner dementia care co-management overcomes several of these barriers to high quality dementia care. First, a ninety-minute in-person initial assessment dedicated to dementia care provides time to address patient and caregiver concerns, provide counseling, and initiate referrals. Secondly, as dementia care managers focus on the treatment of dementia, they become content experts in managing the medical and social aspects of dementia care, including specific techniques for behavioral management, counselling regarding safety concerns, dementia-related medication management, knowledge of available community resources, care coordination, advance care planning, and identification of caregiver strain and depression.

Although the UCLA ADC model of nurse practitioner co-management offers promise for improving the quality of care for dementia, the majority of program services are not currently supported by the current fee-for-service Medicare benefit, creating a barrier to wider implementation of a co-management model for dementia care. If improved quality of care for dementia translates into better health outcomes for patient and caregivers, including fewer neuropsychiatric symptoms and less caregiver strain and depression, and lowers cost of care by avoiding unnecessary emergency department visits and hospitalizations (the Centers for Medicare and Medicaid Services’ triple aim),²⁵ then there will be a strong case for the adoption of reimbursement for providing dementia co-management services.

In summary, a comprehensive dementia care program with dedicated nurse practitioner care managers can result in near universal adherence to recommended guidelines. Whether this leads to improved health or lower costs still remains to be determined.

Appendix

APPENDIX: Study Characteristics of the UCLA Alzheimer’s and Dementia Care (ADC) Program Compared to Assessing Care of Vulnerable Elders (ACOVE) Studies.

Study	Years	Clinical setting	Intervention	Age (Mean)	Female (%)	White, non- Hispanic (%)	Aggregate quality score for dementia % (N Pass / N Eligible)
UCLA ADC, N=797	2012-2014	Academic health system	UCLA ADC Program	82	67%	73%	93% (6152/6641)
ACOVE Studies, N=881
Wenger NS, et al,4 N=24*	1998	Managed care organizations	None	81	64%	NA	22% (38/171)*
Wenger NS, et al,5 N=200	2002	Large urban medical groups	Multicomponent practice- change intervention	81	66%	95%	39% (26/67)**
							39% (46/119)**
Reuben DB, et al,7 N=121	2007	Community-based practices	Multicomponent practice- change intervention, adapted for dementia care	NA	NA	NA	44% (173/393)**
Ganz DA, et al, 9 N=111	2007	Academic geriatrics practice	NP co-management	85	67%	NA	34% (52/151)*
							55% (88/160)**
Wenger NS, et al, 6 N=41	2007	Medicare Advantage Special Needs Plan	Nurse care management	76	67%	51%	19% (64/346)*
Reuben DB, et al,8 N=115	2010	Community-based practices	Multicomponent practice- change intervention with NP co-management	83	71%	NA	37% (172/466)**
Wenger NS (unpublished), N=269	2005	Medicare beneficiaries, fee-for- service and Medicare Advantage	None	82	53%	92%	1% (2/273)*

Number of participants with dementia is reported for each study. All ACOVE studies used an abstraction window of 12 months and a complete medical record abstraction.

^*Observational study or control arm of an interventional study

^**Intervention arm

NA=not available