Implementation of the Care Ecosystem Training Model for Individuals With Dementia in a High-risk, Integrated Care Management
Phase: NA
Conditions: Dementia, Alzheimer Disease
Sponsor: Mclean Hospital

Protocol Template, Version 3.0  
 
 
 
FY19_PILOT3_FORESTER_IMPLEMENTATION OF THE CARE 
ECOSYSTEM TRAINING MODEL FOR INDIVIDUALS WITH 
DEMENTIA IN A HIGH-RISK, INTEGRATED CARE MANAGEMENT 
PROGRAM 
 
Study Chairman or Principal Investigator: 
Brent P. Forester, MD, MSc 
Supported by: 
The National Institute on Aging 
Study Intervention Provided by:  
Partners HealthCare 
 (Any modification to the protocol should be annotated on the coversheet or in an appendix.  The 
annotation should note the exact words that are changed, the location in the protocol, the date the 
modification was approved by the Executive Committee, and the date it became effective.)  
 

Protocol Template, Version 3.0 
 
Version 3 
January 19, 2022

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TABLE OF CONTENTS 

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I. Procedures Schedule 
  
II. Informed Consent Form Template 
  
III. Other (add as many appendices as necessary) 
 
 

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PRÉCIS 
Study Title  
Implementation of the Care Ecosystem training model for individuals with dementia in a 
high-risk, integrated care management program.  
Objectives  
Our primary objective is to test the feasibility of collecting emergency department visit 
data among the PLWD cared for by the primary care practices. 
 
Our secondary objective is to determine the short-term impacts of an adapted Care 
Ecosystem curriculum and workflow on care management processes, healthcare 
utilization, behavioral symptoms of dementia, caregiver burden, and caregiver 
depression. 
  
Design and Outcomes   
We propose a pragmatic randomized quality improvement pilot trial to assess the 
feasibility and effectiveness of an adapted Care Ecosystem dementia care training for pre-
existing nurse care managers who provide care management to high risk patients.  We 
will work with iCMP medical and operational leaders to engage 30 targeted nurse care 
managers who serve PCP practices with the highest proportions of minority / low SES 
patients.  15 iCMP nurse care managers will be randomly assigned to receive early Care 
Ecosystem training and the remaining 15 will be assigned to received delayed Care 
Ecosystem training.  Persons with dementia (PWDs) and their caregivers will not be 
informed whether their nurse care manager has received Care Ecosystem training, and 
will therefore be masked to the assignment of their care manager.   
 
Data and outcomes to be included in the QI study will include:  
(1) iCMP key process measures to be extracted from Epic documentation system (patient 
status, number of contacts between nurse manager and patient and/or caregiver, 
community resource requests) 
(2) Medicare claims data (health care utilization and costs) 
(3) Epic clinical data (caregiver strain and depression, behavioral symptoms of dementia, 
medication reconciliation, documented serious illness conversations/advance care 
planning) 
(4) Semi-structured interviews of nurse care managers 
(5) Surveys of caregivers to augment data captured in Epic clinical data and allow for 
evaluation of short-term impacts of enhanced training (caregiver strain and burden, 
caregiver depression symptoms, patient behavioral symptoms of dementia and patient 
quality of life for PWD).  
 
Interventions and Duration  
The adapted Care Ecosystem intervention will include three distinct phases: 

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(1) Developing an adaptation of Care Ecosystem training and workflows through 
feedback from a workgroup consisting of recently retired highly experienced iCMP 
nurse care managers, an iCMP medical director, a dementia expert, pharmacist, and 
an active caregiver. 
(2) Training of iCMP nurse care managers in the adapted version of Care Ecosystem (e-
learning modules and workflows, 1-day in-person training). 
(3) Implementing the adapted Care Ecosystem intervention with trained nurse care 
managers. 
(4) Booster sessions and process audits to augment intervention fidelity 
 
We will compare the outcomes detailed above between the early training nurse cohort 
and the delayed training nurse cohort. 
We plan to spend the first 3 months of the project collecting feedback and adapting the 
training. Nurse care managers will be trained at the end of month three. Outcome 
measures will be collected at the end of month nine. The delayed training cohort will 
receive training in month ten. 
Sample Size and Population  
Preliminary estimates based on 2018 data suggest that on average FTE nurse care 
managers in our health system have 10 Medicare beneficiaries diagnosed with dementia 
on their panels.  For this pragmatic quality improvement trial, we plan to engage 30 
active iCMP nurse care managers serving approximately 300 PWD and their caregivers.  
These 30 nurses represent roughly half of all existing nurse care managers.  Because of 
the pilot nature of this QI intervention and budget limitations we do not plan to engage all 
nurses, rather we will seek to engage nurse care managers serving the largest proportions 
of minority / low SES patients. This pilot will provide information that will guide future 
large-scale implementations of the adapted Care Ecosystem training inside and outside of 
Partners Healthcare. 
 
While all patients receiving care from these nurse care managers may be impacted, we 
will measure process and outcomes only among the estimated 300 PWD and caregivers 
who have an indication of dementia within Medicare claims data and are actively 
receiving care management services from the nurse care manager at the time of early 
training (end of month 3).  

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STUDY TEAM ROSTER  
List individuals who play key roles in the development and execution of the study, especially 
those who may need to be contacted by the sites during the course of the study.  Include address, 
telephone, fax and e-mail address of each individual listed and include a brief summary of each 
individual’s main responsibilities.  
Principal Investigator: 
Brent P. Forester, MD, MSc 
Medical Director, Behavioral Health Integration  
 
Quality and Patient Experience 
 
Mass General Brigham 
 
399 Revolution Drive, Somerville, MA 02145 
 
Phone: (617) 855-3622 
 
Fax: (617) 855-3246 
 
BForester@partners.org 
 
Main responsibilities/Key roles: Dr. Forester will oversee all 
aspects of the study including trainings, implementation of the model, regular communication 
with all members of the research and clinical teams, regulatory materials, data collection and 
analysis and manuscript preparation. 
Co-Investigators: 
 
Christine Vogeli, PhD 
 
Director of Evaluation and Research 
 
Partners HealthCare Population Health 
 
Phone: (857) 282-6464 
 
CVogeli@partners.org 
 
Main responsibilities/Key roles: Dr. Vogeli will supervise the 
creation of the quantitative data files from Partners data assets (including EPIC, claims data, 
programmatic data) and lead the analysis of outcomes based on these data.    
 
 
Christine Ritchie, MD, MSPH 
 
 
Director, Mongan Institute Ctr for Aging and Serious Illness 
 
 
Director of Research 
 
 
Division of Palliative Care and Geriatric Medicine 
 
 
Massachusetts General Hospital 
 
 
55 Fruit Street, Boston, MA 02114 
 
 
Phone: (617) 724-9197 
 
 
CSRitchie@mgh.harvard.edu 
 
 
Main responsibilities/Key roles: Dr. Ritchie will lead the 
adaptation of CareEco training with the Taskforce and will oversee iCMP care manager training. 
She will advise on study implementation, assist in the interpretation of data analyses and engage 
in relevant manuscript preparation. She will work with the study team in planning for the next 
phase of work after the completion of the pilot. 
 
 
Karen Donelan, ScD, EdM 

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Director, Survey Research and Implementation Unit 
 
 
Mongan Institute  
 
 
Massachusetts General Hospital 
 
 
100 Cambridge St, 16th floor, Boston, MA 02114 
 
 
Phone: (617) 726-0681 
 
 
Fax: (617) 724-3166 
 
 
KDonelan@partners.org 
 
 
Main responsibilities/Key roles: Dr. Donelan will develop the 
semi structured interview guides and caregiver surveys.  She will manage data collection based 
on these tools and will summarize findings from semi-structured interviews.   
PARTICIPATING STUDY SITES  
All Primary care practices, nurse care managers who work within those practices, and patients 
who receive care from these providers are within Partners Healthcare.     
 
 
 
Mass General Brigham 
 
399 Revolution Drive, Somerville, MA 02145 
 
Phone: (617) 855-3622 
 
Fax: (617) 855-3246 
 
BForester@partners.org 
  
 
 
 

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1 
STUDY OBJECTIVES 
1.1 Primary Objective 
The primary objective of this study is to establish the feasibility of collecting emergency 
department visit data among the PLWD cared for by the primary care practices. 
1.2 Secondary Objectives 
The secondary objective of this study is to measure short term impacts of the adapted 
Care Ecosystem training on PWD and their caregivers.   
 
2 
BACKGROUND AND RATIONALE  
2.1 Background on Condition, Disease, or Other Primary Study Focus 
The prevalence of Alzheimer’s Disease (AD) and related dementias, currently affecting 
5.8 million Americans, is expected to increase to 14 million by the year 2050, with 
annual costs escalating from $290 billion to $1.1 trillion. Nearly half the individuals with 
dementia in the US are not diagnosed, and amongst those who are, 50% are not informed 
of their diagnosis, while most are identified during the moderate stage of the illness2. 
Dementia adversely impacts caregivers, who provide 16 million hours of unpaid care per 
year for individuals with AD and related dementias, and suffer greatly from stress, 
depression, anxiety, and health problems, which often leads to poor outcomes for their 
loved ones with dementia. Furthermore, behavioral symptoms of dementia, including 
agitation and depression, are nearly universal over the course of the illness and 
substantially contribute to elevated risks for morbidity, mortality, utilization of costly 
acute health care services, caregiver stress and long- term care placement3,4. Primary care 
physicians report a lack of time, training and resources to systematically screen for, 
diagnose, and treat dementia, as well as to provide adequate psychosocial support to 
unpaid caregivers5,6. This may lead to inadequate advance care planning and contribute to 
avoidable ED visits, hospital admissions and medical interventions as the disease 
progresses. Prior studies have demonstrated that enrollment in a collaborative care 
program for dementia is associated with improved functioning and quality of life, 
reduction in behavioral symptoms of dementia and a decrease in caregiver burden with a 
net cost savings as high as $2800 annually per patient7. Many of these programs are, 
however, resource intensive, requiring the creation of new clinical teams embedded in 
primary care settings. Recently, a telephone-based collaborative dementia care 
intervention (Care Ecosystem), that provides personalized support and standardized 
education through care plan protocols8 delivered by trained health care navigators, has 
demonstrated lower rates of ED utilization and reduced caregiver depression and burden9. 
The Care Ecosystem (CareEco) model uses a telephone-based intervention to support 
persons with dementia (PWDs) and their caregivers, screening for common dementia-
related problems and providing modular standardized support protocols and caregiver 
education. Specially trained health care navigators systematically identify needs and 
address health status, advance care planning, medication management and management 
of challenging behaviors. Health care navigators receive backup support from a nurse, 

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social worker, dementia specialist, and pharmacist, and maintain close communication 
with the primary care provider of the PWD. CareEco was found to reduce ED utilization, 
improve PWD quality of life and improve caregiver outcomes9. While the healthcare 
navigators used in CareEco offer clear value, this model, if adopted in a system with 
established, robust care management teams and no preexisting health care navigators, 
could actually increase cost by adding personnel in the setting of limited space and 
resources. We hypothesize that adapting the CareEco model to augment the dementia 
care provided by a pre-existing care management team could improve care manager self-
efficacy in supporting PWDs, improve outcomes for PWDs and their caregivers, and 
optimize sustainability by enhancing dementia care competency of existing clinicians. In 
the proposed pragmatic clinical trial pilot, we will develop and test an adapted form of 
the CareEco intervention with experienced Integrated Care Management Program 
(iCMP) nurse care managers engaged in the care of high-risk, high-cost patients in a large 
health system. The strategic priorities of our health system are aligned with this work, 
both as a tool to provide higher-quality care to a high-risk population and as an 
opportunity to reduce ED visits and avoidable costs.  
The integrated care management program (iCMP) at Partners HealthCare is a nurse-led 
longitudinal care management program embedded in Primary Care practices across the 
Partners network that provides care management support to the most medically complex 
and seriously ill patients. iCMP care managers assess each patient to clarify problems, 
identify barriers to accessing clinical care and community-based services, including the 
social determinants of health, and create a patient-centric care plan. The iCMP program 
serves all payor populations and has cared for over 38,000 patients since 2012. 
Approximately 14,000 patients are presently enrolled in iCMP, 64% of whom are 
Medicare beneficiaries. An independent evaluation of Medicare patients in iCMP, relying 
on 18 months of claims data post-iCMP assessment, found an average savings in total 
medical expense (TME) of $101 per member per month10. iCMP teams care for many 
patients with dementia, but are not specifically trained in the care of persons with 
dementia (PWD) and their caregivers. iCMP care managers have described lower levels 
of self-efficacy in the care of PWD. An analysis of cognitive disorders within the 
Partners system identified a conservative estimate of dementia prevalence of 8.8% among 
iCMP Medicare patients based on ICD-10 diagnosis codes for dementia, as compared to a 
roughly 5.1% prevalence of dementia among all Medicare patients. Thus, the iCMP 
program provides an opportunity to train nurse care managers in an adapted CareEco 
model for dementia patients. 
2.2 Study Rationale 
The Care Ecosystem model is a telephone-based care program that provides standardized, 
proactive, personalized, and scalable support and education for caregivers, medication 
guidance, and promotion of proactive decision-making. It has demonstrated an 
improvement in patient quality of life and reduced unnecessary healthcare expenditures9. 
The CareEco intervention makes readily available an implementation protocol toolkit that 
that includes care protocols, educational materials, and online training. 
 
In the original study, a Care Team Navigator (CTN) and the PWD-caregiver dyad were at 

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the center of the intervention. The CTN first conducted a structured needs assessment 
scripted for CTNs that covered immediate needs, responded to immediate concerns and 
then reached out proactively to work with the dyad on caregiver support and education; 
medications; planning ahead for medical, financial, and legal decisions; and managing 
behaviors. The needs assessment was either completed in the first call, or in several calls 
over the first few months. While the content of the care included structured components 
and evidence-based protocols, the focus of the care was always tailored to the needs of 
each dyad. Issues that exceeded the CTN’s scope were triaged to a specialist team that 
included a dementia specialist, pharmacist, nurse and social worker. CTNs telephoned 
dyads at approximately monthly intervals for 12 months with phone frequency adjusted 
according to each dyad’s needs and preferences. All follow-up calls included screening 
for significant incidents (that may or may not result in ED/hospital visits), as well as 
changes in medication, behavior, and function. They also followed-up on progress and/or 
adjustments to goals discussed previously as well as the caregiver's wellbeing. 
Participants who declined regular contact were offered a “light” version of the 
intervention and were sent personalized educational materials via mail or email. This 
study was conducted in both urban (San Francisco Bay Area) and rural (Nebraska) 
settings. 
As noted in the background, PWD receiving CareEco had improved quality of life and 
reduced emergency department visits. Caregivers experienced decreased depression and 
caregiver burden within the first 6 months9. The evidence from the CareEco trial, 
therefore, supports a pragmatic trial as a next step. Since the conclusion of the CareEco 
study, an academic health system in Colorado, an integrated health system in Minnesota, 
and an academic integrated health system in New Orleans have all adopted CareEco as a 
care delivery model. They used the Open-access CareEco tools (toolkit, educational 
materials, data dictionary) to develop projects at each of their sites, demonstrating that it 
is feasible to adapt and implement CareEco in diverse settings. While CareEco has been 
adopted by 3 other health systems, none of these systems are formally evaluating its 
implementation in an embedded trial. In the original clinical trial, the intervention posed 
minimal risk, with no indication of adverse events or unintended consequences. 
Under value-based contracts, care management programs, and in particular care 
management embedded within primary care practices, have become a common strategy 
to address inappropriate utilization among complex patients11. We propose to build on 
this model and test an adaptation of Care Eco that involves uptraining existing primary 
care embedded nurse care managers rather than adding a new care navigator to address 
the needs of PWD and their caregivers. This adaption both improves the fit with our 
health system and would be applicable to many other accountable care organizations with 
existing high-risk care management programs. We anticipate that this adaptation will 
enhance scalability by using pre-existing staffing infrastructure, improve efficiency by 
weaving dementia care into an established care delivery model, and optimize 
sustainability by matching evidence-based workflow protocols with engaged clinicians 
(iCMP nurse care managers). 
3 
STUDY DESIGN 
 A description of the trial design should include: 

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• This is a pragmatic embedded randomized pilot trial of an adapted Care 
Ecosystem training model for nurse care managers.  The primary outcomes 
will assess the feasibility of collecting emergency department visit data 
among the PLWD cared for by the primary care practices.  Secondary 
outcomes will provide early indicators of program effectiveness.    
• The setting for the intervention is the Partners HealthCare primary care-based 
integrated care management program (iCMP). The program is available in all 
182 Partners primary care practices serving adult patients. Partners 
HealthCare is a non-profit integrated delivery system created by the merger of 
the Massachusetts General Hospital (MGH) and Brigham and Women’s 
Hospital (BWH). Partners primary practices serve patients residing in New 
Hampshire, and central and eastern Massachusetts. iCMP has been a network-
wide population health program since 2012, and has strong evidence of 
effectiveness 10, 12. iCMP employs registered nurses, social workers and 
community health workers who manage care for approximately 14,000 adult 
patients.  
• The original Care Ecosystem model that our intervention will be based on is a 
telephone-based intervention to support PWDs and their caregiver, screening 
for common dementia-related problems and providing modular standardized 
support protocols and caregiver education. Specially trained health care 
navigators identify needs and address health status, advance care planning, 
medication management and management of challenging behaviors. The 
intervention will occur via 1) development of an adaptation of the CareEco 
training through feedback from a task group; 2) training of iCMP nurse care 
managers in the adapted CareEco model; 3) implementing the adapted 
CareEco intervention with existing nurse care managers. 
• We will train iCMP nurse care managers, already assigned to work with PWD 
and their caregivers, in the Care Ecosystem model.  In collaboration with 
iCMP leadership we will identify 30 nurse care managers serving primary 
care practices with the highest proportions of minority / low SES patients.  
These nurse care managers will be randomly assigned to receive either early 
or delayed Care Ecosystem training.  
• We anticipate that nurses who receive training will change the way they 
provide care to all their patients with dementia.  However, measurement of 
patient-level process and outcome measures will be among patients who have 
an indication of dementia within their Medicare claims data and who are 
actively engaged with care management as of  the date care managers in the 
early training cohort are trained.   Preliminary estimates based on 2018 data 
suggest that on average nurse care managers have 10 Medicare beneficiaries 
diagnosed with dementia on their panels, yielding approximately 300 PWDs 
and their caregivers (150 patients in each arm).   
• We will spend the first 3 months of the project collecting feedback and 
adapting the training. The nurse care managers who are assigned to receive 

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early training will be trained at the end of month three, while those assigned 
to receive delayed training will be trained at the end of month 9.    
• Adapted Care Ecosystem training for the nurse care managers will occur via 
video-based learning as well as a 1-day in-person training held at the 
Assembly Row headquarters of Partners HealthCare.  
• Study subjects include patients receiving care from 30 nurse care managers 
serving primary care practices with the highest proportions of minority / low 
SES patients.  Nurse care managers will be randomly assigned to early vs. late 
training.  Preliminary estimates based on 2018 data suggest that on average 
nurse care managers have 10 Medicare beneficiaries diagnosed with dementia 
on their panels, yielding approximately 300 PWDs and their caregivers 
overall; 150 receiving care management from nurses who receive early 
training, and 150 receiving care from nurses who receive delayed training.  
PWD and their caregivers will be blinded as to the timing of Adapted Care 
Ecosystem training of their iCMP care manager.   
• All measurement and analysis will be performed by the study team using data 
housed within an existing Partners IRB approved Population Health Data 
Repository, or new quality improvement data collected by members of the 
study team. 
4 
SELECTION AND ENROLLMENT OF PARTICIPANTS  
The study population will consist of all persons with dementia who receive care from 30 
selected iCMP nurse care managers.  Only nurses who have been completely trained and 
onboarded into iCMP and with existing patient panels (e.g. 6 or more months of 
experience) will be asked to participate in the Care Ecosystem Training during this pilot 
period.  The training will be provided as part of on-going QA activities within the 
program, and similar to other training programs participation by individual nurse care 
managers will be optional.  The study team will work with clinical and operational 
leaders of the program to reach out to the 30 identified nurse care managers and schedule 
them for early or delayed training.  As the enhanced Care Ecosystem training will 
provide necessary skills for care managers, it will be implemented as a quality 
improvement trial.    
All PWD who are actively receiving care management services from a selected nurse 
care manager at the time of early training (end of month 3) will be included in the study.  
PWD will be identified based on the presence of one or more diagnosis code consistent 
with dementia during the year ending July 31, 2020.  Preliminary estimates based on 
2018 claims data suggest that a total of 300 PWD will be included in the study.  
Caregivers of PWD will be identified using Epic documentation.  This study will 
primarily leverage existing patient data collected within the Epic clinical record and 
medical claims.  These data will be augmented with surveys of PWD caregivers to allow 
for preliminary evaluations of effectiveness.  Both existing data and surveys pose 
minimal risks to patients.  Surveys will include standard language informing caregivers 
that their decision to participate in the survey will not impact their care or Medicare 

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benefits, that their participation is voluntary and that the information gathered will only 
be used to improve care quality for PWD and their caregivers.    
 
 
4.1 Inclusion Criteria  
Nurse care managers must meet all of the following inclusion criteria in order to be 
enrolled in the study: 
• Actively providing care management services within the Partners HealthCare 
iCMP program 
• Ability to understand study procedures and to comply with them for the entire 
length of the study. 
• Nurse care managers will be considered subjects for the structured interview 
component of the pilot, with a waiver of documentation of consent 
PWD must meet all of the following inclusion criteria in order to be enrolled in the study: 
• Medicare beneficiary aligned to the Partners Medicare ACO  
• ICD-10 diagnosis code consistent with dementia in Medicare claims between 
August 1, 2019 and July 31, 2020 (excluding diagnoses for diagnostic testing 
services)  
•  Actively engaged in care management services with a nurse care manager 
enrolled in the study 
• Must be at least 18 years old or older 
Caregivers must be identified by the iCMP care manager or in the PWD health record as 
next of kin, health proxy, guardian or primary paid caregiver or by the PCP, must speak 
English or Spanish, and must be at least 18 years old or older. 
 
4.2 Exclusion Criteria  
Nurse care managers meeting any of the following criteria will be excluded from the 
study: 
• Fewer than 6 months of employment as an iCMP nurse care manager 
 
PWD meeting any of the following criteria will be excluded from the study: 
• Permanent resident of long-term care or deceased at the start of the study  
Caregivers of PWD meeting any of the following criteria will be excluded from the 
study:   
• Preferred language other than Spanish or English 

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• lives out of the country 
• unclear relationship with PWD 
 
4.3 Study Enrollment Procedures  
• 
The investigative team has presented this study to iCMP leadership prior to 
funding.  The study team will attend an iCMP operations team meeting to 
discuss the Care Ecosystem training and expectations for participation in 
training.  Calendar year 2019 data will be used to determine the percentage of 
minority / lowest SES patients within the practices each care manager serves.  
The study team will collaborate with iCMP leadership to identify 30 nurses, 
prioritizing nurses who serve the most disadvantaged practices.  These nurses 
will be randomly assigned to either early or delayed training.  An e-mail co-
signed by the investigator leading the training and iCMP leadership will be 
sent to the selected nurses informing them of their training date.  Limitations 
in funding do not allow for training of all 87 nurse care managers within this 
pilot.  
• 
Nurses will be asked to complete an assessment of baseline dementia care 
knowledge and skills prior to their training. 
• 
Patients who actively receive care management from the 30 identified nurses 
and who have a diagnosis of dementia within Medicare claims data will be 
identified as PWD for this study.  We will leverage existing data within EPIC 
to identify caregivers for these PWD.   
• 
Preliminary examination of the structured fields within Epic that are used to 
house information on caregivers suggests that we will likely need to develop 
alternative methods, including review of notes, for identifying caregivers.  
5 
STUDY INTERVENTIONS  
5.1 Interventions, Administration, and Duration  
Following IRB approval, the intervention will include three distinct phases: 
(1) Developing an adaptation of CareEco training through feedback from a task 
group. The CareEco model will be adapted for iCMP teams with input from a 
taskforce consisting of recently retired highly experiences iCMP nurse care managers, 
an iCMP medical director, a dementia expert, a pharmacist, and an active caregiver. 
The taskforce will provide information on current care management practices for 
PWDs and their caregivers and guide the development of 1) the adapted CareEco 
training, and 2) the needs-based protocols provided by CareEco. We anticipate that 
adaptation of the training will involve elimination of clinical content already well 
known by care managers and enhancement/refinement of content (i.e., management 
of behavioral symptoms, strategies to reduce caregiver stress) identified by the 
workgroup as an observed need of iCMP nurse care managers. For example, nurse 
care managers currently receive training on serious illness conversations13, and 
advance care planning and documentation; these modules in the CareEco training will 
therefore be truncated. The current training content includes 23 6-minute videos and 

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hands-on practical training. Based out our review of these videos, the number of these 
videos will be substantively reduced; a 1-day in-person training will be planned to 
address hands-on, practical skills-based training needs. Revision of the protocols will 
be informed by current iCMP workflows and EMR documentation strategies. This 
phase will occur during the first three months of the project. 
(2) Training iCMP nurse care managers in the adapted version of CareEco. Prior to 
the 1-day in-person training, the care managers will engage in approximately 60 
minutes of e-learning of the abbreviated video training. The virtual training through 
video technology (secure Zoom platform) will occur all in one day and will address 
communication skills, the use of the CareEco protocols, documentation expectations 
and workflow concerns. For their involvement, iCMP care managers will receive a 
stipend and CEU credits. On a weekly basis, the intervention team will offer an 
hourly check-in to address any questions that arise. The iCMP nurse care managers 
will also have access to a dementia care expert, in addition to their pre-exiting social 
work and pharmacy team. The intervention team will monitor for intervention fidelity 
and work with iCMP nurse care managers if deviation from the adapted assessment 
and protocols are observed. Nurses in the early training cohort will receive their 
training in month three or month four, while nurses in the delayed training cohort will 
receive their training at the beginning of month ten. 
(3) Implementing the adapted CareEco intervention with trained nurse care 
managers. The adapted CareEco model will be delivered by the iCMP nurse 
managers within Partners HealthCare to patients on their panels as clinically 
appropriate. All care to PWD and their caregivers will be delivered over the phone. 
The care managers will always address immediate needs first, then screen for 
common problems and provide personalized support and standardized education 
using the adapted CareEco Care Plan Protocols; Medications, Safety, Referrals and 
Caregiver Education, Caregiver Well-being, Behavior Management, and Advance 
Care Planning8. Call frequency will be about monthly but personalized to each dyad’s 
needs and preferences. The study team will offer booster sessions and coaching over 
the course of the study to iCMP nurse managers who either ask for assistance or who, 
through chart audits, do not appear to be integrating the training into the care of their 
PWD. Implementation will occur following completion of training for the nurse care 
managers randomized to the early training cohort. 
5.2 Handling of Study Interventions  
As described above, the adapted Care Ecosystem training model will consist of dementia 
care management delivered via phone by nurse care managers to support PWDs and their 
caregivers.  
Due to the pragmatic and embedded nature of this pilot, iCMP nurse care managers will 
be informed that the intervention will include training on enhanced dementia care 
management. PWDs and their caregivers will not be informed when their nurse care 
manager has received CareEco training and will therefore be masked to CareEco training 
assignment of their care manager. 

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5.3 Concomitant Interventions 
There will be no restrictions on the amount or nature of concomitant interventions for 
PWDs and their caregivers. 
5.4 Adherence Assessment  
iCMP nurse care managers will be expected to complete all e-learning modules and 
attend the entirety of the 1-day in-person training. The intervention team will monitor for 
intervention fidelity through iCMP data and work with iCMP nurse care managers if 
deviation from the adapted assessment and protocols are observed. 
 
 

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6 
STUDY PROCEDURES 
There will be five sources of data to be used in these analyses.   
• iCMP Program Data: iCMP collects key process measures including patient status within 
the program, the number of nurse care manager contacts with the patient / caregiver and 
community resource requests.  Nurses can document caregiver strain and PWD behavioral 
symptoms in structured fields or in iCMP visit notes.  Caregiver depression can likewise 
be assessed and documented in iCMP visit notes. These data will be used to measure iCMP 
visit frequency and documentation of key patient and caregiver outcomes in order to assess 
CareEco implementation fidelity. iCMP program data is captured within Epic and flows 
directly into the Partners data warehouse, where it is co-housed with clinical and financial 
data from the Partners electronic health record (Epic) and linked claims data for patients in 
the Medicare MSSP contract.   
 
• Medicare Claims data will be used to identify iCMP patients with dementia at baseline and 
over time, and to construct measures of health care utilization and costs.   
 
• Epic clinical data will be used to identify patient caregivers, capture PWD and caregiver 
outcomes documented in the iCMP note, and identify whether medication reconciliation 
and serious illness conversations / advance care planning occurred related to the iCMP 
interaction. In addition, Epic contains structured assessments of caregiver strain and PWD 
behavioral symptoms.  All Epic elements flow to tables within the Partners data warehouse. 
For some PWD, outcome measures of caregiver strain and PWD behavioral symptoms 
have already been integrated into Epic documentation (see data sources above). We will 
compare EMR-integrated measures with measures derived from the surveys of PWD 
caregivers to determine the relative completeness and quality of the two data sources with 
a goal of reducing more resource-intensive primary data collection in future studies.  
 
• 
Caregiver Survey: All caregivers of PWD (among the eligible cohort) will be asked to 
participate in a survey at months three (prior to the launch of the CareEco intervention) 
and nine. A waiver of documentation of consent will be requested for the caregiver 
survey. The survey will assess caregiver strain and burden, caregiver depression 
symptoms and behavioral symptoms of dementia and quality of life for the PWD.  To 
streamline identification of caregivers of PWD, study staff will provide nurse care 
managers with a list of identified PWD and we will review medical records of persons 
with dementia to identify their caregivers.. Study staff will request that nurse care 
managers verify the primary caregiver for each PWD.   Caregivers of PWD will be sent 
an invitation letter by mail (caregivers).  The invitation letter will be accompanied by a 
study Fact Sheet about the study and will inform caregivers of their right to refuse 
participation. The Fact Sheet will address the following points: the research involves no 
more than minimal risk to the subjects; the waiver or alteration will not adversely affect 
the rights and welfare of the subjects; the research could not practicably be carried out 
without the waiver or alteration; and whenever appropriate, the subjects will be provided 

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with additional pertinent information after participation. If eligible participants refuse, 
there will be no further contact. If there is no response, we will call to confirm receipt of 
the letter, re-sending and/or and reviewing content as needed. If participant agrees to be 
interviewed, the interview will be scheduled. At the time of the interview, the interviewer 
will again repeat study fact sheet details and proceed if the respondent consents.  
• The survey of Caregivers will be administered by phone in both English and Spanish to 
ensure responses from diverse patient and caregiver populations.  Spanish versions will be 
administered by an experienced native Spanish language health care surveyor with over 
four years of experience.  Care-giver respondents will be offered a $25 bank gift card, via 
Forte, in appreciation of their time and effort.  Based on our prior experience, we expect 
50% to 60% of PWD caregivers will respond.  We will assess the extent to which patients 
with less severe dementia would be able to self-report their symptoms, but for this pilot 
only caregivers will be surveyed. 
 
• Semi-structured interviews of nurse care managers:  All care managers selected for adapted 
CareEco will be invited to participate (via e-mail) in individual semi-structured quality 
assurance interviews to debrief on their experiences.  The email will address include the 
following: the research involves no more than minimal risk to the subjects; the waiver or 
alteration will not adversely affect the rights and welfare of the subjects; the research could 
not practicably be carried out without the waiver or alteration; and whenever appropriate, 
the subjects will be provided with additional pertinent information after participation. 
Nurses will be informed be informed of the potential benefits and risks of participation.  
Nurses have the right to refuse participation, and decisions to participate will not be linked 
to employment or be shared with iCMP leadership. This pilot seeks to understand barriers 
to implementing the CareEco training; information on barriers and challenges will be used 
for research purposes only and will not become part of personnel files or result in 
disciplinary actions.  No identifiable data from nurse interviews will be shared outside of 
the study team.  Nurses will be asked to approve recording to aid in transcription of the 
interviews; nurses can refuse recording, but still participate in the interviews. Nurses will 
receive a small stipend to compensate for their time.  Interviews will be performed by 
phone; a waiver of documentation of consent will be requested for the nurse care manager 
interviews. 
Interviews will be scheduled two months after the launch of the CareEco training (month 
five). These interviews will be conducted in care manager offices or by telephone or a 
video technology platform at the convenience of the care manager. The interviews will last 
approximately 30 to 40 minutes. Research with the iCMP care management staff, 
conducted by our team in both 2017 and 2018 as part of a PCORI funded study of care 
management programs, achieved 75% participation rates. Interview domains will include 
1) general experience in caring for PWD and their caregivers; 2) experience in direct 
outreach to caregivers and patients (including identifying the most knowledgeable or 
engaged caregivers); 3) perceptions of services most needed and most difficult to arrange 
for patients with dementia and their caregivers; 4) assessment of the adequacy of training 
as adapted to the iCMP context; 5) recommendations for further adaptation of the CareEco 
model, and 6) among care managers not participating in the training, implementation 

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barriers, including contextual factors, fit and overarching issues that impacted non-
participation.    
 
The following table summarizes the measures that will be used in this study. 
 
 

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6.1 
Schedule of Evaluations 
 
6.2 
Description of Evaluations  
This section should include definitions of the row headings in the Schedule of 
Evaluations and any special instructions.  All of the items listed on the Schedule of 
Evaluations should be described in this section.   
6.2.1 Screening Evaluation 
Consenting Procedure 
Nurse care manager participation in the CareEco training is a quality improvement 
project and therefore consent is not applicable. Nurse care mangers will be recruited 
to participate in individual phone-based semi-structured interviews by the study team.  
We seek a waiver of documentation of consent as interviews are low risk and will not 
be performed in person. 
We will recruit caregivers of PWD to participate in a telephone interview.  PWD will 
not be contacted within this study.  We seek a waiver of documentation of consent as 
surveys of caregivers of PWD are low risk and will not be performed in person.  We 
will review medical records of persons with dementia to identify their caregivers. 
Caregivers will be informed that their responses to these surveys will be kept entirely 
confidential. They will be given the option to opt out of answering the survey 
questions; those who opt out will not have their data included in the final analysis. 
Finally, we will use existing Medicare Claims data and Epic medical record data to 
measure outcomes for PWD.  Outcomes, by source, are listed in Table 1 above.  We 
seek a waiver of informed consent for the use of these data.  All data will remain on 

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secure drives within the health care delivery organization (as all study staff are part of 
the organization).  The use of this secondary data is low risk and be presented in 
aggregate consistent with HIPPA protections when shared with members of the 
CRESCENT prime team.   
Screening   
There will not be screening procedures for this study.  
6.2.2 Enrollment, Baseline, and/or Randomization 
Enrollment 
Patients who actively receive care management from the 30 identified nurses and who 
have a diagnosis of dementia within Medicare claims data will be identified as PWD 
for this study.  We will leverage existing data within EPIC to identify caregivers for 
these PWD.  Both PWD and their caregivers will be considered study subjects. 
Preliminary examination of the structured fields within Epic that are used to house 
information on caregivers suggests that we will likely need to develop alternative 
methods, including review of notes, for identifying caregivers.  
Baseline Assessments 
Caregiver survey: Caregivers will be sent an advance letter about the study, and then 
calls to caregivers will occur at month three (prior to the launch of the CareEco 
intervention) and again at month nine. The survey battery administered during these 
calls will include: 
• Caregiver Strain Index 
• Caregiver Patient Health Questionnaire (PHQ-8) 
• Neuropsychiatric Inventory Questionnaire (NPI-Q) (includes caregiver 
distress) 
• Quality of Life in Alzheimer’s Disease (QOL-AD) (includes caregiver and 
patient measures) 
• Quick Dementia Rating Scale (patient) 
• Experience of Care and Unmet Needs (adapted from CAHPS)  
The surveys will be administered by phone in both English and Spanish to ensure 
responses from diverse patient and caregiver populations. Spanish versions will be 
administered by a trained, experienced bilingual interviewer with over four years of 
experience. Based on prior experience, we expect 50-60% of PWD caregivers will 
respond. We will assess the extent to which patients with less severe dementia would 
be able to self-report their symptoms, but for this pilot only caregivers will be 
surveyed. 
Nurse care manager interview: A semi-structured interview of nurse care managers 
will be conducted at month five (two months following the launch of the adapted 
CareEco intervention) for quality assessment purposes. Interviews will be conducted 
by telephone at the convenience of the care manager and will last approximately 30 to 

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40 minutes. Interview domains will include 1) General experience in caring for 
PWDs and their caregivers; 2) Experience in direct outreach to caregivers and 
patients (including identifying the most knowledgeable or engaged caregivers); 3) 
Perceptions of services most needed and most difficult to arrange for patients with 
dementia and their caregivers; 4) Assessment of the adequacy of training as adapted 
to the iCMP context; and 5) Recommendations for further adaptation of the CareEco 
model.  These data will be used to identify implementation barriers, and improve care 
quality. 
Randomization 
Nurse care managers selected by for participation in training will be randomly 
assigned to early vs. delayed training.  Preliminary estimates based on 2018 data 
suggest that on average nurse care managers have 10 Medicare beneficiaries 
diagnosed with dementia on their panels, yielding approximately 300 PWDs and their 
caregivers overall; 150 receiving care management from nurses who receive early 
training, and 150 receiving care from nurses who receive delayed training.  PWD and 
their caregivers will be blinded as to the timing of Adapted Care Ecosystem training 
of their iCMP care manager.   
6.2.3 Follow Up/Final Evaluation 
Refer to “Baseline Assessments” for a description of the assessments that will be used 
to collect data from PWDs/caregivers at both baseline and follow-up.   
Medicare claims data will be used to construct measures of health care utilization 
and costs. This data will be accessed in months eight and nine. 
Epic clinical data will be used to capture PWD and caregiver outcomes documented 
in the iCMP note and to identify whether medication reconciliation and serious illness 
conversations/advance care planning occurred related to the iCMP interaction. In 
addition, Epic elements flow to tables within the Partners data warehouse. 
7 
SAFETY ASSESSMENTS  
7.1 Specification of Safety Parameters 
There are minimal safety concerns associated with this intervention. While nurse care 
managers who participate in the training may change the way they interact with patients 
and caregivers, all clinical and patient management decisions will remain in the RN, PCP 
and other care providers’ hands. Our investigative team includes that medical director of 
the iCMP program. Although we do not anticipate safety issues, if nurses do identify 
issues that are prompted by the training, we will work with the iCMP team to update 
nurses or advise them of the issues. 
The major risks to caregivers of PWD will be discomfort related to the survey questions. 
We will inform caregivers that they can refuse to answer any questions and can terminate 
their participation at any time. We will also inform caregivers that refusal to answer any 
questions will not have any impact on the care they are receiving. 
8 
INTERVENTION DISCONTINUATION  
We will not specify criteria for discontinuation of the intervention for this pilot study. 

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9 
STATISTICAL CONSIDERATIONS  
9.1 General Design Issues  
The primary purpose of this pilot is to assess feasibility of collecting the primary clinical 
outcome, defined as emergency department visits among the PWD. Secondary outcomes 
will assess the feasibility of implementation, number of contacts between nurse care 
managers and care partners, and documented advance care planning.   
9.2 Sample Size  
Given limitations to the trial duration, this study is considered a pilot to understand the 
feasibility of measurement and to provide data to support calculation of effect sizes for a 
subsequent full-scale study if the initial pilot results appear promising.  
9.3 Outcomes  
The primary outcome for the is pilot is emergency room visits within 6 months.  We will 
rely on Epic and Medicare claims data for all measures of healthcare service utilization 
and costs, care intensity / quality, documentation of advance care planning, and 
documentation of medication review. These outcomes will be assessed for all PWD who 
are cared for by selected nurse care managers using retrospective analysis of existing 
health care data.  We anticipate that this will include 150 PWD among care managers 
who receive early training and 150 PWD who receive delayed training.  These data are 
housed in an existing data repository; we anticipate minimal missing data.  Key 
secondary outcomes will assess the number of contacts between nurse care managers and 
care partners, and documented advance care planning; these measures likewise available 
from the existing data warehouse and we anticipate minimal missing data. 
 
In order to ensure systematic capture of key clinical outcomes within this pilot, we will 
survey caregivers of PWD receiving care management from the 30 selected nurse care 
managers and meeting our inclusion and exclusion criteria at months 3 and 9. We expect 
that a minimum of 50% of caregivers will complete each survey, yielding an expected 
sample of 75 PWD caregiver respondents completing each survey and 37 PWD caregiver 
respondents completing both an initial and follow- up survey for nurses assigned to the 
early and the delayed training.   We will assess the completeness and correlation of 
behavioral symptoms of dementia, caregiver depression, caregiver burden, and PWD 
quality of life captured via trained nurse care managers (and documented in Epic or 
iCMP data) with caregiver survey responses. 
9.4 Data Analyses 
Depending on the type of outcome, we will conduct either a linear, negative binomial, or 
logistic regression, with random effects for nurses, to account for multiple patients nested 
within the same nurse. The primary predictor will be intervention (iCMP nurse care 
manager assignment to early CareEco training versus delayed training). Models will be 
adjusted for a limited number of baseline covariates: dementia stage and severity; 
Elixhauser score; and patient characteristics. If there are many unbalanced patient or 

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nurse characteristics, we will use propensity score weighting to adjust for confounding in 
the face of the limited sample size. Secondary models will examine process measures as 
potential mediators of the intervention effect on reported outcomes, clinical outcomes, 
and utilization outcomes. Subgroup analyses will be explored, but given the limited 
sample size, we do not expect sufficient power to detect effect modification nor 
significant intervention effects within subgroups. 
10 
DATA COLLECTION AND QUALITY ASSURANCE 
10.1 Data Collection Forms 
Primary data collection for PWD and caregivers will include multiple patient-level 
clinical and claims measures drawn from system records as well as telephone surveys 
conducted with caregivers of PWD at baseline and follow up. Survey interviewers will be 
supervised by Dr. Donelan and will not be aware of whether the PDW’s nurse care 
manager has undergone CareEco trraining. Data for all patients and caregivers will be 
maintained in RedCAP; survey data will be entered directly into RedCAP using standard 
survey procedures.  Interviewers will maintain a record of all attempted contacts (Call 
Log) and their outcomes; a final disposition for each attempted case will be determined 
when all efforts are exhausted. 
10.2 Data Management  
RedCAP tools for data management include a participant list, a PWD/Caregiver list, 
apatient/caregiver baseline and follow up survey tools 
10.3 Quality Assurance  
10.3.1 Training 
Training of nurse care managers will be standardized and based on task force 
feedback gathered in the first two months of the study. 
10.3.2 Quality Control Committee  
If there is a study quality control committee, describe membership and list the reports 
that they review. 
10.3.3 Metrics 
Provide quality control metrics for outcome measures. 
10.3.4 Protocol Deviations 
The team will hold weekly meetings to discuss study progress, including any 
necessary adaptations that require IRB review.  A LabArchives record will be created 
for the project and linked to RedCAP documents and workflows. Using this approach, 
protocol deviations can be identified and reported promptly. 

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10.3.5 Monitoring 
PI, Co-PIs, and Project Manager will ensure proper monitoring and tracking of all 
pilot data, records, and forms. All identifiable data will be secured on password 
protected Partners Healthcare system computers or locked file cabinets.   All data will 
be de-identified as soon as practically possible.  Regularly scheduled meetings (2 
times per month) will be used to track progress and ensure compliance with study 
protocols. The study team will have established protocol and workflow to 
communicate with clinical teams in real time if patient safety issues are identified that 
need immediate attention.  
11 
PARTICIPANT RIGHTS AND CONFIDENTIALITY  
11.1 Institutional Review Board (IRB) Review 
This protocol and any subsequent modifications will be reviewed and approved by the 
IRB or ethics committee responsible for oversight of the study.  
11.2 Informed Consent Forms 
Nurse care manager participation in training is a quality improvement project and 
therefore consent is not applicable.  
For PWD and caregivers, completion of the survey does not generally require a consent 
form, rather the elements of consent are in the advance letter and are confirmed in the 
telephone interview. Completion of the survey implies consent, no additional consent 
forms will be signed by PWD or their caregivers. 
11.3 Participant Confidentiality  
Any data, forms, reports, video recordings, and other records that leave the site will be 
identified only by a participant identification number (Participant ID, PID) to maintain 
confidentiality.  All records will be kept in a locked file cabinet. Recordings will be saved 
for the duration of the pilot, and transcripts will be saved for seven years. All computer 
entry and networking programs will be done using PIDs only. Information will not be 
released without written permission of the participant, except as necessary for monitoring 
by IRB, the FDA, the NIA, and the OHRP. 
11.4 Study Discontinuation  
The study may be discontinued at any time by the IRB, the NIA, the OHRP, or other 
government agencies as part of their duties to ensure that research participants are 
protected.  
12 
ETHICAL CONSIDERATIONS 
Include in this section the guiding ethical principles being followed by the study. If the 
study is conducted at international sites, consider including reference to the Declaration 
of Helsinki, CIOMS, International Ethical Guidelines for Biomedical Research Involving 

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Human Subjects (2002), or another country’s ethical policy statement, whichever 
provides the most protection to human subjects. 
13 
PUBLICATION OF RESEARCH FINDINGS 
Publication of the results of this trial will be governed by the policies and procedures 
developed by the Steering Committee.  Any presentation, abstract, or manuscript will be 
made available for review by the sponsor and the NIA prior to submission. 
14 
REFERENCES 
1.  
Association A. 2019 ALZHEIMER’S DISEASE FACTS AND FIGURES Includes a 
Special Report on Alzheimer’s Detection in the Primary Care Setting: Connecting Patients 
and Physicians.; 2019. 
2.  
Prince M, Bryce R, Ferri C. The benefits of early diagnosis and intervention. World 
Alzheimer Rep 2011. 2011. 
3.  
Thyrian JR, Eichler T, Hertel J, et al. Burden of behavioral and psychiatric symptoms in 
people screened positive for dementia in primary care: Results of the DelpHi-study. J 
Alzheimers Dis. 2015. doi:10.3233/JAD-143114 
4.  
Dixon J, Karagiannidou M, Knapp M. The Effectiveness of Advance Care Planning in 
Improving End-of-Life Outcomes for People With Dementia and Their Carers: A 
Systematic Review and Critical Discussion.; 2018. doi:10.1016/j.jpainsymman.2017.04.009 
5.  
Hinton L, Franz CE, Reddy G, Flores Y, Kravitz RL, Barker JC. Practice constraints, 
behavioral problems, and dementia care: Primary care physicians’ perspectives. J Gen 
Intern Med. 2007. doi:10.1007/s11606-007-0317-y 
6.  
Bradford A, Kunik ME, Schulz P, Williams SP, Singh H. Missed and Delayed Diagnosis of 
Dementia in Primary Care: Prevalence and Contributing Factors.; 2009. 
doi:10.1097/WAD.0b013e3181a6bebc 
7.  
Heintz H, Monette P, Epstein-Lubow G, Smith L, Rowlett S, Forester BP. Emerging 
Collaborative Care Models for Dementia Care in the Primary Care Setting: A Narrative 
Review.; 2019. doi:10.1016/j.jagp.2019.07.015 
8.  
Possin KL, Merrilees J, Bonasera SJ, et al. Development of an adaptive, personalized, and 
scalable dementia care program: Early findings from the Care Ecosystem. PLoS Med. 2017. 
doi:10.1371/journal.pmed.1002260 
9.  
Possin KL, Merrilees JJ, Dulaney S, et al. Effect of Collaborative Dementia Care via 
Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The 
Care Ecosystem Randomized Clinical Trial. JAMA Intern Med. 2019. 
doi:10.1001/jamainternmed.2019.4101 

Protocol Template, Version 3.0 
22 
10.  Hsu J, Price M, Vogeli C, et al. Bending the spending curve by altering care delivery 
patterns: The role of care management within a pioneer ACO. Health Aff (Millwood). 
2017. doi:10.1377/hlthaff.2016.0922 
11.  Bodenheimer T, Berry-Millett R. Follow the Money — Controlling Expenditures by 
Improving Care for Patients Needing Costly Services. N Engl J Med. 2009;361(16):1521-
1523. doi:10.1056/NEJMp0907185 
12.  Urato C, McCall N, Cromwell J, Lenfestey N, Smith K, Raeder D. Evaluation of the 
Extended Medicare Care Management for High Cost Beneficiaries (CMHCB) 
Demonstration: Massachusetts General Hospital (MGH). :183. 
13.  Paladino J, Lakin JR, Sanders JJ. Communication Strategies for Sharing Prognostic 
Information With Patients: Beyond Survival Statistics. JAMA. 2019;322(14):1345-1346. 
doi:10.1001/jama.2019.11533 
15.  Zarit SH, Reever KE, Bach-Peterson J. Relatives of the Impaired Elderly: Correlates of 
Feelings of Burden. The Gerontologist. 1980;20(6):649-655. doi:10.1093/geront/20.6.649 
16.  Kaufer D, Cummings J, Ketchel P, et al. Validation of the NPI-Q, a Brief Clinical Form of 
the Neuropsychiatric Inventory. J Neuropsychiatry Clin Neurosci. 2000;12(2):233-239. 
17.  Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing Quality of Life in Older Adults 
With Cognitive Impairment: Psychosom Med. 2002;64(3):510-519. doi:10.1097/00006842-
200205000-00016 
18.  CAHPS Clinician & Group Survey | Agency for Health Research and Quality. 
https://www.ahrq.gov/cahps/surveys-guidance/cg/index.html. Accessed December 6, 2019. 
19.  Galvin JE. The Quick Dementia Rating System (QDRS): A rapid dementia staging tool. 
Alzheimers Dement Diagn Assess Dis Monit. 2015;1(2):249-259. 
doi:10.1016/j.dadm.2015.03.003 
20.  Elixhauser A, Steiner C, Harris DR, Coffey RM. Comorbidity Measures for Use with 
Administrative Data: Med Care. 1998;36(1):8-27. doi:10.1097/00005650-199801000-
00004