Coordinated system of care intervention (Vickery)
Name of Intervention: Alzheimer’s Disease Coordinated Care for San Diego Seniors (ACCESS)
Principal Investigator: Barbara Vickrey, MD, MPH
Institutional Affiliation: University of California, Los Angeles (UCLA)
Caregiver Intervention Description
1. Summary of Intervention
Managing the care of people with dementia is uniquely challenging because of memory loss and related communication, relationship, and behavior problems that can occur. A multifaceted dementia care management intervention (program) was designed to coordinate efforts, across three healthcare organizations and three social service community agency care agencies in San Diego, California, to provide recommended medical care and community support to people with dementia and their informal caregivers. Key aspects of the program were developed based on the Chronic Care Model. Four main ACCESS intervention components were: a steering committee to come to consensus on care goals and design the care coordination protocols, care managers, targeted provider education, and a web-based communication and decision support system.
- The Steering Committee included a physician champion from each participating healthcare organization, a senior leader from each community agency, a community caregiver, and support staff from the UCLA research team. The committee came to consensus to make 23 guidelines their dementia care quality goals; these were drawn from a larger set of existing dementia care guidelines. These quality goals covered domains of assessment of unmet needs and of aspects of health of people with dementia and their caregivers, treatment of the patient’s behavior problems and comorbid conditions, education and support for caregivers, and reporting/safety issues such as wandering, driving, and abuse. The Steering Committee crafted an assessment instrument and the care coordination protocols, and provided oversight for the design and implementation of the program.
- Care managers (primarily social workers) from each of the partnering healthcare organizations and community agencies received special training in dementia care and how to implement the care management protocols. During a home visit, care managers administered the standardized assessment instrument, then entered assessment data into a web-based software system, generating a preliminary list of up to 20 problems e.g., Agitation, Caregiver Depression, and Legal and Financial issues. Care managers and caregivers collaborated in prioritizing identified problems. Using as guides a set of protocols developed by the Steering Committee for each problem, a care plan was developed and a set of initial action steps was put in writing for the caregiver and care manager. A more detailed care plan was subsequently developed by the care manager, who initiated actions according to these care plans. Care managers provided ongoing follow-up with caregivers and follow-through for coordination of care with medical care providers and social service agencies, to maintain a proactive approach to care management and to facilitate execution of care plan actions. About every 6 months, a re-assessment could be conducted to re-evaluate the problem list and revise the care plan.
- A standardized set of up to four provider education seminars (approximately 90 minutes total) was provided by a study geriatrician, at each intervention medical clinic. Education topics targeted key aspects of the program that the provider was critical in implementing. Sessions included evaluation of acute behavior changes, depression management in dementia, determination of decision-making capacity, and an overview of the dementia care management program. Dementia care managers attended and were introduced at the initial session, to foster communication among care managers and healthcare providers.
- A web-based communication and decision-support system (CaseTrakker, IMA Technologies) was used by care managers to augment care delivery, coordination, and communication and to maximize efficiency. The software system efficiently tracked multiple cases for care managers and facilitated referrals and information to partnering community agencies. Electronic care plans of standardized evidence-based actions were generated and customized for each patient/caregiver dyad, and shared and accessed by participating care managers to organize, prioritize, and coordinate care on one central document for each patient/caregiver dyad. Summaries of assessments were generated, electronically populated with pertinent assessment data, and forwarded to primary care providers. Additionally, a letter could be generated with results of a positive depression screening for caregivers, for the caregiver to share with their own medical provider, if indicated.
A collaboration of healthcare organizations and community agencies in the Greater San Diego area was formed and, with technical support from UCLA, developed the protocols for a coordinated dementia care management program. The program’s care goals were drawn from existing professional society guidelines for high-quality dementia care. Most of the program components were implemented by nurse- and social worker-care managers who were trained in the new dementia care model, and who followed protocols established by the collaborating organizations. The program was tested in a randomized controlled trial, and it led to broad and clinically meaningful improvements in quality of care for people with dementia and their informal caregivers. In addition, caregivers who were in the intervention group had better self-efficacy, caregiving mastery, and social support, and reported fewer unmet needs for behavior problem assistance and higher satisfaction with the patient’s medical care than caregivers who were in the usual care study arm.
Key search terms:
Care management, collaborative care, chronic care model, web-based information technology system, dementia
2. Intervention Materials
CARE MANAGEMENT TOOLS (http://www.adc.ucla.edu/access/cmtools.htm):
- In-home Assessment Instrument
- Set of structured questions, including several validated measurement instruments, was used to assess for 20 potential problems areas including safety, functional limitations, behavior problems, depression, health concerns such as nutrition, medication management issues, vision, and hearing, and legal and financial concerns such as durable power of attorney for health care and advance directives. Caregivers were assessed for stress, health status and comorbidity, social support, depressed mood, and unmet needs for assistance in providing care to those with dementia.
- ACCESS Program Manual
- Reference manual of a menu of procedures and protocols to address each of 20 problem areas (e.g., Safety, Caregiver Stress), used by care managers to guide selection of care management actions and to develop individualized care plans.
- Self-management Materials and Resources for Reference
- Each caregiver was provided a 3-ring binder for self-management materials and lists of resources related to problem areas identified in the assessment. A contact information sheet for each care manager involved in the care, including a picture of the care manager, was provided to increase accessibility of the care managers and to promote the collaborative nature of the program.
- Care Management Action Algorithms
- Algorithms were created to trigger identification of potential problem areas, based on data entered from the structured assessment of the person with dementia and his/her caregiver; these algorithms were programmed into the care management software.
- Assessment Summary
- A summary of the assessment including cognitive status, presence of problematic behaviors or depressed mood, existence of an advance health care directive, and assessments of wandering risk, driving, and abuse, were generated by the software system and distributed to primary care providers, caregivers, and the patient’s medical record.
- Referral Letters
- Letters to primary care providers (PCPs) summarized pertinent aspects of the assessment and care plan, and indicated specifically if any referral to the PCP was suggested as a result of the assessment and for what kind of problem (for example, work-up of possible delirium, evaluation and management of possible patient depression, or assessment for medical decision-making capacity). Additionally, caregivers were provided letters to take to their own medical providers as necessary to assist with depression diagnosis and treatment, if indicated from the assessment.
- Care Management Software
- This web-based software was selected to provide database support to organize and track multiple clients and decision support to design collaborative care plans to communicate with partnering care managers.
- ACCESS Care Plans
- A template for standardized care plans for each problem area was generated by the care management software and was customized by the care manager in collaboration with the caregiver, to meet patient/caregiver dyad needs as identified from the structured assessment. Care plans were shared among partnering community agency care managers to track and coordinate care, with the goal of reducing fragmentation of care and facilitating execution of care plan actions.
- A copy of a preliminary, individualized care plan (“My Care Plan”) was created and a copy given to the caregiver at the conclusion of the initial home visit. This document delineated actions that the caregiver and care manager each agreed to take as initial next steps.
CARE MANAGER EDUCATION AND TRAINING PROGRAM (http://www.adc.ucla.edu/access/cmtools.htm):
Two days of training was delivered to care managers, including topics such as what makes dementia caregiving unique and an overview of collaborative care, behavior problems, caregiver issues, community resources, and clinical / physician support. A reference manual was developed and used in training. Training also included use of the dementia care management software.
PROVIDER EDUCATION (http://www.adc.ucla.edu/access/presentations.htm):
Provider education on managing targeted dementia care issues and to familiarize providers with the program and introduce them to the care managers was delivered, for a total of about 90 minutes (over one or multiple sessions). Power point slides are available on the program website: http://www.adc.ucla.edu/access/access.swf on the topics of 1) managing acute changes in behavior, 2) recognizing and managing depression, 3) determining capacity for decision-making, and 4) supporting caregivers through a care management program for people with dementia.
Contact information for further information, materials, and training.
Karen Connor, PhD
Ph: 310 268-3975
3. Implementing the Intervention
- Training qualifications and guidelines for those delivering the intervention.
- Care managers can be either social workers or nurses. The level of certification/licensing of the social workers in ACCESS was determined by the participating healthcare organizations. As indicated in the prior section, a two-day training session on the program and on use of the care management software was created and administered to all ACCESS care managers.
A set of provider education sessions (available as slides on the program website) about managing important dementia-related issues and knowledge about the dementia care management program was provided by a study geriatrician, using existing physician education formats at each setting, whenever possible (for example, an ongoing noon seminar for clinic providers).
- There is no existing formal training program but we are interested in finding collaborators for disseminating this intervention, and we could formalize a training program in that context.
Estimated costs of implementing the intervention:
Program costs vary depending on start-up costs and on-going (maintenance) costs, but components of program costs are:
- Information technology (IT) costs for purchasing and supporting a care management software package will vary depending on current pricing of eligible vendors, and on number of users (care managers). Local IT support is needed to maintain the system. Cost of portable laptop computers for administering the in-home assessment electronically are dependent on the number of care managers and clients served.
- Care manager (social worker or nurse) costs will vary by number of clients (patient/caregiver dyads). In the ACCESS study the ratio of patient/caregiver dyads to care manager was about 50:1, but in a system with ongoing care management, this ratio will likely be higher. A 2-day care manager training session is needed.
- Dementia education sessions for physicians, nurse practitioners, and physician assistants can be provided in-person, via slides, and/or teleconference. Cost will vary depending on the venue.
- Patient/caregiver dyad resource binders and print resource materials are estimated at about $5-10 per dyad, with amount dependent on whether some materials can be provided by collaborating community agencies at reduced price.
- Steering/Stakeholder Committee costs depend on the number of meetings required to adapt and implement the program, but initially would be 1-2x monthly for the first 3-6 months, then quarterly. On average each committee member spends 1-2 hours per scheduled meeting, with staff support needed to assemble and coordinate implementation of the recommended adaptations of the program.
Caveats/ limitations on the implementation of this intervention
- No current payment system in private healthcare insurance industry or Medicare exists for professionals who take on the responsibility of assessing and coordinating care (care management).
- Aspects of the program, for example, establishing collaboration protocols with a local Alzheimer’s Association, need to be adapted to different geographic and healthcare settings. Effectiveness of the intervention in populations with more limited educational attainment or in organizations with low levels of readiness to change is unknown.
Any other information you think useful for those interested in implementing the intervention
- A core of individuals (Steering Workgroup or Committee) should be created from the participating organizations to:
- Anticipate the complexity of sharing personal health information (PHI); specifically, the information technology architecture necessary for sharing information in a web-based system among multiple healthcare entities to reduce caregiver exposure to repetitive questioning from various organizations and agencies and to de-fragment care.
- Review performance and trends to address changing circumstances, including acuity of clients for a client to care manager ratio, and the commitment to continuous improvement and sustainability
- Identify training needs for establishing and maintaining effective training to expand the core of care managers
4. For more information
Vickrey B, Mittman B, Connor K, Pearson M, Della Penna R, Ganiats T, DeMonte R, Chodosh J, Cui X, Vassar S, Duan N, Lee M.The effect of a disease management intervention on quality and outcomes of dementia care: A randomized, controlled trial. Annals of Internal Medicine 2006;145:713-26.
Summaries for patients: Can a coordinated system of care improve the quality of care for people with dementia? Annals of Internal Medicine 2006;145:I31.
Editorial: Covinsky KE, Johnston CB. Envisioning better approaches for dementia care. Annals of Internal Medicine 2006;145:780-781.
Chodosh J, Berry E, Lee M, Connor K, DeMonte R, Ganiats T, Rubenstein L, Mittman B, Vickrey BG. Effects of a dementia management intervention on primary care provider knowledge, attitudes, and perceptions of quality of care. Journal of the American Geriatrics Society 2006;54:311-317.
Chodosh J, Mittman BS, Connor KI, Vassar SD, Lee ML, DeMonte RW, Ganiats TG, Heikoff LE, Rubenstein LZ, Della Penna RD, Vickrey BG. Care for patients with dementia: How good is the quality of care? Results from three health systems. Journal of the American Geriatrics Society 2007;55:1260-1268.