Chronic Care Networks for Alzheimer's Disease
A Joint Initiative of the Alzheimer's Association and the National Chronic Care Consortium
Since 1995, the Alzheimer's Association and the National Chronic Care Consortium (NCCC) have worked together to develop, implement, and evaluate a model of coordinated medical care and supportive services for people with Alzheimer's disease and other dementias. The two national organizations believed that the Initiative would improve outcomes for people with these conditions and their family caregivers by solving problems of people with possible dementia with identification, diagnosis, medical and nonmedical care coordination, and family caregiver support.
Development of the CCN/AD Initiative
The partnership drew on each organization's unique expertise and resources. For the Alzheimer's Association, it provided access to a group of nationally recognized health care systems committed to providing high-quality integrated care for people with chronic illness. For NCCC, it provided an opportunity to implement and test procedures for care system integration developed by its members with ongoing input from advocates who strongly represent the values and perspectives of patients and families.
In late 1996 the Initiative's request for proposals was sent to all 30 NCCC member organizations and their local Alzheimer's Association Chapters. Of 15 proposals received, eight were selected on the basis of multiple criteria, including a strong working relationship between the Chapter and the NCCC organization. The selected sites were in Minneapolis/St. Paul; Philadelphia; Upstate New York; Denver; Sacramento; San Francisco; Troy/Albany; and Portland, Oregon.1 These sites represented a wide array of organizational and risk sharing arrangements--an important factor for replication.
The national partners agreed that Initiative goals were most likely to be achieved if designed by the people and organizations implementing them. Thus, sites were selected first. After sites were selected, a leadership committee composed of representatives from all the participating organizations at each site began an intensive 6-month process to define the Initiative purpose, guiding principles, and essential features to be included in the Initiative model.
The National Model
The national model, called the Chronic Care Networks for Alzheimer's Disease (CCN/AD) Initiative, was developed by advisory groups composed of physicians, other health care professionals, and Chapter staff from each site. Advisory groups relied on available research findings and the group members' clinical expertise and extensive experience working with people with dementia and their families. They wanted a model that would be feasible for real-world health care systems and take advantage of the incentives created by risk-based financing. The model was intended to address the needs of the person with dementia as a whole, not just his or her dementia, and to support the person and family in all stages of the person's illness. The four components of the model are as follows:
1. Identification: The model includes a 2-step2 process to identify individuals who should receive a diagnostic assessment: a. triggers to identify individuals who may have dementia, and b. a brief family questionnaire to identify individuals who may have dementia.
2. Diagnostic assessment: Individuals identified by the first component receive a diagnostic assessment including medical and other histories, physical examinations, mental status tests, lab tests, and imaging procedures. These examinations and tests are divided into three categories: those that should be done for every person; those that should be done for every person unless there is a good reason for not doing them; and those that should not be done unless there is a good reason for doing them.
3. Blueprints for Ongoing Medical and Nonmedical Care Management: Each site developed care management protocols but the CCN/AD advisory groups created blueprints to help sites develop the protocols. The blueprints identify desired outcomes, areas for assessment, areas for goal formation, and possible interventions in six domains (e.g., medical treatment, nutrition, and advance directives) for three time periods: initial identification, longitudinal monitoring and treatment, and end of life.
4. Programs and Materials for Caregiver Information and Support: Based on a model of tasks faced by family caregivers over time, Initiative objectives for families were identified for six phases of caregiving (e.g., prediagnostic, role change, and end-of-life). Sites used grids listing the objectives to identify programs and materials needed to achieve the objectives and assign responsibility for specific programs and materials to particular entities at that site.
From the outset, the national organizations, leadership committee, and advisory groups anticipated there would be considerable variation in the way the national model was implemented across sites because of differences in participating organizations, provider arrangements, and market conditions at each site. The Initiative was intended to function as a "learning laboratory" so revisions could be made if problems were identified during implementation. This approach uses participatory development and frequent feedback from multiple sources to allow ongoing corrections by site staff. The "learning laboratory" approach was chosen to maximize the likelihood the model (with revisions as needed) would be truly feasible for real-world health care settings. Participants had many different reactions to this approach, which was a new experience for many.
The national partners and participating organizations expected the Initiative would result in earlier and more consistent identification and diagnosis of Alzheimer's disease and dementia, better medical and nonmedical care management, and more timely connections of patients and families to community agencies which provide supportive services. In turn, it was expected these improvements would increase patient and family caregiver satisfaction with health care and better quality of life outcomes. Although there was no guarantee that the Initiative would result in reduced health care costs, the national partners and participating organizations expected that better outcomes could be achieved without increasing overall costs for patients, families, health care systems, or managed care organizations.
The National Evaluation
Funding from The Retirement Research Foundation (RRF) enabled the CCN/AD to implement high-quality, mixed-method national evaluation across participating organizations. Three components of the national evaluation were supported by RRF: 1) the CCN/AD Uniform Database, 2) Site Visits, and 3) Provider Survey. A fourth component of the national evaluation, the Patient and Caregiver Outcome Survey, was supported by a grant from The Robert Wood Johnson Foundation.
The CCN/AD Uniform Database is a computerized information system developed for the Initiative to capture demographic and dementia assessment data on Initiative enrollees and help the evaluation team study patterns in Chapter and health care organization (HCO) service use. It was implemented in all 13 CCN/AD sites and subsites. Members of the national evaluation team collaborated with CCN/AD clinicians and administrators to establish the content of the Database.
The Site Visit component of the evaluation involved qualitative data analysis of in-depth structured interviews with clinical and administrative leaders, content analysis of documents and operational protocols, and direct observation. Each site had four qualitative data collection points over the course of the Initiative. Topics covered specific components of the CCN/AD logic model, such as partnerships, provider education, dementia identification and assessment, and ongoing care. Nearly 90 discrete site characteristics were identified and used in subsequent analyses.
The Provider Survey component was a three-wave survey administered at nine-month intervals to all types of providers who received CCN/AD instruction and orientation or were involved with implementing the care model. Respondents were affiliated with both the HCOs and Chapters. The Survey focused on characteristics of providers and their perceptions of various aspects of the CCN/AD care model and its impact on their ability to care for dementia patients and family caregivers.
Learnings for the Field of Gerontology
CCN/AD is one of the largest national demonstrations undertaken to date for integration of care for dementia patients and their family caregivers. Many findings from this demonstration will advance current knowledge, including information related to:
The original estimate was that the evaluation would include 800 patients who would enroll in the CCN/AD. By the close of enrollment in mid-2002 there were over 1400 patients participating. Additionally, over 1,300 primary family caregivers of these patients also were enrolled in the Initiative. The large number of enrolled caregivers was consistent with the Initiative's objective to call attention to the needs of family members particularly for HCOs that traditionally focus only on patients. Almost 96% of the patients enrolled had an identified primary family caregiver.
Enrollment of all types of care providers from HCOs and Chapters also exceed projections in the original estimate. The final number of providers trained and implementing CCN/AD exceeded 950, with original projections of 775. This meant that the number of providers who agreed to take part in the Provider Survey also exceeded projections. However, a substantial number of providers did not participate in the second wave of the provider survey, the main reason for attrition being changes in jobs and job responsibilities.
Dementia Identification and Dementia Assessment
Two major components of the CCN/AD care model were the Early identification Tools and Initial Dementia Assessment Protocol. The Early Identification tools were designed to improve clinicians' abilities to flag patients at high-risk of dementia. The Initial Dementia Assessment Protocol provided a minimum standard for diagnosing this often under-diagnosed condition. Download Tools for the Assessment and Treatment of Dementia in Managed Care Settings
Of the 1446 patients enrolled in CCN/AD, the Uniform Database included data from the initial dementia assessment for 98.5% (n=1424) of enrollees. This shows it is possible to successfully incorporate a standardized dementia diagnostic protocol into usual health care. However, site visit findings also indicated that successful incorporation of the CCN/AD early identification and assessment tools depended on having a central resource person, such as a dementia care manager, to educate providers on these procedures and assure that tools are completed.
The Provider Survey also showed that clinicians from HCOs had positive attitudes toward and more frequently used the patient components of the Initial Dementia Assessment Protocol compared to the caregiver components. Reluctance to use the caregiver tools was disappointing since they represented the goal of increasing attention of health care providers to the needs of family members. Overall, providers felt CCN/AD tools improved care, were easy to use, and were feasible to use even in time-pressed clinical settings.
Provider Training and Education
Providers' willingness to adopt new ways of diagnosing and caring for dementia was a product of the training efforts that assured them that there are potentially effective interventions to recommend, such as drug treatments and quality support and information services. It required comprehensive effort toward organizational advocacy, understanding provider motivations and disincentives, the constant presence of a supportive education agent, and a variety of education formats and messages delivered repeatedly. Most providers reported having a variety of training and education sessions in CCN/AD and felt these sessions gave them a complete understanding of the Initiative. Additionally, different training formats were related to different outcomes. For example, attending formal group presentations increased providers' feelings that CCN/AD enabled them to provide better care for their patients and caregivers.
HCO and Chapter Partnerships and Joint Care Management
Partnerships can be mutually beneficial for health care organizations and Alzheimer's Association Chapters and the families they serve, but they are complex interventions requiring technical support, hard work, and fortunate circumstances. Site visit data suggest participants felt there were many benefits of partnerships, but not all sites intend to continue the partnership after the grant period. Post-Initiative sustainability of the partnerships differed by type of health plans, with staff-based HMOs or VA medical centers more likely to continue the collaboration compared to independent provider networks. A thorough understanding of the goals of the partnership, as well as sufficient time at the outset for each partner to learn about the other, also has an impact on sustainability.
An indicator of partnerships' success is increased frequency of patients and caregivers using Chapter services. In usual care, only only a small portion of families dealing with dementia use any Chapter services. In contrast, results from the CCN/AD Uniform Database showed approximately 65% of families (n=936) received some Chapter service within the three months of enrollment, and 77% (n=1109) received at least one Chapter service within the first six months. Overall, there were over 8000 Chapter service episodes, with approximately 87% of families having at least one Chapter contact. One intriguing finding was that types of Chapter services used varied significantly depending on whether the HCO was a staff model or independent.
Health Care Utilization Findings
The healthcare utilization results are still being analyzed. The really exciting news is that, for the first time, we soon will have empirical indicators of healthcare and community service use within a comprehensive, integrated program model from which to learn and guide the establishment of more rigorous examinations. And we will better understand how patient/caregiver satisfaction relates to use of healthcare and family support services.
The final evaluation reports will not be complete until September 2003. However, the Alzheimer's Association and the National Chronic Care Consortium are very pleased with the learning provided by this Initiative to date. Recalling the initial expectation for the CCN/AD:
"The national partners and participating organizations expected the Initiative would result in earlier and more consistent identification and diagnosis of Alzheimer's disease and dementia, better medical and nonmedical care management, and more timely connections of patients and families to community agencies which provide supportive services. In turn, it was expected these improvements would increase patient and family caregiver satisfaction with health care and better quality of life outcomes. Although there was no guarantee that the Initiative would result in reduced health care costs, the national partners and participating organizations expected that better outcomes could be achieved without increasing overall costs for patients, families, health care systems, or managed care organizations."
We believe that these expectations have been substantially met.
1 The Portland site withdrew in 1998 because of financial losses and competing organizational commitments in the participating managed care organization.
2 The first component of the CCN/AD model originally included a third step, a "high-risk screening tool" that was intended to rule out individuals who were identified by the triggers or questionnaire but were very unlikely to have dementia and so did not need a diagnostic assessment. The project leadership committee voted to eliminate this part of the first component because some sites were using it incorrectly, as a tool to "screen in" people with possible dementia. Used in this way, the tool identifies far too many false positives to be clinically useful.
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