Chronic Care Networks for Alzheimer's Disease
A Joint Initiative of the Alzheimer's Association and the
National Chronic Care Consortium
Download CCN/AD Four-Page Description
and Findings*
Download Tools for Early Identification,
Assessment, and Treatment for People with Alzheimer's Disease and Dementia*
National
Co-Directors Announce Interim Evaluation Findings for Chronic Care
Networks for Alzheimer's Disease (CCN/AD), November 2002*
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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:
- Feasibility of
enrolling patients and family caregivers in a program to improve
dementia care
- Ability of providers and staff to implement
standardized tools and protocols
- Training providers in
procedures and philosophies that change the quality of dementia
care
- Forms of partnership between HCOs and Chapters that are
possible, productive, and sustainable
- The impact and influence
of site characteristics on the evolution of care models
- Effects of the Initiative on Chapter and HCO service
utilization
Enrollment
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.
Conclusion
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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