Getting Evidence-Based
Psychosocial Treatments into
Practice Roundtable:
Evidence & Challenges from a
Dementia Care Management
Quality Improvement Trial
Barbara G. Vickrey, MD, MPH
Associate Professor, UCLA Dept of Neurology
Principal Investigator, ACCESS
June 6, 2004
Burden of Dementia
• Most common cause is Alzheimer’s
disease
• Elderly in US will double between 1990
and 2030; prevalence of dementia rises
with age: 1% of those > age 60, 40% of
those > age 85
• Enormous financial costs: ~$100 billion
total costs in 1994 (largely nursing home
costs)
• Enormous ‘human costs’ (health impacts)
on affected persons and family…
Health Impacts of Dementia
• Disruptive behaviors are common:
Agitation ~50%
Aggression ~20%
Delusions ~33%
Wandering ~25%
• Patient depression is common/underrecognized
• Memory loss complicates management of
comorbid medical conditions
• Safety issues related to driving risks,
wandering,  vulnerability to abuse
• Family (informal) caregivers have high rates of
depression/stress/burden
Ultimate Goals of Optimal
Dementia Care
Health; Satisfaction with Care:
•  patient behavior problems & depression
•  caregiver burden, depression, stress
•  satisfaction with care/care coordination
Cost/Utilization:
•  or delay nursing home use
•  avoidable hospitalizations/ER use
•  indirect costs due to family caregiver
loss of or reduced employment
Evidence-Based Dementia Care
Process/Outcomes Links
•Cholinesterase inhibitors delay cognitive
decline in mild to moderate AD
•Non-pharmacologic approaches can reduce
behavior problems
•Alzheimer’s Assoc. Safe Return Program
can reduce wandering risk and delays in
identification of wanderers
•Caregiver support, education, collaborative
problem-solving and/or respite programs
can delay nursing home placement
Example: Impact of
Caregiver Support & Education
(Mohide et al JAGS 1990)
Design:
Sample:
Controls:
Experimental:
RCT
86 dementia patient/caregiver dyads
Usual care with VNA visits
Education; encourage support grp
copy of 36 Hour Day; 4 hrs respite care/wk
6-month outcomes, control vs. experimental
• no difference in % placed in long term care: 55 vs. 50%
• time to placement: 10.4 vs. 17.2 weeks (p<0.05)
• caregiver quality of life, depression, & anxiety not
different
Traditional Sources of Selected
Evidence-Based Care Processes
Process
Cholinesterase
inhibitors
Behavior problems
Medical
system
X
x
Safe Return Program
Caregiver support,
education, respite
Community
agencies
X
X
x
X
Evidence-Practice Gaps
in Dementia Care
100
90
80
70
% ever
receiving 60
some or all 50
they needed 40
of service 30
20
10
0
Alz Assoc Caregiver
service(s) Ctr service
Support
group
Respite
care
health plan sample with dementia, mean duration 2.5 yrs
Barriers to Adherence to
Dementia Care Guidelines
Time constraints of physicians/lack of
reimbursement for other level providers
Lack of care coordination especially
between traditional medical system and
community agencies
Lack of proactive follow-up to reduce
risk of escalation of problems
Patients (caregivers) inadequately
educated/activated to manage their
illness
Project Partners:
Kaiser Permanente San Diego
Scripps Clinic
University of California San Diego Healthcare
Meals-on-Wheels Greater San Diego
Alzheimer’s Association San Diego Chapter
Southern Caregiver Resource Center
University of California, Los Angeles
Funding Agencies:
California HealthCare Foundation, California Department of
Aging, California Department of Health Services
ACCESS Study Goals
Design evidence-based care management
intervention for improving dementia care
quality
Implement the intervention in diverse health
care organizations, partnering with key
community agencies that focus on
dementia/caregivers
Test the intervention’s impacts on quality of
dementia care, as measured by adherence to a
set of dementia care guidelines
Existing Dementia Care Structure
Patient
Caregiver(s)
Health Care Systems
•Primary Care Physicians
• Other Care Providers
Community Agencies
•Usual Care Providers
Structure and Relationships in
ACCESS QI Model
Patient
Caregiver(s)
Health Care Orgs
• Dementia Care Managers
• Primary Care Physicians
• Other Care Providers
Community Agencies
• Dementia Care Managers
• Usual Care Providers
IT (CaseTrakker)
Multi-component ACCESS
Intervention
 Dementia care managers
• at each health care organization and each
community agency
• home visits: structured assessments
triggering care actions
• proactive, regular follow-up
 Formal procedures for referral to and
communication with community agencies
and with primary care MDs
ACCESS Intervention (cont’d)
 Identification of local champions
 Collaborative development of care plan
with caregivers/caregiver education/
caregiver activation
 Internet-based case management
software:
• Automated triggers generating problem lists
• Templates for care planning/PCP
communication
• Tracking system to follow multiple cases
• Pen-tablets for home assessments
 Provider education
ACCESS Study Design
Pre-post, experimental design with 18month follow-up
Group-level randomized trial, with clinic as
randomization unit
Collaboration of 3 healthcare orgs and 3
community agencies focusing on persons
with dementia or their caregivers
Medicare pts >65 yrs, with dementia
408 pairs of patients & caregivers
238 – intervention; 170 - usual care
Key Findings to Date
ACCESS intervention group had significantly
higher adherence to 24 of 30 dementia care
guidelines compared to the usual care group
(p<0.05) at 12-18 month follow-up, such as:
Appropriate management of behavior
problems
Receipt of respite services
Enrollment in Safe Return Program
Development of a care plan
Cholinesterase inhibitor use
QI Implementation Activities
• Regular meetings of Steering Cmte of leadership
of the healthcare orgs, community agencies, and a
consumer (caregiver), rotated across sites:
– Selected which dementia care guidelines to target,
through formal consensus methods
– Shared information to inventory services and
assessment tools and to decide on each org’s roles in
the ACCESS model
– Subcommittees helped design assessment, care plan,
and clinical management procedures
– Selected a project logo
– Evaluated case management software options
– Participated in annual site visits from funder
QI Implementation Activities
(cont’d)
• Letters of support from senior leadership
at all organizations
• Monthly meetings of dementia case
managers from six organizations:
– Resolve care coordination issues
– Identify and address areas of unmet need,
I.e., invited speakers on key topics, shared
print or electronic resources, etc.
• Advisory Board of consumer reps,
researchers, state agency rep
Challenges Encountered in
Implementation of the Research
• Complexity/burden of IRB approvals and
recruitment procedures that protect privacy
• Proactive/preventive model was a paradigm
shift (from reactive/crisis management) for
care managers, their supervisors, and
caregivers
• Creating solutions to coordination issues
represented a cultural change for
participating organizations (example: Safe
Return Program) & required research team
support
Challenges Encountered in
Implementation (cont’d)
• While no major health care org changes
occurred during the project, some
changes in staffing and in health plan
inclusion required flexibility to modify
recruitment/enrollment protocols
• Differences in IT systems across
organizations made implementing a
common web-based software complex
• Human resource policies varied in
restrictiveness across orgs, introducing
delays in case manager hiring
Challenges to Sustainability
• Evaluation outcome data - including
cost-effectiveness - not available at
the time of decisions about
sustainability within healthcare
organizations (for whom most program
costs would be borne)
• Insufficient attention during the project
by project team/ Steering Cmte to
building awareness/ promoting
ACCESS at higher levels within
healthcare organizations
Challenges to Replication
• Most expensive ongoing component of
program is care managers, but currently
no reimbursement mechanisms exist
• Full evaluation data not yet available,
including impacts on health outcomes
and analyses of relative impact of
intervention components
• ACCESS model is already designed and
tested, but multi-component intervention
is still complex and requires adaptation,
care manager training, and IT support
COMMUNITY AND RESEARCH
COLLABORATORS
• UCLA
–
–
–
–
–
–
–
Karen Connor, RN, MBA
Susan Ettner, PhD
Joshua Chodosh, MD, MPH
Martin Lee, PhD
Marjorie Pearson, PhD
Xin-ping Cui, PhD
Brian Mittman, PhD
• Kaiser Permanente
–
–
–
–
–
Pam Reger
Terry Hoppe
Lisa Heikoff, MD
Sonda Kaldor, MSW
Sheila Hale, LCSW
• UCSD Healthcare
– Ted Ganiats, MD
– Carol Taylor, RN, MSN
Scripps Clinic
Robert DeMonte MD
Micheline Rochel, MSW
Vickie Dandridge
Alzheimer’s Association
Tom Pamilla
Lucia Eto
Southern Caregiver Resource Ctr
Lorie Van Tilburg, MSW
Edward Delaloza, MSW
Meals-on-Wheels San Diego
Roger Bailey, PhD
Charles Fleischman
Consumer Representatives
Margo Fox Picou
Tom Gillette, PhD