Getting Evidence-Based Psychosocial Treatments into

Practice Roundtable: Evidence & Challenges from a Dementia Care Management Quality Improvement Trial

Barbara G. Vickrey, MD, MPHAssociate 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: RCTSample: 86 dementia patient/caregiver dyads Controls: Usual care with VNA visitsExperimental: 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 Medical system

Community agencies

Cholinesterase inhibitors

X

Behavior problems x X

Safe Return Program X

Caregiver support, education, respite

x X

Evidence-Practice Gapsin Dementia Care

0102030405060708090

100

% ever receiving

some or all they needed

of service

Alz Assocservice(s)

CaregiverCtr service

Supportgroup

Respitecare

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

Kaiser Permanente San DiegoScripps Clinic

University of California San Diego HealthcareMeals-on-Wheels Greater San Diego

Alzheimer’s Association San Diego ChapterSouthern Caregiver Resource CenterUniversity of California, Los Angeles

Funding Agencies:California HealthCare Foundation, California Department of

Aging, California Department of Health Services

Project Partners:

ACCESS Study GoalsDesign 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 Patient Caregiver(s)Caregiver(s)

Health Care SystemsHealth Care Systems

•Primary Care PhysiciansPrimary Care Physicians• Other Care ProvidersOther Care Providers

Community AgenciesCommunity Agencies

•Usual Care ProvidersUsual Care Providers

Structure and Relationships in ACCESS QI Model

Patient Patient Caregiver(s)Caregiver(s)

Health Care OrgsHealth Care Orgs• Dementia Care ManagersDementia Care Managers

• Primary Care PhysiciansPrimary Care Physicians• Other Care ProvidersOther Care Providers

Community AgenciesCommunity Agencies• Dementia Care ManagersDementia Care Managers

• Usual Care ProvidersUsual 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 18-month

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

problemsReceipt of respite servicesEnrollment in Safe Return Program Development of a care planCholinesterase 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 Scripps Clinic– Karen Connor, RN, MBA Robert DeMonte MD– Susan Ettner, PhD Micheline Rochel, MSW– Joshua Chodosh, MD, MPH Vickie Dandridge– Martin Lee, PhD– Marjorie Pearson, PhD Alzheimer’s Association– Xin-ping Cui, PhD Tom Pamilla– Brian Mittman, PhD Lucia Eto

• Kaiser Permanente Southern Caregiver Resource Ctr– Pam Reger Lorie Van Tilburg, MSW– Terry Hoppe Edward Delaloza, MSW– Lisa Heikoff, MD – Sonda Kaldor, MSW Meals-on-Wheels San Diego– Sheila Hale, LCSW Roger Bailey, PhD Charles Fleischman

• UCSD Healthcare – Ted Ganiats, MD Consumer Representatives– Carol Taylor, RN, MSN Margo Fox Picou Tom Gillette, PhD