Barbara G. Vickrey, MD, MPH Associate Professor, UCLA Dept of Neurology

1. 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

2. 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…

3. 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

4. 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 orreduced employment

5. 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

6. Example: Impact of Caregiver Support & Education (Mohide et al JAGS 1990) Design: RCT Sample: 86 dementia patient/caregiver dyads Controls: Usual care with VNA visits Experimental: 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

7. Traditional Sources of Selected Evidence-Based Care Processes

8. Evidence-Practice Gapsin Dementia Care

9. 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

10. 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

11. 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

12. Existing Dementia Care Structure Patient Caregiver(s) • Health Care Systems • Primary Care Physicians • Other Care Providers • Community Agencies • Usual Care Providers

13. Structure and Relationships in ACCESSQI 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)

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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

24. 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