Who Benefits: Alzheimer s and Dementia

1. Who Benefits:Alzheimer’s and Dementia Katie Maslow Alzheimer’s Association March 17, 2009

2. People with Alzheimer’s/Dementia An estimated 5 million Americans have Alzheimer’s or other dementias Most are age 65 and older, but about 10% (500,000 people) are under age 65 In 2008, an estimated 9.8 million family members and other unpaid caregivers provided 8.4 billion hours of care for people with Alzheimer’s and other dementias Most people with Alzheimer’s and other dementias have not had a diagnostic evaluation and do not have a dementia diagnosis in their medical record

3. High Use and Costs of Medicare Services Medicare beneficiaries age 65+ with Alzheimer’s/dementia: – are 3 times more likely to have a hospital stay than other Medicare beneficiaries age 65+ – have 3 times higher total Medicare costs and 3.2 times higher Medicare hospital costs than other Medicare beneficiaries age 65+ – are 2.4 times more likely to have a preventable hospitalization than other Medicare beneficiaries age 65+ Bynum et all., 2004; Alzheimer’s Disease Facts and Figures, 2008.

4. Major Problems in Managing Their Own Health and Long-Term Care Cognitive impairment associated with dementia results in increasing difficulty in understanding, remembering, and complying with treatment recommendations and locating and arranging needed community services People with dementia have major problems with medication management even in the early stages of their illness Most people with dementia also have other serious medical conditions (CHD, diabetes, CHF) – their dementia greatly complicates the management of these other conditions Families can help with managing care and coordinating services, but they must be involved, informed, and supported to do so

5. Community Care Coordination Research: Medicare Alzheimer’s Disease Demonstration (MADD) 1989-1994 - 8,000+ people with Alzheimer’s/dementia in 8 community sites across the U.S. 2 case management models differing in client caseload (1:100 or 1:30) and funds available for services; services provided in the community by social workers or nurses Results Treatment group families had significantly less unmet need Across all sites, there was a non-significant finding of reduced Medicare expenditures in the treatment group; reductions were significant in 2 sites Yordi et al. 1997; Newcomer et al., 1999; Shelton et al. 2001

6. Care Coordination that Links Medical/Health and Community Care Why is the medical/health care component important? We learned from MADD that it’s essential to involve and work with physicians We learned at the same time that people with dementia use a lot of medical/health care services, and most have other serious medical conditions that require medical/health care Most dementia care coordination interventions conducted over the past 10 years have been based in managed care and integrated health care systems because of a belief that these systems would recognize a potential financial benefit in better dementia care coordination and that they would have the flexibility to provide better management and coordination

7. Research: Kaiser-Alzheimer’s Association Managed Care Project 1998-2000 – 83 Kaiser enrollees with Alzheimer’s/dementia from 2 Kaiser hospital-based care systems Training for Kaiser staff based on the California Dementia Care guidelines; Kaiser “dementia care managers” (social workers) were trained by the Alzheimer’s Association Results Increased family caregiver satisfaction with Kaiser dementia care; Increased staff adherence to dementia care guidelines; Increased referrals to the Alzheimer’s Association Cherry et al. 2004

8. Research: Cleveland Alzheimer’s Managed Care Demonstration 1998-2000 - ~ 150 Kaiser enrollees with dementia or memory loss Telephone care coordination provided by social workers and volunteers from the Cleveland Alzheimer’s Association Chapter Results 1) 89 people with dementia could be interviewed; those in the treatment group had significantly less trouble coping, and a subgroup with more severe impairment had less depression and significantly fewer hospital stays and ER visits 2) 157 family caregivers were interviewed; those in the treatment group had significantly reduced depression Bass et al., 2003; Clark et al. 2004

9. Research: PREVENT 2002-2004 – 153 patients with dementia in 7 university-based health care clinics and a VA health care system “Collaborative care” provided by an interdisciplinary team led by an advanced practice nurse who provided protocol-based information and care coordination Results Treatment group patients had significantly fewer behavioral and psychological symptoms Family caregivers had significantly less depression There was no impact on hospitalization Callahan et al. 2006

10. Research: ACCESS ~ 2002-2004 - 238 patients with dementia in 18 primary care clinics Guideline-based dementia care coordination provided by (mostly) social work care managers in the clinics, with strong links to 3 community agencies (Alzheimer’s Association, Meals-on-Wheels, Caregiver Resource Center Results: Treatment group patients received significantly higher quality of care on 21 out of 23 guidelines and more services from community agencies There was no difference in family caregiver quality of life Vickery et al. 2006

11. Conclusions 10 years of research has shown that care coordination interventions linking medical/health care and community care benefit people with dementia and family caregivers All the tested dementia care coordination interventions involve family caregivers; they are central to the interventions, and they benefit from involvement, information, and support Patient self-management is not a relevant component of care coordination for people with dementia; but research interviews show that people with dementia benefit from information and support they receive through the care coordination intervention Both nurses and social workers have provided effective dementia care coordination interventions

12. Conclusions It’s very hard to put dementia care coordination interventions in place and harder to maintain them To date, only 1 research project has shown reduced hospital and ER visits (and only in a sub-sample of the treatment group) If we could show that dementia care coordination reduces hospital and ER visits, HMOs and integrated health care systems might adopt it But what about fee-for-service Medicare? There’s no obvious way to pay for the essential nurse or social work care coordinator without a new care coordination benefit