Barriers to Quality End of Life Care for People with Dementia Steve McConnell, PhD Alzheimer s s Association Washington, DC Office Alliance for Health Care Reform Briefing on End of Life Care June 8, 2007 Alzheimer s s Disease (AD) Prevalence 5 million+ people in the U.S. have Alzheimer s disease 4.9 million people over age 65 200,000-500,000 people < 65 with early onset Alzheimer s s and other dementias Someone develops Alzheimer s s every 72 seconds 1
Estimated Number Of New Alzheimer Cases (In Thousands) New Cases in Thousands 1200 1000 800 600 400 200 0 959 820 491 615 377 411 454 1995 2000 2010 2020 2030 2040 2050 Year Source: Hebert et al. (2001). Alzheimer s Disease and Associated Disorders, 15(4), 169-173. Alzheimer s s Disease a Leading Cause of Death Centers for Disease Control reported mortality rates (2004): Alzheimer s s is the 5 th leading cause of death for people 65+ 7 th leading caused of death for all ages 2
Mortality Rates for Alzheimer s s and other Leading Causes of Death (2000-2004) 2004) Deaths attributed to: Alzheimer s up 33% Heart Disease - down 8% Breast Cancer - down 2.6% Prostate Cancer down 6.3% Stroke - down 10.4% 35 30 25 20 15 10 5 0-5 -10-15 Breast Cancer Heart Disease Alzheimer's Stroke Prostate Cancer Source: U.S. Centers for Disease Control and Prevention, National Center for Health Statistics, Mortality Data From the National Vital Statistics System. Percent of Beneficiaries with Dementia Having Selected Co-Existing Conditions, 2000 Percent of Beneficiaries 35% 30% 25% 20% 15% 10% 5% 0% 29% 28% 23% 17% CHD CHF Diabetes COPD CHD = Coronary Heart Disease CHF = Congestive Heart Failure COPD = Chronic Obstructive Pulmonary Disease Source: Centers for Medicare & Medicaid Services, FY 2000 Medicare claims data for a 5% random sample of Medicare beneficiaries. 3
Average Medicare for People with Reported Dementia, Diabetes, or Both, 2000 $20,000 $18,000 $16,000 $14,000 $12,000 $10,000 $8,000 $6,000 $4,000 $2,000 $0 Total Hospital SNF Home Health Dementia Diabetes Both Source: Centers for Medicare & Medicaid Services, FY 2000 Medicare claims data for a 5% random sample of Medicare beneficiaries. Average Medicare for People with Reported Dementia, Congestive Heart Failure (CHF), or Both, 2000 $25,000 $20,000 $15,000 Dementia CHF Both $10,000 $5,000 $0 Total Hospital SNF Home Health Source: Centers for Medicare & Medicaid Services, FY 2000 Medicare claims data for a 5% random sample of Medicare beneficiaries. 4
Late Stage Dementia Issues Dementia leads to complete dependence (e.g., incontinence, inability to swallow) and death. Individual s s inability to make decisions or communicate means loss of control over care decisions. Many families, providers, and professionals do not understand the progression and severity of dementia. Dementia caregivers experience the most stress and get little relief. End of Life Settings 67% of dementia-related deaths occur in nursing homes. Frequent transfers between nursing homes & hospitals. Hospice underused but growing for Alzheimer s s Disease population In 2000, AD = 6.3% of hospice pop with average length of stay of 44.9 days In 2005, AD = 9.5% of hospice pop with average length of stay of 72.4 days 5
Policy Barriers and Solutions: Management Barrier: Ineffective management of dementia care Inappropriate transfers (financial incentives) Inadequate physician payment for time required Aggressive interventions vs palliative care Diagnosis and orders not following the person Solution: Appropriate physician office payment for assessment and chronic care management Policy Barriers and Solutions: Access Barrier: Inadequate access to palliative care Hospice medical eligibility criteria Duration of benefit Solutions: Alternative hospice medical eligibility criteria and palliative care benefit 6
Policy Barriers and Solutions: CMS Concerns Barrier: CMS concern about hospice use Increasing use by people with dementia Hospice and nursing homes may duplicate services. Solution: CMS collect data on use of hospice and review use by setting Policy Barriers and Solutions: Knowledge Barrier: Consumers and providers inadequate knowledge about the progression and terminal nature of dementia Solutions: Education & training Medical training Consumer education Nursing and nurse aide training 7
Policy/Practice Actions The Geriatric Assessment & Chronic Care Coordination Act - S 1340/ HR 2244 (Lincoln Bill) CMS review of use of Medicare hospice benefit State and federal training requirements Dementia care practice recommendations. Alzheimer s s Association Resources End of Life Care for People with Dementia in Residential Care Settings (http://www.alz.org/professionals_and_researcher s_dementia_care_practice_recommendations.asp) Barriers to Quality End of Life Care for People with Dementia in Residential Care (in packet) Dementia care practice recommendations on end of life care (August 2007) 8