Public Health Impact of Dementia

Terrie Fox Wetle, MS, Ph.D.

Associate Dean of Medicine for Public Health

Professor, Health Services, Policy & Practice

Brown University

Outline of Presentation

Impact of Dementia on Service Demand

Formal Service Needs

Costs of Formal Care

Impact on Family and Informal Caregivers

Estimates of Total Costs of Care

Projections and Sustainability

Epidemiology of Dementia

24 million people with dementia world wide in 2001 (Ferri et al., 2001)

Prevalence estimates vary by region Africa 1.6% Eastern Europe 3.9% China 4.0% Latin America 4.6% Western Europe 5.4% North America 6.4%

Dementia Prevalence and Incidence of Alzheimer's Disease Increase with Age

Prevalence of Alzheimer’s Disease appears to double for each 5 years of age

Incidence of Alzheimer’s Disease increases with age 60-64 0.08% /year 65-69 0.13% / year 70-74 0.42 75-79 0.89% 80-84 2.16% 85+ 6.48%

If onset of symptoms delayed for just 5 years, prevalence cut in half.

Need for Services and Care

Time from Diagnosis to Death: 5 to 15 years

Signs and Symptoms: Memory impairment Aphasia – language Apraxia - motor activities Agnosia - recognizing/using familiar objects Executive function –planning, problem solving Inability to perform simplest tasks

Need for Services and Care

Care needs are exacerbated by age-associated comorbidities

Mobility restrictions (arthritis, stroke) Discomfort and pain Urinary/fecal incontinence Diabetes Cardiovascular Disease COPD Cancer

Increasing intensity of care

Needs become more demanding over time Instrumental Activities of Daily Living

Financial management Shopping Driving

Supervision Activities of Daily Living

Bathing, dressing, grooming Toileting, feeding Transfers

Assessment of Function to Determine Need for Services and Care

Retained Function and Capabilities

Comorbidities, especially treatable problems

Behavioral issues

Specific cognitive losses

Home and neighborhood environment

Family and informal resources

Informal Caregiving for Dementia

In the United States….

1 in 7 persons with dementia lives alone

15 million Americans provide unpaid care

Estimated 17 billion hours of care

Estimated value of this care is $210 billion

Caregiving at Home

Address Safety safety proofing home, driving, plan if person wanders

away

Structure daily living to maximize abilities

Plan for monitoring general health

Advance Care Planning and Advance Directives

Educate caregivers problem solving, how to access resources, emotional

support and respite

Ratio of 65+ to those aged 15-64

2010 2020

Italy 46.7 54.5

France 38.9 51.4

Germany 41.2 45.2

Sweden 36.7 45.5

England 25.1 30.0

United States 22.2 29.1

Fewer younger persons available to provide care

AND to pay for care directly or through taxes

Caregiver/Workforce Issues

Diminishing extended families living together

Smaller families, fewer children to provide care

Women in the paid workforce

Labor pools for paid workers Lower paid jobs, “off market” employment

In U.S., often immigrants, in Italy “badanti”

Potentially isolating and physically strenuous job

Type and Amount of Informal CareAlzheimer’s Disease vs Physical Illness

Metlife , 2006

Types of Caregiver Stress Alzheimer’s Disease vs Physical Condition

Metlife , 2006

Factors Contributing to Caregiver Stress

In a multifactorial model, if …

Female… stress is increased by 24% Spousal caregiver 20% Working at paying job 15% Alzheimer’s Disease 14% Each ADL limitation adds 6%

Metlife , 2006

Unmet care needs

Unmet needs of dementia patients and their families are associated with: Nursing home admission Death (Gaugler et al., JAGS, 2005)

Caregivers at higher risk for depression, health problems, and symptoms of stress

Caregivers use of hospitals, emergency room visits and doctor visits increase over time

Caregivers in poorer health had greater decline in health and more doctor visits

National Alliance for Caregiving, 2011

Family Resources

Alzheimer’s Association Caring for a person with dementia

http://alzheimers.org.uk/Caring_for_someone_with_dementia/

National Health Service (UK) NHS Choices – Caring for someone with dementia

http://www.nhs.uk/CarersDirect/guide/kinds/Pages/dementia-intro.aspx

Alzheimer Europe (Italy)http://www.alzheimer-europe.org/%EF%BF%BD%C2%BF%C2%BDEN/

Policy-in-Practice2/Country-comparisons/Home-care/Italy

Annual Dollar Value of Family CaregivingAlzheimer’s Disease vs Physical Condition

Estimated costs by level of care

The Dementia UK report (2007) estimates: £ 16,689 mild dementia, living in community £ 25,877 moderate dementia, living in community £ 37,473 severe dementia, living in community £ 31,296 living in supported accommodations

Estimates include: costs of accommodations (41%) health services (8%) social care services (15%) imputed costs for informal support and lost employment (36%)

Models for Financing Services

Out of Pocket Payments (user charges) Voluntary Insurance (private insurance) Tax-based support

direct or indirect taxes services provided based on need

Social insurance Linked to employment (payroll tax) Services provided based on need

Formal Costs of care in US - 2012

International Costs of care

World-wide cost of dementia in 2010 - $604 billion

Low income nations: 14% of cases, < 1% of costs Middle income nations: 40% of cases, 10% of costs High income nations: 46% of cases, 70% of

costs Alzheimer’s Disease international (Kings College/Karolinska)

Cost estimates by selected countries United Kingdom - £ 34 billion (2011) United States $ 200 billion (2012) Western Europe € 189 billion (2007) Italy € 8.6 billion (2004)

Costs of care - Projections

From 2010 to 2050 In U.S, estimated cost of care in the U.S. will triple to

$1.08 trillion

Dramatic increase in service demand worldwide Greater numbers/larger proportion of old leading to

greater prevalence of dementia

More women in the workforce

Fewer multi-generational families living together

Migration of workers further from home

Strategies to Address Public Health Crisis

Increased investment in research to prevent and treat Alzheimer's disease and other dementias

Improved behavioral interventions for patients and caregivers

Enhanced caregiver support to encourage care at home

Improved models of care and financing of care

Advanced care planning to provide medical care in keeping with patient and family preferences