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  Africa1.6%  Eastern Europe3.9%  China4.0%  Latin America4.6%  Western Europe 5.4%  North America6.4%

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  % /year  % / year   %  %  % 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 Italy France Germany Sweden England United States 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 “badant i”  Potentially isolating and physically strenuous job

Type and Amount of Informal Care Alzheimer’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 caregiver20%  Working at paying job15%  Alzheimer’s Disease14%  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  National Health Service (UK)  NHS Choices – Caring for someone with dementia  Alzheimer Europe (Italy) Policy-in-Practice2/Country-comparisons/Home-care/Italy

Annual Dollar Value of Family Caregiving Alzheimer’s Disease vs Physical Condition

Estimated costs by level of care  The Dementia UK report (2007) estimates:  £ 16,689mild dementia, living in community  £ 25,877moderate dementia, living in community  £ 37,473severe dementia, living in community  £ 31,296living 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

International Costs of care  World-wide cost of dementia in $604 billion  Low income nations: 14% of cases, < 1% of costs  Middle income nations: 40% of cases, 10% of costs  High income nations: 46% of cases, 70% of costs Alzheimer’s Disease international (Kings College/Karolinska)  Cost estimates by selected countries  United Kingdom - £ 34 billion (2011)  United States$ 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