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THE RISK and COSTS of SEVERE COGNITIVE IMPAIRMENT at OLDER AGES: Literature Review and Projection Analyses

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THE RISK and COSTS of SEVERE COGNITIVE IMPAIRMENT at OLDER AGES: Literature Review and Projection Analyses U.S. Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation Office of Behavioral Health, Disability, and Aging Policy TTHHEE RRIISSKK AANNDD CCOOSSTTSS OOFF SSEEVVEERREE CCOOGGNNIITTIIVVEE IIMMPPAAIIRRMMEENNTT AATT OOLLDDEERR AAGGEESS:: LLIITTEERRAATTUURREE RREEVVIIEEWW AANNDD PPRROOJJEECCTTIIOONN AANNAALLYYSSEESS January 2021 Office of the Assistant Secretary for Planning and Evaluation The Assistant Secretary for Planning and Evaluation (ASPE) advises the Secretary of the U.S. Department of Health and Human Services (HHS) on policy development in health, disability, human services, data, and science; and provides advice and analysis on economic policy. ASPE leads special initiatives; coordinates the Department's evaluation, research, and demonstration activities; and manages cross-Department planning activities such as strategic planning, legislative planning, and review of regulations. Integral to this role, ASPE conducts research and evaluation studies; develops policy analyses; and estimates the cost and benefits of policy alternatives under consideration by the Department or Congress. Office of Behavioral Health, Disability, and Aging Policy The Office of Behavioral Health, Disability, and Aging Policy (BHDAP) focuses on policies and programs that support the independence, productivity, health and well-being, and long-term care needs of people with disabilities, older adults, and people with mental and substance use disorders. NOTE: BHDAP was previously known as the Office of Disability, Aging, and Long-Term Care Policy (DALTCP). Only our office name has changed, not our mission, portfolio, or policy focus. This report was prepared under contract #HHSP233201600024I between HHS’s ASPE/BHDAP and the Urban Institute. For additional information about this subject, you can visit the BHDAP home page at https://aspe.hhs.gov/bhdap or contact the ASPE Project Officers, at HHS/ASPE/BHDAP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C., 20201; [email protected], [email protected], [email protected]. THE RISK AND COSTS OF SEVERE COGNITIVE IMPAIRMENT AT OLDER AGES: Literature Review and Projection Analyses Melissa M. Favreault Richard W. Johnson Urban Institute January 2021 Prepared for Office of Behavioral Health, Disability, and Aging Policy Office of the Assistant Secretary for Planning and Evaluation U.S. Department of Health and Human Services Contract #HHSP233201600024I The opinions and views expressed in this report are those of the authors. They do not reflect the views of the Department of Health and Human Services, the contractor or any other funding organization. This report was completed and submitted in May 2020. TABLE OF CONTENTS ACKNOWLEDGMENTS ................................................................................................................................. iv ACRONYMS ................................................................................................................................................... v ABSTRACT .................................................................................................................................................... vii INTRODUCTION ............................................................................................................................................ 1 MOTIVATION ................................................................................................................................................ 3 KEY DEFINITIONS .......................................................................................................................................... 4 PREVIOUS LITERATURE................................................................................................................................. 5 Assessment and Measurement .............................................................................................................. 5 Incidence and Prevalence Studies .......................................................................................................... 7 Longitudinal Studies: Lifetime Impairment Risk, Life Expectancy with Cognitive Impairment, Relationship between Cognitive Impairment and Mortality ...................................... 8 Studies of Cross-Sectional and Lifetime Costs of Cognitive Impairment ............................................... 9 Projection Studies ................................................................................................................................. 10 Community-Based Studies ................................................................................................................... 12 PROJECTION METHODS .............................................................................................................................. 13 Health and Disability Models................................................................................................................ 13 Spending for Health Care and Long-Term Services and Supports ........................................................ 14 Valuing Unpaid Family Care.................................................................................................................. 15 PROJECTION RESULTS................................................................................................................................. 16 Baseline Validation ............................................................................................................................... 16 Risks ...................................................................................................................................................... 18 Costs for Paid Services and the Value of Unpaid Care ......................................................................... 19 CONCLUSIONS AND POLICY IMPLICATIONS .............................................................................................. 21 FIGURES AND TABLES ................................................................................................................................. 22 NOTES ......................................................................................................................................................... 55 REFERENCES ................................................................................................................................................ 58 ABOUT THE AUTHORS ................................................................................................................................ 73 i LIST OF BOXES, FIGURES AND TABLES BOX 1. Selected Terms Related to Cognitive Impairment ................................................................. 4 FIGURE 1. Alternative Estimates of the Age-Specific Prevalence of CI at Older Ages .......................... 22 FIGURE 2. Alternative Projections of the Number of Cognitively Impaired Adults in the US Using Different Measures of SCI, 2010-2060 .................................................................. 23 FIGURE 3. Comparison of Alternative Estimates of the Age-Specific Prevalence of CI at Older Ages Using 5-Year Age Bands with DYNASIM Projections: Prevalence of Dementia Rises Markedly with Age ................................................................................. 24 FIGURE 4. Comparison of Alternative Estimates of the Age-Specific Prevalence of CI at Older Ages Using 10-Year Age Bands with DYNASIM Projections: Prevalence of Dementia Rises Markedly with Age ................................................................................. 25 FIGURE 5. Alternative Projections of Number of Cognitively Impaired Adults in the US Using Different Measures of SCI at Older Ages, Including DYNASIM Projections, 2010-2060 ........................................................................................................ 26 TABLE 1. Selected Studies of the Cross-Sectional Prevalence of CI: US and Other Wealthy Countries ................................................................................................................... 27 TABLE 2. Selected Studies of the Cross-Sectional Incidence of CI: US and Other Wealthy Countries ................................................................................................................... 31 TABLE 3. Selected Studies of the Long-Range Likelihood of CI, Remaining Life Expectancy with CI, Duration of CI, and Other Longitudinal Metrics ...................................... 33 TABLE 4. Selected Studies of the Relationship between CI and Mortality Rates in the US ................... 38 TABLE 5. Selected Studies of the Costs of CI in the US .......................................................................... 39 TABLE 6. Selected Studies of the Prevalence and Intensity of Caregiving for People with CI in the US ...................................................................................................................... 42 TABLE 7. Estimates from Selected Studies of the Cost of CI in the US: Using Consistent Wage-Indexed Dollars ............................................................................................................. 43 ii TABLE 8. Selected Studies Based on Long-Range Models of Cognitive Status ....................................... 44 TABLE 9. Selected Studies of the Effects of Future Interventions on CI in the US ................................. 46 TABLE 10. Miscellaneous Community-Based Studies Related to CI and Performance in the
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