, Volume 29, Issue 2, pp 141–156 | Cite as

A Systematic Review to Assess the Policy-Making Relevance of Dementia Cost-of-Illness Studies in the US and Canada

  • Mark Oremus
  • S. Carolina Aguilar
Review Article Cost-of-Illness Studies and Dementia Policy Making


A systematic review of dementia cost-of-illness (COI) studies in the US and Canada was conducted to explore the policy-making relevance of these studies.

MEDLINE, CINAHL, EconLit, AMED and the Cochrane Library were searched from inception to March 2010 for English-language COI articles. Content analysis was used to extract common themes about dementia cost from the conclusions of articles that passed title, abstract and full-text screening. These themes informed our exploration of the policy-making relevance of COI studies in dementia.

The literature search retrieved 961 articles and data were extracted from 46 articles. All except three articles reported data from the US; 27 articles included Alzheimer’s dementia only. Common themes pertained to general observations about dementia cost, cost drivers in dementia, caregiver cost, items that may lower dementia cost, social service cost, Medicare and Medicaid cost, and cost comparisons with other diseases.

The common themes suggest policy-oriented research for the future. However, the extracted COI studies were typically not conducted for policymaking purposes and they did not commonly provide prescriptive policy options. Researchers and policy makers need to consider whether the optimal research focus in dementia should be on programme evaluations instead of more COI studies.


Dementia Indirect Cost Informal Caregiver Respite Care Institutionalize Patient 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



Mark Oremus holds a Career Scientist Award from the Ontario Ministry of Health and Long-Term Care. He is also the McLaughlin Professor of Population and Public Health at McMaster University. S. Carolina Aguilar is a doctoral candidate in the Health Research Methodology Program at McMaster University. Her doctoral studies are supported by a research scholarship award from the Canadian Researchers at the End of Life Network (CARENET).

The authors confirm that the paper is an accurate representation of the results. The authors have no conflicts of interest to report.


  1. 1.
    Kester MI, Scheltens P. Dementia: the bare essentials. Pract Neurol 2009; 9: 241–51PubMedCrossRefGoogle Scholar
  2. 2.
    Wolfson C, Wolfson DB, Asgharian M, et al. A reevaluation of the duration of survival after the onset of dementia. N Engl J Med 2001; 344: 1111–6PubMedCrossRefGoogle Scholar
  3. 3.
    Jonsson L, Wimo A. The cost of dementia in Europe: a review of the evidence, and methodological considerations. Pharmacoeconomics 2009; 27 (5): 391–403PubMedCrossRefGoogle Scholar
  4. 4.
    Rice DP, Fillit HM, Max W, et al. Prevalence, costs, and treatment of Alzheimer’s disease and related dementia: a managed care perspective. Am J Manag Care 2001; 7: 809–18PubMedGoogle Scholar
  5. 5.
    Bloom BS, de Pouvourville N, Straus WL, et al. Cost of illness of Alzheimer’s disease: how useful are current estimates? Gerontologist 2003; 43: 158–64PubMedCrossRefGoogle Scholar
  6. 6.
    Jonsson L, Berr C. Cost of dementia in Europe. Eur J Neurol 2005; 12 Suppl. 1: 50–3PubMedCrossRefGoogle Scholar
  7. 7.
    Byford S, Torgerson DJ, Raftery J. Economic note: cost of illness studies. BMJ 2000 May 13; 320 (7245): 1335PubMedCrossRefGoogle Scholar
  8. 8.
    Patton MQ.Qualitative research and evaluation methods. 3rd rev. Thousand Oaks (CA): Sage Publications, 2002Google Scholar
  9. 9.
    US Bureau of Labor Statistics. CPI inflation calculator. Washington, DC: US Bureau of Labor Statistics [online]. Available from URL: [Accessed 2010 Junf 7]Google Scholar
  10. 10. FX history: historical currency conversion rates. New York: OANDA Corporation [online]. Available from URL: [Accessed 2010 Jun 7]
  11. 11.
    Kane RL, Atherly A. Medicare expenditures associated with Alzheimer disease. Alzheimer Dis Assoc Disord 2000; 14: 187–95PubMedCrossRefGoogle Scholar
  12. 12.
    O’Brien JA, Caro JJ. Alzheimer’s disease and other dementia in nursing homes: levels of management and cost. Int Psychogeriatr 2001; 13: 347–58PubMedCrossRefGoogle Scholar
  13. 13.
    Rice D, Fox PJ, Max W, et al. The economic burden of Alzheimer’s disease care. Health Aff (Millwood) 1993; 12: 164–76CrossRefGoogle Scholar
  14. 14.
    Max W, Webber P, Fox P. Alzheimer disease: the unpaid burden of caring. J Aging Health 1995; 7: 179–99PubMedCrossRefGoogle Scholar
  15. 15.
    Stern Y, Folstein M, Albert M, et al. Multicenter study of predictors of disease course in Alzheimer disease (the ‘predictors study’): I. Study design, cohort description, and intersite comparisons. Alzheimer Dis Assoc Disord 1993; 7: 3–21PubMedCrossRefGoogle Scholar
  16. 16.
    Zhu CW, Scarmeas N, Torgan R, et al. Clinical features associated with costs in early AD: baseline data from the Predictors Study. Neurology 2006; 66: 1021–8PubMedCrossRefGoogle Scholar
  17. 17.
    Zhu CW, Scarmeas N, Torgan R, et al. Longitudinal study of effects of patient characteristics on direct costs in Alzheimer disease. Neurology 2006; 67: 998–1005PubMedCrossRefGoogle Scholar
  18. 18.
    Zhu CW, Scarmeas N, Torgan R, et al. Clinical characteristics and longitudinal changes of informal cost of Alzheimer’s disease in the community. J Am Geriatr Soc 2006; 54: 1596–602PubMedCrossRefGoogle Scholar
  19. 19.
    Zhu CW, Leibman C, McLaughlin T, et al. The effects of patient function and dependence on costs of care in Alzheimer’s disease. J Am Geriatr Soc 2008; 56: 1497–503PubMedCrossRefGoogle Scholar
  20. 20.
    Zhu CW, Leibman C, McLaughlin T, et al. Patient dependence and longitudinal changes in costs of care in Alzheimer’s disease. Dement Geriatr Cogn Disord 2008; 26: 416–23PubMedCrossRefGoogle Scholar
  21. 21.
    Stern Y, Albert SM, Sano M, et al. Assessing patient dependence in Alzheimer’s disease. J Gerontol 1994; 49: M216–22CrossRefGoogle Scholar
  22. 22.
    Blessed G, Tomlinson BE, Roth M. The association between quantitative measures of dementia and of senile change in the cerebral grey matter of elderly subjects. Br J Psychiatry 1968; 114: 797–811PubMedCrossRefGoogle Scholar
  23. 23.
    Zhu CW, Scarmeas N, Stavitsky K, et al. Comparison of costs of care between patients with Alzheimer’s disease and dementia with Lewy bodies. Alzheimers Dement 2008; 4: 280–4PubMedCrossRefGoogle Scholar
  24. 24.
    Hanson JC, Lippa CF. Lewy body dementia. Int Rev Neurobiol 2009; 84: 215–28PubMedCrossRefGoogle Scholar
  25. 25.
    No authors listed. Costs: measuring the economic burden of Alzheimer’s disease care. J Nurs Adm 1997; 27 (1): 4–8Google Scholar
  26. 26.
    Albert SM, Glied S, Andrews H, et al. Primary care expenditures before the onset of Alzheimer’s disease. Neurology 2002; 59: 573–8PubMedCrossRefGoogle Scholar
  27. 27.
    Bynum JP, Rabins PV, Weller W, et al. The relationship between a dementia diagnosis, chronic illness, medicare expenditures, and hospital use. J Am Geriatr Soc 2004; 52: 187–94PubMedCrossRefGoogle Scholar
  28. 28.
    Ernst RL, Hay JW. The US economic and social costs of Alzheimer’s disease revisited. Am J Public Health 1994; 84: 1261–4PubMedCrossRefGoogle Scholar
  29. 29.
    Ernst RL, Hay JW, Fenn C, et al. Cognitive function and the costs of Alzheimer disease: an exploratory study. Arch Neurol 1997; 54: 687–93PubMedCrossRefGoogle Scholar
  30. 30.
    Fillenbaum G, Heyman A, Peterson BL, et al. Use and cost of hospitalization of patients with AD by stage and living arrangement: CERAD XXI. Neurology 2001; 56: 201–6PubMedCrossRefGoogle Scholar
  31. 31.
    Fillit H, Hill JW, Futterman R. Health care utilization and costs of Alzheimer’s disease: the role of co-morbid conditions, disease stage, and pharmacotherapy. Fam Med 2002; 34: 528–35PubMedGoogle Scholar
  32. 32.
    Fillit H, Hill J. The costs of vascular dementia: a comparison with Alzheimer’s disease. J Neurol Sci 2002 Nov 15; 203–204: 35–9PubMedCrossRefGoogle Scholar
  33. 33.
    Fox PJ, Kohatsu N, Max W, et al. Estimating the costs of caring for people with Alzheimer disease in California: 2000–2040. J Public Health Policy 2001; 22: 88–97PubMedCrossRefGoogle Scholar
  34. 34.
    Frytak JR, Henk HJ, Zhao Y, et al. Health service utilization among Alzheimer’s disease patients: evidence from managed care. Alzheimers Dement 2008; 4: 361–7PubMedCrossRefGoogle Scholar
  35. 35.
    Gutterman EM, Markowitz JS, Lewis B, et al. Cost of Alzheimer’s disease and related dementia in managed-Medicare. J Am Geriatr Soc 1999; 47: 1065–71PubMedGoogle Scholar
  36. 36.
    Harrow BS, Mahoney DF, Mendelsohn AB, et al. Variation in cost of informal caregiving and formal-service use for people with Alzheimer’s disease. Am J Alzheimers Dis Other Demen 2004; 19: 299–308PubMedCrossRefGoogle Scholar
  37. 37.
    Hay JW, Ernst RL. The economic costs of Alzheimer’s disease. Am J Public Health 1987; 77: 1169–75PubMedCrossRefGoogle Scholar
  38. 38.
    Herrmann N, Lanctot KL, Sambrook R, et al. The contribution of neuropsychiatric symptoms to the cost of dementia care. Int J Geriatr Psychiatry 2006; 21: 972–6PubMedCrossRefGoogle Scholar
  39. 39.
    Hu TW, Huang LF, CartwrightWS. Evaluation of the costs of caring for the senile demented elderly: a pilot study. Gerontologist 1986; 26: 158–63Google Scholar
  40. 40.
    Huang LF, Cartwright WS, Hu TW. The economic cost of senile dementia in the United States, 1985. Public Health Rep 1988; 103: 3–7PubMedGoogle Scholar
  41. 41.
    Hux MJ, O’Brien BJ, Iskedjian M, et al. Relation between severity of Alzheimer’s disease and costs of caring. CMAJ 1998; 159: 457–65PubMedGoogle Scholar
  42. 42.
    Kuo TC, Zhao Y, Weir S, et al. Implications of comorbidity on costs for patients with Alzheimer disease. Med Care 2008; 46: 839–46PubMedCrossRefGoogle Scholar
  43. 43.
    Lamb CE, Ratner PH, Johnson CE, et al. Economic impact of workplace productivity losses due to allergic rhinitis compared with select medical conditions in the United States from an employer perspective. Curr Med Res Opin 2006; 22: 1203–10PubMedCrossRefGoogle Scholar
  44. 44.
    Langa KM, Chernew ME, Kabeto MU, et al. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. J Gen Intern Med 2001; 16: 770–8PubMedCrossRefGoogle Scholar
  45. 45.
    Leon J, Cheng CK, Neumann PJ. Alzheimer’s disease care: costs and potential savings. Health Aff (Millwood) 1998; 17: 206–16CrossRefGoogle Scholar
  46. 46.
    Leon J, Neumann PJ. The cost of Alzheimer’s disease in managed care: a cross-sectional study. Am J Manag Care 1999; 5: 867–77PubMedGoogle Scholar
  47. 47.
    Martin BC, Ricci JF, Kotzan JA, et al. The net cost of Alzheimer disease and related dementia: a population-based study of Georgia Medicaid recipients. Alzheimer Dis Assoc Disord 2000; 14: 151–9PubMedCrossRefGoogle Scholar
  48. 48.
    McCormick WC, Hardy J, Kukull WA, et al. Healthcare utilization and costs in managed care patients with Alzheimer’s disease during the last few years of life. J Am Geriatr Soc 2001; 49: 1156–60PubMedCrossRefGoogle Scholar
  49. 49.
    Menzin J, Lang K, Friedman M, et al. The economic cost of Alzheimer’s disease and related dementias to the California Medicaid program (‘Medi-Cal’) in 1995. Am J Geriatr Psychiatry 1999; 7: 300–8PubMedGoogle Scholar
  50. 50.
    Moore MJ, Zhu CW, Clipp EC. Informal costs of dementia care: estimates from the National Longitudinal Caregiver Study. J Gerontol B Psychol Sci Soc Sci 2001; 56: S219–28CrossRefGoogle Scholar
  51. 51.
    Ostbye T, Crosse E. Net economic costs of dementia in Canada. CMAJ 1994; 151: 1457–64PubMedGoogle Scholar
  52. 52.
    Sloan FA, Taylor Jr DH. Effect of Alzheimer disease on the cost of treating other diseases. Alzheimer Dis Assoc Disord 2002; 16: 137–43PubMedCrossRefGoogle Scholar
  53. 53.
    Small GW, McDonnell DD, Brooks RL, et al. The impact of symptom severity on the cost of Alzheimer’s disease. J Am Geriatr Soc 2002; 50: 321–7PubMedCrossRefGoogle Scholar
  54. 54.
    Stommel M, Collins CE, Given BA. The costs of family contributions to the care of persons with dementia. Gerontologist 1994; 34: 199–205PubMedCrossRefGoogle Scholar
  55. 55.
    Stuart B, Gruber-Baldini AL, Fahlman C, et al. Medicare cost differences between nursing home patients admitted with and without dementia. Gerontologist 2005; 45: 505–15PubMedCrossRefGoogle Scholar
  56. 56.
    Taylor Jr DH, Sloan FA. How much do persons with Alzheimer’s disease cost Medicare? J Am Geriatr Soc 2000; 48: 639–46PubMedGoogle Scholar
  57. 57.
    Taylor Jr DH, Schenkman M, Zhou J, et al. The relative effect of Alzheimer’s disease and related dementias, disability, and comorbidities on cost of care for elderly persons. J Gerontol B Psychol Sci Soc Sci 2001; 56: S285–93CrossRefGoogle Scholar
  58. 58.
    Welch HG, Walsh JS, Larson EB. The cost of institutional care in Alzheimer’s disease: nursing home and hospital use in a prospective cohort. J Am Geriatr Soc 1992; 40: 221–4PubMedGoogle Scholar
  59. 59.
    Zhao Y, Kuo TC, Weir S, et al. Healthcare costs and utilization for Medicare beneficiaries with Alzheimer’s. BMC Health Serv Res 2008 May 22; 8: 108PubMedCrossRefGoogle Scholar
  60. 60.
    Zimmerman S, Gruber-Baldini AL, Hebel JR, et al. Nursing home characteristics related to medicare costs for residents with and without dementia. Am J Alzheimers Dis Other Demen 2008; 23: 57–65PubMedCrossRefGoogle Scholar
  61. 61.
    Raina P, Santaguida P, Ismaila A, et al. Effectiveness of cholinesterase inhibitors and memantine for treating dementia: evidence review for a clinical practice guideline. Ann Int Med 2008; 148: 379–85PubMedGoogle Scholar
  62. 62.
    Wimo A. The art of cost of illness. J Alzheimers Dis 2010; 19: 617–9PubMedGoogle Scholar

Copyright information

© Springer International Publishing AG 2011

Authors and Affiliations

  1. 1.Department of Clinical Epidemiology and BiostatisticsMcMaster University DTCHamiltonCanada
  2. 2.McMaster Evidence-based Practice Centre, McMaster UniversityHamiltonCanada
  3. 3.Canadian Researchers at the End of Life Network (CARENET)KingstonCanada

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