Skip to main content

Costs of care for people with dementia just before and after nursing home placement: primary data from eight European countries

Abstract

Background

Dementia is the most common cause of functional decline among elderly people and is associated with high costs of national healthcare in European countries. With increasing functional and cognitive decline, it is likely that many people suffering from dementia will receive institutional care in their lifetime. To delay entry to institutional care, many European countries invest in home and community based care services.

Objectives

This study aimed to compare costs for people with dementia (PwD) at risk for institutionalization receiving professional home care (HC) with cost for PwD recently admitted to institutional long-term nursing care (ILTC) in eight European countries. Special emphasis was placed on differences in cost patterns across settings and countries, on the main predictors of costs and on a comprehensive assessment of costs from a societal perspective.

Methods

Interviews using structured questionnaires were conducted with 2,014 people with dementia and their primary informal caregivers living at home or in an ILTC facility. Costs of care were assessed with the resource utilization in dementia instrument. Dementia severity was measured with the standardized mini mental state examination. ADL dependence was assessed using the Katz index, neuropsychiatric symptoms using the neuropsychiatric inventory (NPI) and comorbidities using the Charlson. Descriptive analysis and multivariate regression models were used to estimate mean costs in both settings. A log link generalized linear model assuming gamma distributed costs was applied to identify the most important cost drivers of dementia care.

Results

In all countries costs for PwD in the HC setting were significantly lower in comparison to ILTC costs. On average ILTC costs amounted to 4,491 Euro per month and were 1.8 fold higher than HC costs (2,491 Euro). The relation of costs between settings ranged from 2.4 (Sweden) to 1.4 (UK). Costs in the ILTC setting were dominated by nursing home costs (on average 94 %). In the HC setting, informal care giving was the most important cost contributor (on average 52 %). In all countries costs in the HC setting increased strongly with disease severity. The most important predictor of cost was ADL independence in all countries, except Spain and France where NPI severity was the most important cost driver. A standard deviation increase in ADL independence translated on average into a cost decrease of about 22 %.

Conclusion

Transition into ILTC seems to increase total costs of dementia care from a societal perspective. The prevention of long-term care placement might be cost reducing for European health systems. However, this conclusion depends on the country, on the valuation method for informal caregiving and on the degree of impairment.

This is a preview of subscription content, access via your institution.

Fig. 1
Fig. 2

Notes

  1. Smith et al. [6] found that around 90 % of people with dementia become institutionalized before death.

  2. BADL includes tasks that are necessary for fundamental functioning such as eating, feeding, dressing, bathing, toilet, grooming. IALD consists of activities that allow individuals to live independently in a community, such as housework (including cooking), medication, shopping, managing money, transportation.

  3. Molloy et al. [23] showed that the SMMSE had a better reliability compared to the traditional MMSE.

  4. Meijer et al. [29] found for the Netherlands a caregiver’s mean willingness to pay (WTP) of 9.13 € for reducing informal care by 1 h.

  5. These studies provide a rationale for the upper bound of 20 €. Leicht et al. [11] valued hours of informal care using the hourly wage rate for professional home care in Germany. In 2009 it was 18.69 € and reflected “the average gross wage plus non-wage labor costs for employees in the domain of care and assistance for elderly or handicapped”. Schwarzkopf et al. [13] valued (again for Germany) hours of informal care for ADL at 28.30 € using hourly wage rates of professional nursing staff and for IADL at 16.64 € using hourly wage rates for professional housekeepers.

  6. In order to allow an interpretation of the mean costs in the analysis of pooled data as “average means across countries” probability weights which denote the inverse of the probability that the observation is included because of the sampling design were applied.

  7. Generally, costs in countries with less (more) severe cases of dementia in the sample were overestimated (underestimated) without adjustment for differences in disease severity.

  8. The impact of the alternative unit costs was similar across countries, because in each country accommodation costs dominated ILTC costs, leading to a parallel shift of costs.

  9. For the pooled data the pairwise correlation between total costs (unadjusted for international price differences) and disease severity measures were pwcorr = −0.203 for SMMSE, −0.341 for ADL independence and 0.1605 for NPI severity, respectively. The pairwise correlations between SMMSE and the other disease severity measures were pwcorr = 0.425 for ADL independence and −0.142 for NPI severity (p < 0.001 for all pairwise correlations; data not shown).

  10. The association between ADL independence and costs was even higher when no other disease severity variables were included. In that case a standard deviation increase in ADL independence was associated with a decrease in costs by 26 %.

  11. Gustavsson et al. [22] assessed informal caregiving costs in the ILTC setting for the UK, Spain and Sweden using an opportunity cost approach. They found a share of informal caregiving ranging from 3 % in Sweden, 5 % in the UK and 6 % in Spain for PwD with moderate or severe dementia.

  12. To assess whether this number might give orientation also for European countries we looked at ADL dependency of elderly Europeans provided by the Survey of Health, Ageing and Retirement, a representative study of elderly Europeans. On average, people without dementia aged between 80 and 85 had limitations in 0.6 activities of daily living. Using the regression coefficient of ADL independency found in this study, this would translate into lower costs due to dementia alone of about 7 % costs only when considering ADL independence.

References

  1. Alzheimer’s Disease International: World Alzheimer Report 2010: The global economic impact of dementia. http://www.alz.co.uk/research/files/WorldAlzheimerReport2010.pdf (2010). Assessed 07/07/2013

  2. Hurd, M.D., Martorell, P., Delavande, A., Mullen, K.J., Langa, K.M.: Monetary costs of dementia in the United States. N. Engl. J. Med. 368, 1326–1334 (2013)

    PubMed Central  CAS  Article  PubMed  Google Scholar 

  3. Jönsson, L., Eriksdotter Jönhagen, M., Kilander, L., Soininen, H., Hallikainen, M., Waldemar, G., Nygaad, H., Andreasen, N., Winblad, B., Wimo, A.: Determinants of costs of care for patients with Alzheimerʼs disease. Int. J. Ger. Psych. 21(5), 449–459 (2006)

    Article  Google Scholar 

  4. Quentin, W., Riedel-Heller, S.G., Luppa, M., Rudolph, A., König, H.H.: Cost-of-illness studies of dementia: a systematic review focusing on stage dependency of costs. Acta. Psychiatr. Scand. 121, 243–259 (2010)

    CAS  Article  PubMed  Google Scholar 

  5. Yaffe, K., Fox, P., Newcomer, R., Sands, L., Lindquist, K., Dane, K., Covinsky, K.: Patient and caregiver characteristics and nursing home placement in patients with dementia. JAMA 287(16), 2090–2097 (2002)

    Article  PubMed  Google Scholar 

  6. Smith, G.E., Kokmen, E., O´Brian, P.C.: Risk factors for nursing home placement in a population-based dementia cohort. J. Am. Geriatr. Soc. 48, 519–525 (2000)

    CAS  Article  PubMed  Google Scholar 

  7. Verbeek, H., Meyer, G., Leino-Kilpi, H., Zabalegui, A., Rahm Hallberg, I., Saks, K., Soto, M., Challis, D., Sauerland, D., Hamers, J.: European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a Right Time Place Care study. BMC Public Health 12, 68 (2012)

    PubMed Central  Article  PubMed  Google Scholar 

  8. Tucker, S., Hughes, J., Burns, A., Challis, D.: The balance of care: reconfiguring services for older people with mental health problems. Aging Ment. Health. 12, 81–91 (2008)

    CAS  Article  PubMed  Google Scholar 

  9. Feldman, H.H., Pirttila, T., Dartigues, J.F., Everitt, B., Van Baelen, B., Schwalen, S., Kavanagh, S.: Treatment with galantamine and time to nursing home placement in Alzheimer’s disease patients with and without cerebrovascular disease. Int. J. Geriatr. Psychiatry 24, 479–488 (2009)

    Article  PubMed  Google Scholar 

  10. Ribbe, M.W., Ljunggren, G., Steel, K., Topinkova, E., Hawes, C., Ikegami, N., Henrard, J.C., Jonnson, P.V.: Nursing homes in 10 nations: a comparison between countries and settings. Age Ageing 26(Suppl. 2), 3–12 (1997)

    Article  PubMed  Google Scholar 

  11. Leicht, H., König, H.H., Stuhldreher, N., Bachmann, C., Bickel, H., et al.: Predictors of costs in dementia in a longitudinal perspective. PLoS ONE 8(7), e70018 (2013). doi:10.1371/journal.pone.0070018.Print

    PubMed Central  CAS  Article  PubMed  Google Scholar 

  12. Leicht, H., Heinrich, S., Heider, D., Bachmann, C., Bickel, H., et al.: Net costs of dementia by disease stage. Acta. Psychiatr. Scand. 124, 384–395 (2011)

    CAS  Article  PubMed  Google Scholar 

  13. Schwarzkopf, L., Menn, P., Kunz, S., Holle, R., Lauterberg, J., et al.: Costs of care for dementia patients in community setting: an analysis for mild and moderate disease stage. Value Health 14, 827–835 (2011)

    Article  PubMed  Google Scholar 

  14. van den Berg, B., Brouwer, W.B.F., Koopmanschap, M.A.: Economic valuation of informal care. An overview of methods and applications. Eur. J. Health Econ. 5, 36–45 (2004)

    Article  PubMed  Google Scholar 

  15. Brouwer, W., van Exel, N.J., Koopmanschap, M., Rutten, F.: The valuation of informal care in economic appraisal. Int. J. Technol. Assess. Health Care 15, 147–160 (1999)

    CAS  Article  PubMed  Google Scholar 

  16. Wimo, A., Wetterholm, A.L., Mastey, V., Winblad, B.: Evaluation of the healthcare resource and caregiver time in anti-dementia drug trials: a quantitative battery. In: Wimo, A., Jönsson, B., Karlsson, G., Winblad, B. (eds.) Health economics of dementia. Wiley, Chichester (1998)

    Google Scholar 

  17. Wimo, A., Nordberg, G.: Validity of assessments of time. Comparisons of direct observations and estimates of time by the use of the (Resource Utilisation in Dementia) RUD-instrument. Arch. Gerontol. Geriatr. 44(1), 71–81 (2007)

    Article  PubMed  Google Scholar 

  18. Wimo, A., Jonsson, L., Zbrozek, A.: The resource utilization in dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J. Nutr. Health Aging 14(8), 685–690 (2010)

    CAS  Article  PubMed  Google Scholar 

  19. Rapp, T., Andrieu, S., Molinier, L., Grand, A., Cantet, C., et al.: Exploring the relationship between Alzheimer’s disease severity and longitudinal costs. Value Health 15, 412–419 (2012)

    Article  PubMed  Google Scholar 

  20. Mesterton, J., Wimo, A., Langworth, S., Winblad, B., Jönsson, L.: Cross-sectional observational study on the societal costs of Alzheimer’s disease. Curr. Alzheimer Res. 7(4), 358–367 (2010)

    CAS  Article  PubMed  Google Scholar 

  21. Gustavsson, A., Johansson, L., Rapp, T., Reynish, E., Ousset, P.J., Andrieu, S., Cantet, C., Winblad, B., Vellas, B., Wimo, A.: Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study. J. Nutr. Health Aging 14(8), 648–654 (2010)

    CAS  Article  PubMed  Google Scholar 

  22. Gustavsson, A., Brinck, P., Bergvall, N., Kolasa, K., Wimo, A., Winblad, B., Jonsson, L.: Predictors of costs of care in Alzheimer’s disease: a multinational sample of 1222 patients. Alzheimers Dement. 7(3), 318–327 (2011)

    Article  PubMed  Google Scholar 

  23. Molloy, D.W., Alemayehu, E., Roberts, R.: Reliability of a standardized mini-mental-state-examination compared with the traditional mini-mental-state examination. Am. J. Psychiatry 148(1), 102–105 (1991)

    CAS  Article  PubMed  Google Scholar 

  24. Katz, S.: Assessing self-maintenance: activities of daily living, mobility, and instrumental activities of daily living. J. Am. Geriatr. Soc. 31(12), 721–727 (1983)

    CAS  Article  PubMed  Google Scholar 

  25. Charlson, M.E., Pompei, P., Ales, K.L., MacKenzie, C.R.: A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis. 40(5), 373–383 (1987)

    CAS  Article  PubMed  Google Scholar 

  26. Cummings, J.L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D.A., Gornbein, J.: The neuropsychiatric inventory. Neurology 44(12), 2308 (1994)

    CAS  Article  PubMed  Google Scholar 

  27. Zarit, S.H., Reever, K.E., Bach-Peterson, J.: Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 20(6), 649–655 (1980)

    CAS  Article  PubMed  Google Scholar 

  28. Eurostat database. http://epp.eurostat.ec.europa.eu/portal/page/portal/statistics/search_database (2013). Assessed 11/04/2012

  29. de Meijer, C., Brouwer, W., Koopmanschap, M., van den Berg, B., van Exel, J.: The value of informal care–a further investigation of the feasibility of contingent valuation in informal caregivers. Health Econ. 19(7), 755–771 (2010)

    Article  PubMed  Google Scholar 

  30. Hakkaart- van Roijen, L., Tan, S.S, Bouwmans, C.A.M.: Handleiding voor kostenonderzoek. Methoden en standaard kostprijzen voor economische evaluaties in de 63 gezondheidszorg. http://www.cvz.nl/binaries/live/cvzinternet/hst_content/nl/documenten/lossepublicaties/handleiding-kostenonderzoek-2010.pdf (2010). Assessed 20/07/2013

  31. Curtis, L.: Unit costs of health and social care 2010. (2010), in: http://www.pssru.ac.uk/archive/pdf/uc/uc2010/uc2010.pdf. Assessed 20/07/2013

  32. Luttenberger, K., Graessel, E.: Recording care time in nursing homes: development and validation of the “RUD-FOCA” (resource utilization in dementia-formal care). Int. Psychogeriatr. 22, 1291–1300 (2010)

    Article  PubMed  Google Scholar 

  33. Fries, B.E., Schneider, D.P., Foley, W.J., Gavazzi, M., Burke, R., Cornelius, E.: Refining a case-mix measure for nursing homes. Resource utilisation groups (RUG-III). Med. Care 32, 668–685 (1994)

    CAS  Article  PubMed  Google Scholar 

  34. Carpenter, G.I., Perry, M., Challis, D., Hope, K.: Identification of registered nursing care of residents in English nursing homes using the minimum data set resident assessment instrument (MDS/RAI) and resource utilisation groups version III (RUG-III). Age Ageing 32, 279–285 (2003)

    Article  PubMed  Google Scholar 

  35. Gustavsson, A., Jönsson, L., Parmler, J., Andreasen, N., Wattmo, C., Wallin, Å.K., Minthon, L.: Disease progression and costs of care in Alzheimerʼs disease patients treated with donepezil: a longitudinal naturalistic cohort. Eur. J. Health Econ. 13(5), 561–568 (2012)

    Article  PubMed  Google Scholar 

  36. Zhu, C.W., Scarmeas, N., Torgan, R., Albert, M., Brandt, J., Blacker, D., Sano, M., Stern, Y.: Clinical characteristics and longitudinal changes of informal cost of Alzheimer’s disease in the community. J. Am. Geriatr. Soc. 54, 1596–1602 (2006)

    PubMed Central  Article  PubMed  Google Scholar 

  37. Murman, D.L., Von Eye, A., Sherwood, P.R., Liang, J., Colenda, C.C.: Evaluated need, costs of care, and payer perspective in degenerative dementia patients cared for in the United States. Alzheimer Dis. Assoc. Disord. 21, 39–48 (2007)

    Article  PubMed  Google Scholar 

  38. Verbeek, H., Challis, D., Karlsson, S., Leino-Kilpi, H., Meyer, G., Saks, K., Soto, M., Zabalegui, A., Hamers, J.P.: Factors influencing the institutionalization of people with dementia: a survey in 8 European countries, unpublished manuscript (submitted) (2014)

  39. International labour offices (ILO) database. http://laborsta.ilo.org/ (2013). Assessed 07/09/2012

  40. OECD: OECD Health Policy Studies. Pharmaceutical pricing policies in a global market.http://www.oecd.org/fr/els/systemes-sante/pharmaceuticalpricingpoliciesinaglobalmarket.htm (2008). Assessed 07/09/2013

  41. Ellviva: http://www.ellviva.de/Gesundheit/Medikamente (2013). Assessed 07/09/2012

  42. Tan, S., Oostenbrink, J., Rutten, F.: Costs and prices of healthcare services in the Netherlands: a micro costing approach based on case-vignettes.http://www.ehma.org/files/HB%20WP9%20Report%20Netherlands.pdf (2006). Assessed 11/11/2011

Download references

Acknowledgments

The Right Time Place Care study is supported by a grant from the European Commission within the 7th framework program (project 242,153).

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Ansgar Wübker.

Appendix

Appendix

The RightTimePlaceCare Consortium partners are as follows:

Coordinator:

University of Witten/Herdecke (DE): Gabriele Meyer PhD, RN, professor (scientific coordinator, WP 1 leader); Astrid Stephan MScN, RN; Anna Renom Guiteras, geriatrician; Dirk Sauerland Dr.rer.pol., professor (WP 4 & 6 leader); Ansgar Wübker Dr. rer. pol.; Patrick Bremer.

Consortium members:

Maastricht University (NL): Jan P.H. Hamers PhD, RN, professor (WP 3 leader); Basema Afram MSc; Hanneke C. Beerens MSc, RN; Michel H.C. Bleijlevens, PhD, PT; Hilde Verbeek, PhD; Sandra M.G. Zwakhalen, PhD, RN; Dirk Ruwaard, MD, professor.

Lund University (SE): Ingalill Rahm Hallberg, professor (WP 2 leader); Ulla Melin Emilsson, professor; Staffan Karlsson, PhD.

University of Manchester (UK): David Challis, professor; Caroline Sutcliffe; Dr David Jolley; Sue Tucker; Ian Bowns; Brenda Roe, professor; Alistair Burns, professor.

University of Turku (FI): Helena Leino-Kilpi, PhD, RN, professor; Jaana Koskenniemi, MNSc, RN, researcher; Riitta Suhonen, PhD, RN, professor; Matti Viitanen, MD, PhD, professor; Seija Arve, PhD, RN, adj professor; Minna Stolt, MNSc, PhD; Maija Hupli, PhD, RN.

University of Tartu (EE): Kai Saks, MD, PhD, professor (WP 5 leader); Ene-Margit Tiit, PhD, professor; Jelena Leibur, MD, MBA; Katrin Raamat, MA; Angelika Armolik, MA; Teija Tuula Marjatta Toivari, RN.

Fundació Privada Clinic per la Recerca Biomedica, Hospital Clinic of Barcelona (ES): Adelaida Zabalegui PhD, RN (WP 5 leader); Montserrat Navarro PhD, RN; Esther Cabrera PhD, RN (Tecnocampus Mataró); Ester Risco MNSc, RN.; Marta Farre, RN, MNS.

Gerontôpole, University of Toulouse (FR): Dr Maria Soto; Agathe Milhet; Dr Sandrine Sourdet; Sophie Gillette; Bruno Vellas, professor.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Wübker, A., Zwakhalen, S.M.G., Challis, D. et al. Costs of care for people with dementia just before and after nursing home placement: primary data from eight European countries. Eur J Health Econ 16, 689–707 (2015). https://doi.org/10.1007/s10198-014-0620-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10198-014-0620-6

Keywords

  • Dementia
  • Costs of care
  • Professional home care versus institutional long-term care
  • Informal caregiving
  • International data

JEL Classification

  • C
  • D
  • I10
  • I11
  • I18