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

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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.

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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.

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Acknowledgments

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

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Authors and Affiliations

  1. University of Witten/Herdecke, Alfred-Herrhausen-Straße, 45128, Essen, Germany

    Ansgar Wübker

  2. Rheinisch-Westfälisches Institut für Wirtschaftsforschung, Health Devision, Hohenzollernstraße 1-3, 45128, Essen, Germany

    Ansgar Wübker

  3. Maastricht University, P.O. Box 616, 6200, MD, Maastricht, Netherlands

    Sandra M. G. Zwakhalen

  4. The University of Manchester, Dover Street Building, Oxford Road, Manchester, M13 9PL, UK

    David Challis

  5. University of Turku, Department of Nursing Science, 20014, Turku, Finland

    Riitta Suhonen

  6. Lund University, The Swedish Institute of Health Sciences, P.O. Box 187, SE 22100, Lund, Sweden

    Staffan Karlsson

  7. School of Health Sciences, Hospital Clínic de Barcelona, Avinguda Ernest Lluch, 32 (Porta Laietana), 08302, Mataró (Barcelona), Spain

    Adelaida Zabalegui

  8. Gérontopôle de Toulouse, Department of Geriatric Medicine, University Hospital de Toulouse, 31059, Toulouse, France

    Maria Soto

  9. University of Tartu, Department of Internal Medicine, Puusepa 6-261, 51014, Tartu, Estonia

    Kai Saks

  10. University of Witten/Herdecke, Department of Institutional Economics and Health Systems Management, Alfred-Herrhausen-Straße 50, 58448, Witten, Germany

    Dirk Sauerland

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  1. Ansgar Wübker
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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.

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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

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