Economical Aspects of Dementia

Handbook of Clinical Neurology, Vol. 89 (3rd series) Dementias C. Duyckaerts, I. Litvan, Editors # 2008 Elsevier B.V. All rights reserved

Chapter 13

Economical aspects of dementia ANDERS WIMO * AND BENGT WINBLAD KI Alzheimer’s Disease Research Center, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden

13.1. Introduction Health economy is in its widest context the application of political economy in the area of health care. In traditional economy, the focus is to analyze the relationship between the two basic players on the market, the producer and the consumer. In health economy, there is most often a third player involved, the payer, which may be the state, a county council, a municipality, an insurance company, or a health maintenance organization (HMO). Since dementia disorders also involve different parts of the social sector, it is obvious that the health economics of dementia includes an analysis of both the health and social sectors. The OECD (Organization for Economic Co-operation and Development) regards dementia as a major health and social policy issue in its member states (Moise et al., 2004). The World Health Organization (WHO) emphasize dementia as one of the major reasons for disability in the world. In 2000, there were approximately 25 million people in the world suffering from dementia (Wimo et al., 2003a). Projections based on demographic prognoses (UN, 1998) and age-specific dementia prevalence (Fratiglioni et al., 2001) indicate that the number of demented worldwide will increase to over 30 million in 2010 and to about 65 million in 2030 (Wimo et al., 2003a). Today, the majority of demented patients live in developing countries and this trend will be even more pronounced in the future as a consequence of the “graying” of these countries. It is obvious that such dramatic figures and changes will have an enormous economic impact.

13.2. Economic burden of dementia At the Alzheimer conference in Washington DC in 2005, Professor Bengt Winblad presented an estimate

of the worldwide direct cost of dementia (Winblad et al., 2005), about US$156 billion in 2003. In this calculation, the cost of informal care was not included. Although such an estimate includes several methodological problems, the magnitude of the cost of dementia care is enormous and its impact on the social and health care system in any country is obvious. Descriptive economic studies (often referred to as cost of illness studies, COI) from different parts and countries of the world are difficult to compare with each other. Different ways of organizing and financing care, uneven economic strength of countries, varying care culture, and different meanings of care concepts (are “nursing homes” similar in different parts of the world?) are factors making comparisons problematic. Particularly the role of unpaid informal care is critical when the total costs of dementia are considered. Any health economic study must clarify its perspective. The viewpoint may be a county council, a municipality, the public sector in general, an insurance company, a family member or a patient. A societal perspective, which is preferred by most economists, should include all relevant costs that are involved in care. In dementia care this means that the care given by unpaid informal carers, mostly spouses and/or children, should be given a monetary value. There is some rationale for including costs of informal care: for example if the number of beds in nursing homes is reduced, the burden of care may be put on family members. It is also of interest to present the costs for different payers in a COI study. Political decisions of how scarce resources are allocated (or results of treatment) may have different effects on different payers in a care organization. The example above—a reduction in nursing home beds—may, in addition to increasing the burden on family members, also increase the utilization of hospital care (which in many countries does not

*Correspondence to: Anders Wimo MD, PhD, HC Harma˚nger, Backv 5, S 820 70 Harma˚nger, Sweden. E-mail: Anders. [email protected].

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have the same payer as nursing home care). The detection of less than optimal incentives is an essential part of the economic analysis. Limiting the economic analysis to the health care sector or the social services sector excludes substantial components from the analysis. 13.2.1. Costing The costing process consists of two steps: (1) a quantification of resources used or lost (in terms of hours of home care, days in nursing home, etc.); (2) a multiplication of this amount of resource use by a price vector. We have developed a comprehensive instrument, the Resource Utilization in Dementia (RUD), to assess the first step, which is available in a complete (Wimo et al., 1998a) and a short (Wimo and Winblad, 2003) version. The short version covers more than 90% of the resources measured in the complete version. The content of RUD can be seen in Table 13.1. The difference between the complete RUD and RUD Lite is that the resources used by caregivers are excluded in RUD Lite. Experience from trials shows that this part is very small from a societal perspective. However, if the caregiver situation in a broad context is of interest in a study, the complete RUD should be used. The cost of interest in economic evaluations is the opportunity cost, i.e., the benefits that are forgone because a resource is not put to its best alternative use (Drummond et al., 1997). Resources are always scarce and the use of a resource in one way will result in some lost benefit because resources were not allocated to another option (Donaldson et al., 2002). Opportunity costs should in the ideal case be based on market prices, which in health care are not always easy to identify. Table 13.1 Components of resource utilization in dementia (RUD) (Wimo et al., 1998) Patient

Caregiver

Accomodation/long-term care*

Informal care time (for patient)* Work status (Respite care) Hospital care Outpatient clinic visits Social service Nursing home care Day care Drug use

(Work status)** Respite care* Hospital care* Outpatient clinic visits Social service* Nursing home care* Day care* Drug use**

*In RUD Lite. **Depending of age of study population. ***Only study drug in RUD Lite.

13.2.2. Informal care Costing unpaid informal care is a complicated issue (McDaid, 2001). Both the quantification of informal care time and its costing include several moments where the chosen approach and instrument can lead to different results. RUD includes a comprehensive set of questions to quantify the amount of informal care, based on three basic components: personal activities of daily living (ADL), instrumental ADL and supervision/surveillance. One critical question is whether the time for supervision and surveillance should be included. Even if this component may be regarded as vague, it is nevertheless an important part of the day for many caregivers and our studies show that about half of the caregiver time can be regarded as supervision time (Wimo et al., 2000, 2002; Nordberg et al., 2005). It is very important to clarify which kind of informal care is included when scales are used (Clipp and Moore, 1995; Davis et al., 1997). The next component, the costing of informal care, can be done in different ways, with a variation in the resulting costs (Karlsson et al., 1998; van den Berg et al., 2004). Opportunity costs are from a theoretical point of view preferable, but there are difficulties in estimating opportunity costs for leisure time and work done by retired people. The replacement cost approach, where it is assumed that all informal care could be replaced by professional staff at a 1:1 ratio, probably overestimates the cost of informal care. Based on the methodological considerations above, the great variation in the cost of dementia care presented by different countries is not surprising (Table 13.2). In both a US study (Ernst and Hay, 1994) and a Canadian study (Ostbye and Crosse, 1994), direct medical and non-medical costs and costs of informal care were included; the variation is nevertheless high between these countries. In the Swedish COI studies (Wimo et al., 1997; Wimo and Jonsson, 2001), there was also an estimate of gross and net costs of dementia, and the lower figure includes an estimate including patients with questionable dementia. The lower cost also only includes cost of “paid informal care” (remuneration to caregivers only for a very small proportion of the total care time at a low hourly cost). An Italian study (Cavallo and Fattore, 1997) clearly illustrates how a great amount of informal care, given a cost according to the replacement method, will increase the estimate of the societal costs. The direct costs in the Italian and Danish studies (Kronborg Andersen et al., 1999) are on the same level. In the UK study by Lowin et al. (2001), informal care was included in all scenarios, but, depending on assumptions about prevalence, hours of informal care per week and the hourly cost

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Table 13.2 Cost of illness studies of dementia Country

Cost per patient per year, 2003 (US$)

Cost categories

Reference

USA Canada Sweden Sweden Italy Italy Denmark UK

57,000 14,300 16,600 31,800 10,000 64,000 10,400 19,900–39,600

D, D, D, D, D D, D D,

Ernst and Hay, 1994 Ostbye and Crosse, 1994 Wimo et al., 1997 Wimo et al., 2001 Cavallo and Fattore, 1997 Cavallo and Fattore, 1997 Kronborg Andersen et al., 1999 Lowin et al., 2001

IC IC IC IC, gross costs IC IC

of informal care, the analysis resulted in a variation in costs. Even if it is logical to assume that there are indeed true differences between countries in the economic burden of dementia, it is obvious that the different methodological approaches influence the presented costs. Thus, transparency is essential when COI studies from different countries are compared.

estimated that a change in the MMSE score by one point corresponds to a change in annual cost of about US$1600–2200. However, it must be emphasized that descriptive information of costs and severity cannot be transformed directly to cost-savings; it gives a hint of the magnitude of potential savings, but it is necessary to show results in controlled trials.

13.2.3. Severity of cognitive decline and costs of dementia

13.3. Normative studies

From population-based cross-sectional studies of the elderly, it is possible to estimate the costs of care in different stages of cognitive decline. From the Swedish Kungsholmen project (Fratiglioni et al., 1992) and its rural portion, the Nordanstig project (Klarin et al., 2003; Nordberg et al., 2005), we have data on resource utilization and living which can be used for cost calculations from a societal viewpoint. We have tested different costing approaches, particularly regarding the costs of informal care and the costs of different kinds of institutional setting. There is, as seen in Table 13.3 (figures are rounded off) a strong correlation between dementia severity and annual costs. With single regression approaches, it can be Table 13.3 Severity of cognitive decline in terms of CDR and yearly costs (2003, US$) CDR stage

Annual cost*

0 0.5 1 2 3

5,000 7,000 13,500 31,000 47,000

*Estimates are rounded off.

Cost of illness studies cannot, as mentioned above, be used in setting priorities. For this purpose normative studies (e.g., cost-effectiveness studies) are needed. A complete health economic evaluation analyses the value for money and should include an analysis of both costs and consequences (outcomes) and there should be a comparison between at least two alternatives, as expressed in the incremental cost-effectiveness ratio (ICER): DC=DE ¼ ðCA  CBÞ=ðEAðT1  T0 Þ  EBðT1  T0 ÞÞ where C ¼ costs, E ¼ effects (consequences), A, B ¼ treatments, T0, T1 ¼ measurements. The basic principles for decisions can be seen in Fig. 13.1 There are four basic types of economic evaluation. In a cost minimization analysis (CMA), it is assumed or shown that the outcome is the same in the different treatment options and the focus is then to identify the alternative with the lowest cost. In a costbenefit analysis (CBA), both costs and consequences Cost Consequence A better than B A=B

A worse than B

A cheaper than B

A dominates

A dominates

ICER

A=B

A dominates

Neutral

B dominates

A more expensive than B

ICER

B dominates

B dominates

Fig. 13.1. Decision support in economic evaluation. ICER, incremental cost-effectiveness ratio.

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are in monetary terms, while the outcome measure in cost-effectiveness analysis (CEA) is non-monetary and quantifiable (such as extra years in a less severe state of dementia). A special case is the cost-utility analysis (CUA), where the outcome is expressed in terms of utilities, mostly QALYs (quality adjusted life years) (Torrance, 1996). 13.3.1. Consequences Any intervention has consequences, which should be included in the denominator in the ICER (see above). The question is which kind of outcome measure should be used. Traditional measures such as extra years of survival are not the first choice in dementia. Potential outcome measures are seen in Table 13.4. Depending on the viewpoint of a study, the focus may be on patients, caregivers (in terms of next of kin) or both. Many of these are of course the same as the primary and secondary efficacy outcomes in trials. In a CEA it is essential to select the most relevant clinical outcome and to interpret the ICER in a meaningful way. Institutionalization and caregiver time may be regarded as relevant outcomes, but, since they are also heavy parts of the numerator in the ICER, it is doubtful to use them as outcomes in a CEA. The most relevant outcomes regarding patients are in our opinion quality of life and effects on severity/progression of disease and, for caregivers, quality of life aspects. 13.3.2. Quality of life Health-related quality of life (QoL), which is the approach that is mostly used in evaluations of health

care, consists of several dimensions (e.g., ADL, social interaction, perception, pain, anxiety, economic status). Two kinds of instrument can be used: they may be either diagnosis-specific or generic (Walker et al., 1998); and there are a great number of scales (for detailed information see primary sources and reviews: Bowling, 1995; Spilker, 1996; Salek et al., 1998; Walker et al., 1998). A specific problem in dementia is that the subjective feeling, which is an important dimension of quality of life, may be difficult to measure. Thus, proxies (mostly caregivers) are often used (Stewart and Brod, 1996). Indirect measurement per se with proxies is, however, not necessarily a problem—the US Panel for costeffectiveness actually recommends that the general public should value health states (Siegel et al., 1997). However, if the proxy is a family member, the answers may partly reflect the situation and interests of the proxy. Examples of dementia-specific instruments are DQoL (the Dementia Quality of Life instrument) (Brod et al., 1999), QOLAD (Quality Of Life–Alzheimer’s Disease) (Selai et al., 2001; Logsdon et al., 2002) and QOLAS (Quality of Life Assessment Schedule; an instrument that has been used in dementia and other neuropsychiatric conditions) (Jonsson et al., 2000; Selai et al., 2000; Elstner et al., 2001). However, since these instruments are not preference-based (Torrance et al., 1996; Siegel et al., 1997), they are less appropriate for CUA. Generic QoL scales provide opportunities to make comparisons with other diseases. There are also two types of generic QoL scale. Examples of indexes or profiles are the Sickness Impact Profile (Bergner et al., 1981),

Table 13.4 Potential outcomes in cost-effectiveness analysis of dementia Dimension

Examples of instruments/types of measures

Target group

Cognition Severity ADL

ADAS-cog (Rosen et al., 1984), MMSE (Folstein et al., 1975) CDR (Hughes et al., 1982), GDS (Reisberg et al., 1988) Katz (Katz et al., 1963), DAD (Gauthier et al., 1997) , PSMS (1998), Lawton–Brody (1969) See text CGI (Guy, 1979), CIBIC (Schneider et al., 1997) NPI (Cummings et al.,1994), Behave-AD (Reisberg et al., 1996), CMAI (Cohen-Mansfield et al., 1989) GBS (Brane et al., 2001)

Patients Patients Patients

Quality of life/QALYs Global impression Behavior Multidimensional scales Institutionalization Mortality Caregiver time Burden *In terms of next of kin.

RUD (Wimo et al., 1998, 2003), CATS (Clipp and Moore, 1995), CAS (Davis et al., 1997) Zarit burden scale (Zarit et al., 1980)

Patients, caregivers* Patients Patients Patients Patients Patients, caregivers* Caregivers* Caregivers*

ECONOMICAL ASPECTS OF DEMENTIA the Short Form 36 (SF-36) (Ware and Sherbourne, 1992) and shorter versions SF 20 and SF 12. Regarding caregivers, burden scales such as the Burden Interview (Zarit et al., 1980) can, in some sense, be used as indicators of QoL, but the interplay between patient characteristics, caregiver QoL, and burden is complex (Deeken et al., 2003). The other type of generic scale can be used to calculate quality adjusted life years (QALYs) (Torrance, 1997). Such instruments are, for example, The Health Utilities Index (HUI) (Torrance et al., 1996; Neumann et al., 2000), the EuroQoL/EQ-5D (Coucill et al., 2001) and the Index of well being/quality of well being scale (QWBS) (Kerner et al., 1998). The caregiver quality of life index (CQLI) (Mohide et al., 1988) is a QoL instrument focusing on caregivers, also making it possible to calculate QALYs. The QALY concept reflects both quantity of life and quality of life (Torrance et al., 1996) and is expressed as a number between 0 (death) and 1 (perfect health) and is widely used in CUA. The use of QALYs is under debate, particularly regarding the elderly (Tsuchiya et al., 2003). Chronic, incurable, progressive disorders may be disfavored when compared with curative surgical treatment, such as cataract or hip-replacement surgery. 13.3.3. Economic models Since dementia disorders are by nature progressive and incurable and often last for several years, often decades before death, it is not easy to capture the long-term health economic effects of interventions in conventional trials, lasting for, say, 3–12 months. Randomized controlled trials (RCTs) with a length of several years face great methodological problems, which the AD2000 trial has indeed illustrated (Courtney et al., 2004). Long-term open follow-up studies, such as with tacrine (Knopman et al., 1996) and donepezil (Geldmacher et al., 2003), show great problems with controls. Therefore, economic simulation models are frequently used. The basic idea with a model is that results from an empirical core are extrapolated to a longer period, often in a number of “cycles” with a length of 6–12 months. Different methods are used for the extrapolation, such as Markov models (Sonnenberg and Leventhal, 1998; Jonsson et al., 1999a) or models based on survival analysis (Fenn and Gray, 1999). The use of models in health economic analysis is controversial even if economists support their use when other results are lacking or are difficult to get (Buxton et al., 1997). The arguments against models are based on the fact that the results are not empirical (except for the empirical short-term core). However, models do not claim to predict the future, but they can be used

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to present different scenarios under specified assumptions, and in that sense they can be useful. 13.3.4. A mini-review It is useful to divide treatments of dementia broadly into two approaches: pharmacological treatment and various “programs”. “Programs” include a heterogeneous group of overlapping interventions, such as day care, caregiver support/counselling, and long-term care (LTC)/housing programs (the commonly used concept “non-pharmacological treatment” is in our opinion misleading since the basic daily care of the demented is, to a great extent, based on “programs”). A major conclusion in the dementia project run by the Swedish Council on Technology Assessment in Health Care (SBU) (Wimo, 2004: the authors of this chapter are engaged in the project) was that the number of complete health economic evaluations is limited and that it is currently very difficult to draw conclusions from an evidence-based perspective. Often, only costs are analyzed and sometimes piggy-backed onto efficacy studies (Winblad et al., 1997). Such studies can at best be regarded as cost consequence analyses. The number of RCTs with prospectively collected data on resource utilization and cost (“empirical studies”) is low. At the time of writing (September 1, 2005) only four such studies can be identified (Table 13.5). All these studies face methodological drawbacks in terms of design, low statistical power and high attrition. Three of the studies showed nonsignificant results. In the memantine study, where there was a statistically significant difference favoring treatment, about 2/3 of the cost savings were due to a reduction in unpaid informal care. In contrast, there are several pharmacoeconomic models published (Table 13.6), most of them on donepezil (Markov models) and galantamine (the AHEAD-concept, a type of Markov modeling). The outcomes (numerator in the ICER) are mainly two: effects on severity (progression) and QALYs. In general, models tend to favor treatment. This is not surprising, since models in some way are built on positive efficacy results, which in turn are built on a connection between an efficacy measurement and costs. The only major factors that in such a case can neutralize the positive effect are the drug costs and effects on survival (a prolonged survival with treatment). Even if there is alot written about “programs”, the health economic database is very limited. The few studies (Table 13.7) are based on small samples and short intervention periods. Regarding models of programs, we have found only three studies, one on group living (Wimo et al., 1995) and two on caregiver support/case management (Nocera et al., 2002; Martikainen et al., 2004), making any conclusions problematic.

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Table 13.5 RCTs with prospectively collected cost data

Drug

Severity of dementia

Study period (yrs)

Cost per treated patient

Cost per patient, comparator Cost diff.

P

Range in sensitivity analysis

Donepezil

Mild-moderate

1

27,139

28,331

1,192/year

NS

547–1276

Memantine

Moderate-severe

0.5

7,844

9,048

1,204/month

0.01

Donepezil

Mild-moderate

60 weeks

4,884

4,028

856

NS

Donepezil

Moderate-severe

0.5

9,138

9,444

306

NS

Yes, but figures not presented Yes, but cost figures not presented 71–480 (on website)

Reference Wimo et al., 2003b Wimo et al., 2003c Courtney et al., 2004 Feldman et al., 2004

Costs are expressed as US$ (2003) (PPPs).

Table 13.6 Pharmacoeconomical models

Drug

Severity of dementia

Model length (Yrs)

Model type

Out-come

Donepezil

Mild-moderate

5

Markov

Severity

Donepezil

Mild-moderate

5

Markov

Severity

Donepezil

Mild-moderate

5

Markov

Severity

Donepezil

Mild-moderate

Markov

QALYs

Donepezil

Mild-moderate

0.5 1 1.5 2 0.5 2

Markov

QALYs

Rivastigmine

Mild-moderate

0.5 1 2

Survival

QALYs

Galantamine

Mild-moderate

10

AHEAD*** QALYs

Galantamine Galantamine

Mild-moderate Mild-moderate

10.5 10.5

AHEAD AHEAD

QALYs NNT****

<0 <0 183,400 36,680 10,660 <0 43,622 <0 0.0337** QALYs 0.0346 ** QALYs <0 <0 <0 <0 <0

Galantamine

Mild-moderate

10

AHEAD

NNT****

<0

<0 to 14,296

Galantamine

Mild-moderate

10

AHEAD

QALYs

13,920

9,303–27,910

C/E or similar* 10,052 6,289 <0

Range in sensitivity analysis 1,661–17,445 <0 to 8,254 (all scenarios) <0 to 3261 (all scenarios) <0 to 481,424 (all scenarios)

Reference Stewart et al., 1998 O’sBrien et al., 1999 Jonsson et al., 1999b Neumann et al., 1999

<0 to 43,622 (all scenarios)

Ikeda et al., 2002

NA

Hauber et al., 2000

<0 to 40,427

Getsios et al., 2001 Caro et al., 2002 Garfield et al., 2002 Migliaccio-Walle et al., 2003 Ward et al., 2003

3110 to 5099 NA

(Continued)

ECONOMICAL ASPECTS OF DEMENTIA

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Table 13.6 (Continued)

Drug

Severity of dementia

Model length (Yrs)

Memantine

Moderate-severe

2

Markov model

Memantine

Moderate-severe

5

Markov model

Model type

Out-come

C/E or similar*

<0 QALYs, dependency, years in community dependency, <0 years in community

Range in sensitivity analysis

Reference

<0 to 231,372/ QALY

Jones et al., 2004

<0 (þ Monte Carlo simulation: <0 in 94%)

Franc¸ois et al., 2004

Costs are expressed as US$ (2003) (PPPs). *A positive value indicates a cost per gained QALY/avoided deterioration in severity; <0 indicates cost savings and a positive outcome. **Threshold analysis: how many gained QALYs are needed to obtain cost effectiveness. ***The AHEAD model includes Markov modeling. ****NNT ¼ number needed to treat to avoid 1 year of full-time care (FTC).

Table 13.7 Economical evaluations of programs

Type of study

Program

Study period (months)

Outcome

Cost per treated patient

Cost per patient, comparator Cost diff.

ICER or similar

Quasiexperimental

Day care

12

QALYs

32809

37559

Neutral

CUA

Day care

6

Well years

CUA RCT

CGS

6

QALYs

4237

3520

4750

807

Reference

9672/well year

Wimo et al., 1994 Wimo et al., 1990

24344/ QALY

Drummond et al., 1991

Costs are expressed as US$ (2003) (PPPs).

13.4. Conclusion The health economics of dementia care is a complicated topic and, so far, only one textbook is available in the field (Wimo et al., 1998a). Even though anyone engaged in dementia care stresses the need for health economic analyses, the number of publications is still low and there is also a great need for methodological development.

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