The societal costs of dementia in Sweden 2012 – relevance and methodological challenges in valuing informal care
© The Author(s). 2016
Received: 29 June 2016
Accepted: 14 October 2016
Published: 18 November 2016
In this study, we sought to estimate the societal cost of illness in dementia in Sweden in 2012 using different costing approaches to highlight methodological issues.
We conducted a prevalence-based cost-of-illness study with a societal perspective.
The societal costs of dementia in Sweden in 2012 were SEK 62.9 billion (approximately €7.2 billion, approximately US$9.0 billion) or SEK 398,000 per person with dementia (approximately €45,000, approximately US$57,000). By far the most important cost item is the cost of institutional care: about 60% of the costs. In the sensitivity analysis, different quantification and costing approaches for informal care resulted in a great variation in the total societal cost, ranging from SEK 60 billion (€6.8 billion, US$8.6 billion) to SEK 124 billion (€14.1 billion, US$17.8 billion).
The societal costs of dementia are very high. The cost per person with dementia has decreased somewhat, mainly because of de-institutionalisation. The majority of the costs occur in the social care sector, but the costing of informal care is crucial for the cost estimates.
KeywordsCosting study Cost of illness Dementia Alzheimer’s disease Sweden
Dementia disorders are chronic, long-lasting diseases that impair cognition, social capacity and daily functioning of the persons affected. As a consequence, dementia heavily influences the situation not only for the patients themselves but also for family members and other next of kin. Furthermore, dementia disorders are also very resource-demanding and costly, which, in a setting of scarce public resources and, in many countries, ongoing changes in care systems, puts great stress on decision makers and budget holders. The worldwide societal cost of dementia care was estimated to be US$604 billion for 36 million persons with dementia (PWD) in 2010 [1, 2]. The magnitude and allocation of resource use and costs are of interest when present and future care is discussed in terms of organisation, volume and financing.
The situation in dementia care is dynamic. Demographic prognoses predict a rapid increase in the number of people affected [3–5], making the situation even more urgent, and apocalyptic scenarios of the ‘dementia bomb’ and suchlike have been presented . In contrast, some studies have indicated that age-specific incidence and/or prevalence of dementia and cognitive impairment might have decreased in high-income countries such as the United States, the United Kingdom, The Netherlands and Sweden [7–11]. Symptomatic drug treatment for Alzheimer’s disease has been available for almost 20 years. Studies on potential disease-modifying agents have so far not been successful, although there are still many compounds in clinical development [12, 13]. Because of changes in long-term care policies, as well as strategies and pressures for cost containment in health care and social care systems, there is a trend towards de-institutionalisation in some countries .
In 1991, the cost of illness (COI) in Sweden was estimated to be 31 billion Swedish krona (SEK) for a dementia population of 154,000 (which is probably an overestimate of the prevalence) . For 2000, the cost was estimated to be SEK 38 billion for 133,000 PWD , and for 2005, it was estimated as SEK 50 billion for 142,000 PWD . There is also a wide range in estimates of COI for dementia in other countries . Of course, there are true differences in the COI of dementia, but the variability in COI figures could also be the result of methodological issues, such as prevalence sources, whether costs of informal care are included and how care is quantified and costed or whether clinical/convenience samples or population-based studies are used as sources for the cost estimates.
The purpose of this paper was to estimate the societal COI of dementia in Sweden in 2012, using different approaches to highlight methodological issues. We also aimed to compare the time trend in COI from 2000 to 2012 when using similar methods. This paper is based on a report that was commissioned by the Swedish National Board of Health and Welfare (NBHW) .
COI studies can be prevalence- or incidence-based . If the aim is to estimate the economic burden during a certain time period, the prevalence approach is recommended; however, if the aim is to illustrate the economic consequences of policy change (e.g., prevention, treatment, changes in care organisation), the incidence approach may be preferred . Another issue is whether a bottom-up or top-down approach is to be used (or a combination of the two). In a bottom-up study, resource use and costs of a defined (often local) population are described in detail, and, in a step 2, results are extrapolated to a much larger population, such as all persons with the disease in a country. Such results can be based on cross-sectional point estimates or on longitudinal data. Study populations in bottom-up studies can be population-based or be derived from other kinds of study populations (e.g., clinic/hospital-based, convenience samples). In top-down studies, the share of total resource use and cost of care in the region that is attributable to the disease of interest are calculated, often using data from registers and other databases. A combination of the two approaches may also be required, depending on data availability. The distinction between costs for patients with a certain disease (‘gross costs’) and costs due to the disease (‘net costs’) is important; attributability of costs to a specific condition cannot be observed directly, but can only be inferred (e.g., by comparing with costs for subjects without the condition).
The perspective of a COI study defines the viewpoint of the calculations. The societal perspective includes all costs, regardless of the payer, and is recommended by most published guidelines for economic evaluations . In the case of dementia, this means that informal care is assigned a cost. The viewpoint can also be narrowed down, such as a county council, a municipality, an insurance company or a health maintenance organisation.
Costs are often divided into direct costs (‘costs of resources used’ for medical and social/non-medical care) and indirect costs (‘costs of resources lost’ due to production losses because of morbidity and mortality). Informal care by non-professionals such as next of kin may be difficult to classify in these terms. If the informal carers are being remunerated to some extent, it may be regarded as a direct cost, though this often applies to only a low proportion of the total caregiving time. If the carer has partly given up work to care for the PWD, this constitutes an indirect cost equal to the value of the lost productivity. Informal care by retired persons or care during ‘non-working’ time is more complicated to evaluate and assign an opportunity cost, because there is no market for this resource.
In this paper, we apply several methodological approaches. We use a prevalence-based societal perspective in which both bottom-up and top-down methods are employed, and we also present estimates of both gross and net costs.
In a prevalence-based COI study, the number of persons with the disease in question is essential. Because individual diagnoses of all PWD are not available, estimates of the number of PWD are necessary. Such estimates are based on demographic statistics (from Statistics Sweden in this paper) and age-specific dementia prevalence figures (e.g., in 5-year classes). In this paper, we use such meta-analysis-based figures presented by the Swedish Agency for Health Technology Assessment (SBU) : 1% for persons aged 60–64 years, 1.5% for 65–69 years, 3% for 70–74 years, 6% for 75–79 years, 13% for 80–84 years, 24% for 85–89 years, 34% for 90–94 years and 45% for 95 years and older. Because there is a discussion currently regarding age-specific dementia prevalence , we also present results based on other prevalence sources [3, 8, 9, 24–28] in the sensitivity analysis. In the base option, we assume that in 2012 there were 158,000 PWD in Sweden. The number of incident cases of dementia in Sweden in 2012 (based on demographic statistics and adjusted for prevalent dementia cases) and the meta-analysis by Fratiglioni et al.  is estimated at 25,000 persons.
Care organisation in Sweden
PWD in Sweden receive care using several care alternatives. Basically, health care is provided by doctors, registered and enrolled nurses, occupational therapists and physiotherapists, in the own homes of the elderly, in an institution or in hospitals. The municipality’s social services offer home help, such as help with daily activities (shopping, cooking, cleaning and laundry and/or personal care such as help with feeding, bathing, toileting, getting [un]dressed and into/out of bed). There is also a range of other services, such as home nursing, transportation services, day care, short-term institutional care, meals on wheels, security alarms, housing adaptations and technical aids. A varying amount of informal care is also common at home. (There is also a small amount of informal care in institutions .)
Medical direct costs include costs of hospital care, physician clinic visits, physician visits in primary care, visits to emergency units without hospitalisation, visits to and by rehabilitation staff, drug costs and costs of diagnoses. Non-medical direct costs include costs of institutional care, day care and social services. In this paper, indirect costs are restricted to production losses for patients.
Estimated distribution of the Swedish population with dementia in the care system in 2012
Proportion of PWD (%)
Number of PWD
Of those with respite care
All institutional care
Institutionalised <65 years old
Resource use and costs
The list of potential resources that PWD might use is large, and it is necessary to focus on resource items that are significant cost drivers. All costs are expressed as 2012 SEK (1 € = SEK 8.77, 1 US$ = SEK 6.96).
Social care sector
Care for PWD in the social care sector consists of support at home by home help, day care, respite care and long-term institutional care.
About 92,000 PWD are estimated to be living at home. For the quantification of support at home, we used the approach of the Resource Utilization in Dementia (RUD) instrument , where formal (and informal) care is divided into three proportions: support in personal/basic activities of daily living (PADL), instrumental activities of daily living (IADL) and supervision. For home help services, we used figures based on PADL and IADL. On the basis of Swedish studies where the RUD instrument has been used [40, 41], we estimated the average daily support at 0.5 h/day. This average figure also includes zero users. The hourly cost for formal home care is derived from the Swedish Association of Local Authorities and Regions (SALAR) .
The Swedish Dementia Registry (SveDem) was established in 2007. It is an Internet-based quality register where several indicators can be followed over time according to national guidelines, such as diagnostic workup, medical treatment and support from community . On the basis of extrapolations from the annual reports from SveDem  (adjusted for incomplete coverage), we estimate that 10,000 PWD have access to day care every year. The annual unit cost for day care is derived from statistics from the NBHW .
The method of classifying institutional care in Sweden has changed over the years. In a report for the NBHW regarding staffing of long-term institutional care, three levels were used: living in facilities purposely designed for people with dementia (group living, collective living, group dwelling) , high-staffed (e.g., nursing homes) and low-staffed (residential care facilities). Table 1 displays the distribution and proportions of PWD in the different forms of institutional care, based on updates of the previous COI estimates [16, 17] and calculations in the Swedish national dementia guidelines . There are also small numbers of PWD younger than 65 years of age as well as PWD using short-term respite care embedded in institutional facilities (annualised rate).
An expanding and valuable resource in dementia care is the dementia nurse, who organises support for families, coordinates care and also works with overall planning of dementia care. It is estimated that there were about 500 such nurses in 2012 . As unit cost for the dementia nurses, we used the average monthly salary for specially trained nurses, including the social security charges .
Medical care sector costs
Care for PWD in the medical care sector consists of hospital care, visits to primary care, visits to various specialist clinics (including some of the costs for diagnostic procedures), visits to emergency rooms, use of rehabilitation resources and drug use. The unit costs for these resources are derived mainly from the costing database from SALAR .
Figures regarding the use of hospital inpatient care are derived from the Swedish National Patient Register for the diagnoses F000, F001, F002, F009, F012, F020, F021, F022, F023, F028, G300, G301, G308 and G309 .
Outpatient care visits
Similarly to the figures for inpatient hospital care, visits to specialists were derived from the National Patient Register . Regarding other outpatient care visits (e.g., primary care, occupational therapists, physiotherapists), there is no national statistical source available. However, on the basis of data from the SNAC project [51–53], it was estimated that PWD made two visits per year to family physicians and four visits each per year to district nurses, occupational therapists and physiotherapists.
On the basis of an inquiry by the Swedish Ministry of Health to specialist clinics, it was estimated that there were 14,000 diagnostic workups per year in 2003 . In the SveDem register, about 4000 newly diagnosed PWD are registered every year . According to a recent questionnaire sent from SveDem to the memory clinics in Sweden, about 50% of those who went through the diagnostic workup got a final dementia diagnosis. Because the register does not have a completely nationwide coverage, we assume that there still are 14,000 diagnostic workups in specialist care. The figures for primary health care are more difficult to estimate. In SveDem, about 3500 newly diagnosed PWD are registered in primary care. About two-thirds of the primary care centres are part of SveDem, and, given the assumption that 50% also get a dementia diagnosis in primary care, we assume that there are about 10,000 diagnostic procedures in primary care every year. In a paper from SveDem, the costs for diagnostic workup were estimated to be SEK 7017 in primary care and SEK 12,095 on the specialist level. These cost figures are in line with those reported in another Swedish paper from the Kalmar region of Sweden .
The Nordanstig and Kungsholmen SNAC sites in Stockholm include individual and diagnosis-related (e.g., dementia) information about drug use and its related costs .
Quantification and costing of informal care and unpaid work are controversial and complicated issues [56–58]. It is challenging to delimit time spent by caregivers on different caregiving tasks (e.g., supervision) and to determine whether each activity has an opportunity cost (i.e., what is the value of the caregiver’s time in its best alternative use). We relied on several previous studies in which researchers used the RUD framework to estimate caregiving time . To avoid overestimates of informal care, we aimed to use population-based data wherever possible. One such source is the Nordanstig project , and now we can also add data regarding the amount of informal care from the database in the SNAC project (baseline 2001–2003 and follow-up 2007–2009). On the basis of information from these sources, we estimate that PWD receive a daily support of 1.9 h in PADL and IADL. We also have data from other Swedish studies on informal care with the RUD instrument [41, 59, 60]. In these studies, the range was 1.5–3.3 h per day in PADL and IADL support. These figures, as well as data on supervision needs, are used in the sensitivity analysis.
Several costing approaches have been discussed [56, 61–64]. In theory, informal care should be valued by the opportunity cost of the carers’ time. However, identifying this opportunity cost is not straightforward . Market prices are not available, except for carers of working age, and, in many cases, it is not apparent what the ‘best alternative use’ of the carers’ time is. The main providers of informal care are spouses and the children/children’s spouses of the PWD. Thus, in the base case, the cost of informal care is weighted and based on studies where the proportion of spouses (two-thirds) and children (one-third) as carers is estimated [33, 40, 66]. For the daughters/daughters in law and sons/sons in law, the average cost per hour of paid work (SEK 270) was used , whereas for leisure time, we used the opportunity cost per hour as 35% of the average wage . The resulting weighted hourly cost of informal care was SEK 152. In the sensitivity analysis, other costing approaches are presented.
Unit costs in base case
Unit cost (SEK)a
Medical care sector
Emergency room visits
Outpatient care visits (specialists)
Primary care physician visits
Other outpatient care visits
Diagnosis in primary care
Diagnosis in specialist care
Social care sector
Higher-staffed institutional care
Lower-staffed institutional care
Owing to the variability in underlying sources and different quantification and costing approaches, several other parameters were tested in a sensitivity analysis. There are many other sources for age class prevalence, and in recent years several studies indicating a decline in prevalence have been presented, although some other estimates suggests an increase (European Brain Council , Matthews et al. , Lobo et al. , SNAC-Kungsholmen , EURODEM , Alzheimer Cooperative Valuation in Europe , EuroCoDe  and Alzheimer’s Disease International [ADI] ). Owing to the discussions regarding the quantification and costing of informal care, several alternative options have been tested: the amount of informal care with supervision added to activities of daily living (in total 4.7 h/day), alternative sources for the amount of informal care (1.5–5.3 h/day in PADL and IADL) [41, 59, 60, 69], various costing of informal care (a zero value, a replacement cost instead of opportunity cost, SEK 434/h  and an alternative source for the opportunity cost [SEK 31/h, based on the Swedish Road Association] ). Institutional care costs are one of the heaviest cost drivers in dementia care. Figures regarding the proportion of PWD in different forms of institutional care also vary [30, 32, 33, 51–53, 71], and thus we test an option where the proportion of PWD is lower. The unit costs for institutional care are also varied (25th and 75th percentiles).
Cost attributable to dementia (‘net’ costs)
The costs presented as the main option can be regarded as ‘gross costs’ because they comprise the costs of PWD including costs for conditions other than dementia. One way to estimate costs that are attributable to dementia (‘net costs’) is to calculate the cost difference between costs for PWD and for people without dementia. The estimates are based on the total direct costs of care for the elderly in Sweden (65 years old and above), which in 2012 were SEK 182 billion, covering 102 billion SEK in the social care sector (municipalities) and SEK 80 billion in the health care sector (the county councils) . Estimates are possible for the population 65 years and older, which represented about 148,000 of the 158,000 PWD in 2012. It is assumed that the costs for PWD aged 65 years and older are the same as those for all PWD. The influence of production losses on PWD was so low that this was not included in the ‘net’ cost estimates. The net costs can be estimated using a step-by-step procedure (see Table 7 in the Results section below).
Total societal costs of dementia in Sweden in 2012 (base option)
Cost (million SEK)a
Per PWD, SEKa
Medical care sector (county councils)
Emergency room visits
Outpatient care visits (specialists)
Primary care physician visits
Other outpatient care (e.g., rehabilitation)
Total medical care sector
Social care sector (municipalities)
Institutional care (permanent)
Short-term respite care
Total social care sector
Societal cost of dementia (in millions SEK, adjusted to cost level of 2012) in 2012, 2005 and 2000 in different sectors
Medical care sector
Social care sector
Number of PWD
Cost per PWD (SEK)
One-way sensitivity analysis of costs of informal care
Total costa (billion SEK)
Informal carea (billion SEK)
Cost per PWDa (SEK)
Higher amount of hours
Supervision time added
Supervision time added and replacement cost
Alternative opportunity cost
Zero cost for informal care
Other one-way sensitivity analyses
Costa (billion SEK)
Cost per PWD
Prevalence (number of PWD)
Matthews et al. 
Lobo et al. 
Home care: per executed hour
Home care: median hourly cost
Home care: 25th percentile per hour
Home care: 75th percentile per hour
Institutional care: 25th percentile (low staffed and high staffed)
363,920 and 565,811
Institutional care: 75th percentile (low staffed and high staffed)
534,142 and 639,828
Institutional care: proportion PWD
50% in low-staffed, 80% in high-staffed
Institutional care: proportion PWD
40% in low-staffed, 50% in high-staffed
Estimated ‘net’ costs of dementia (SEK)
Social care sector
Medical care sector
Direct cost of care for people aged 65+ years
181,729 million SEK
Direct costs of dementia
52,166 million SEK
Direct costs for PWD aged 65+ yearsa
48,864 million SEK
Direct costs of care for people without dementia aged 65+ years
132,865 million SEK
Number of people aged 65+ years
Number of people aged 65+ years without dementia
Direct cost per person aged 65+ years without dementia
Step 2: costs per PWD
Gross cost per person with dementiaa (Table 2)b
Exclude: direct cost for person without dementia as above
Exclude: costs of informal care of PWD (Table 2)
‘Net’ direct costs
‘Net’ total costs (including informal care)
Step 3: aggregated costs
Aggregated ‘net’ direct costs of dementia aged 65+ years (148,000 PWD)
37,272 million SEK
Aggregated ‘net’ direct costs all dementia (158,000 PWD)
39,790 million SEK
Aggregated ‘net’ costs all including informal care aged 65+ years (148,000 PWD)
47,235 million SEK
Aggregated ‘net’ costs all including informal care all dementia (158,000 PWD)
50,426 million SEK
Three major findings are obvious: (1) The costs of dementia care are very extensive; (2) the majority of the costs occur in the social care sector (the municipalities); and (3) the quantification and costing of informal care are crucial for the cost estimates. When the Swedish figures (total costs of SEK 400,000 [approximately € 45,000, approximately US$ 57,000]) are compared with other COI figures, the need for transparency is clear. In a review, Jönsson and Wimo found a range between €6000 and €64,000 per case in different European countries, where the main reason for this variation was methodological issues . A similar variation in worldwide COI studies was found in the dementia report by the SBU . In the worldwide cost estimates presented by ADI , it was concluded that, besides methodological issues, the interaction between informal care and the social care sector (including, e.g. long-term institutional care) was crucial for the cost differences: low/no resources for long-term institutional care resulted in a high proportion of the costs of informal care and vice versa.
The most important cost driver in Sweden is the cost of institutional care. The institutional concept is wide and includes a variety of care settings where the least common denominator, in our opinion, is staffing around the clock. We have used three institutional levels (nursing homes, dementia-designated care such as group living  and residential care alternatives for the aged or similar) to cover the different content of care and costs, and in the sensitivity analysis we have a further variation in costs of institutional care. Although some range occurs in the costs of institutional care in the sensitivity analysis, it is not of the same magnitude as when different approaches for the quantification and costing of informal care were tested . In the literature, there is an extensive variation in the quantity, ranging from 1.5 h to 16 h per day [61, 72, 74–76]. This great variation depends mainly on how many components of informal care are included; the lower figures represent only PADL support, while the higher figures also include IADLs and supervision/surveillance. Another factor is whether the sources of informal care are based on clinical/convenience samples or on population-based studies, the latter including zero values with lower hourly figures as a result. The costing issue is also crucial, and several methods have been proposed [56, 61–64]. The assumptions used for the mix between informal carers of working age and retired carers also have implications for the costing approach as well as for long-term care policies . Although the opportunity cost is recommended by most economists, it is not always easy to identify it . Market prices are not available, except for carers of working age, and, in many cases, it is not apparent what the ‘best alternative use’ of the carers’ time is. Thus replacement costs or average wage or suchlike are used in many COI studies, most often resulting in higher costs. Because the different methods of quantification and costing of informal care resulted in such a great difference in final costs, it is obvious that this issue needs transparency but must also be a target for future methodological discussions. Validated instruments are essential where it is clear how informal care is quantified as well as a transparent presentation of how unit costs for informal care are obtained and valued. A sensitivity analysis is crucial to highlight the variability and to make comparisons with other studies possible.
The relatively high proportion (39%) of drug costs in the total costs of the county councils may have several explanations. First, the county councils pay for all drug use of PWD, even if, for example, they are cared for in municipal nursing homes. Second, the costs of hospital care as well as the costs of outpatient specialist care are based on register data, where a diagnosis of dementia often is not registered even if a patient has a dementia disorder . Thus, these costs may be underestimated, resulting in a relatively higher proportion of the costs of drugs for the county councils. In contrast, even if there is a debate regarding the prevalence of dementia [7–11], the use of different prevalence sources in the sensitivity analysis did not alter the COI figures significantly.
Although the societal costs of dementia are substantial, the costs per person were lower in 2012 than in 2000 and 2005. The main reason is the de-institutionalisation trend in Sweden. The number of long-term care beds in institutions in Sweden (persons aged 65 years and above) decreased from about 119,000 in 2000 to 100,400 in 2005 and 90,500 in 2012 , which resulted in lower costs (per person) in 2012 than in 2000 and 2005. Consequently, the relative impact of costs of informal care has increased. This reflects, at the same time, a gradual shift of responsibilities from the state to the families. The question whether this is good or bad cannot be answered by a COI study. There are no assessments of the quality of care or the quality of life of PWD or the informal carers in our data. Such consequences can be analysed with instruments such as DEMQOL (for PWD)  or CarerQol (for informal carers) , and they are usually incorporated as outcomes in cost-effectiveness analysis of interventions. In light of expected demographic changes, with a considerably rapid increase in the numbers of people aged 80 years and older after 2020 , these trends in the change of the care structure need a profound analysis.
It is obvious that transparency is crucial in COI studies, otherwise comparisons are not meaningful. A comprehensive and transparent sensitivity analysis also highlights different analytical approaches, which makes comparisons with other COI studies easier.
The societal costs of dementia are very high. The cost per PWD has decreased somewhat, mainly because of de-institutionalisation. The majority of the costs occur in the social care sector, but the costing of informal care is crucial for the cost estimates.
Alzheimer’s Disease International
Alzheimer Cooperative Valuation in Europe
European Brain Council
Cost of illness
Instrumental activities of daily living
Swedish National Board of Health and Welfare
Personal activities of daily living
Persons with dementia
Resource Utilization in Dementia
Swedish Association of Local Authorities and Regions
Swedish Agency for Health Technology Assessment
Swedish National Study on Aging and Care
Swedish Dementia Registry
We are grateful for the support in data collection provided by the memory clinics in Sweden, SveDem and the statistical department at the Swedish Social Insurance Agency.
Funding for this study was provided by Swedish Brain Power; the Swedish Ministry of Health and Social Affairs; the Swedish National Board of Health and Welfare; and the Centre for Research & Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden.
Availability of data and materials
All calculations are made in Excel. If the editor wish to see these files, they need to be edited because the cost estimates have been done during several years with complex interactions and links between sheets.
AW had the main responsibility for preparing and drafting the manuscript, and he made substantial contributions to study design, acquisition of data, and analysis and interpretation of the results. LJön was involved in study design as well as analysis and interpretation of results, and he made significant intellectual contributions to the manuscript. LF was involved in acquisition of data as well as analysis and interpretation of the results, and she made significant intellectual contributions to the manuscript. POS was involved in acquisition of data as well as analysis and interpretation of the results, and he made significant intellectual contributions to the manuscript. AG was involved in study design as well as analysis and interpretation of results, and he made significant intellectual contributions to the manuscript. AS was involved in acquisition of data as well as analysis and interpretation of the results, and he made significant intellectual contributions to the manuscript. LJoh was involved in study design as well as analysis and interpretation of results, and he made significant intellectual contributions to the manuscript. All authors read and approved the final manuscript.
AW co-authored the 2010 and 2015 World Alzheimer Reports.
None (see also funding information under Acknowledgements heading). Outside the submitted work, AW has attended expert meetings with Novartis and Lundbeck, has received a grant from Nutricia (payment to Karolinska Institutet) and participates on an advisory board for Eli Lilly (payment to Karolinska Institutet); LJön is an employee of Lundbeck; and AG is a partner at Quantify Research. All other authors declare that they have no competing interests.
Consent for publication
Ethics approval and consent to participate
Because this paper is based on secondary sources and no individual persons with or without dementia were involved, there was no need for ethical permission or consent to participate.
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- Wimo A, Jönsson L, Bond J, Prince M, Winblad B. Alzheimer Disease International. The worldwide economic impact of dementia 2010. Alzheimers Dement. 2013;9(1):1–11. e3.View ArticlePubMedGoogle Scholar
- Wimo A, Prince M. World Alzheimer Report 2010: the global economic impact of dementia. London: Alzheimer’s Disease International; 2010.Google Scholar
- Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: a systematic review and metaanalysis. Alzheimers Dement. 2013;9(1):63–75.View ArticlePubMedGoogle Scholar
- Wimo A, Winblad B, Aguero-Torres H, von Strauss E. The magnitude of dementia occurrence in the world. Alzheimer Dis Assoc Disord. 2003;17(2):63–7.View ArticlePubMedGoogle Scholar
- Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, et al. Global prevalence of dementia: a Delphi consensus study. Lancet. 2005;366(9503):2112–7.View ArticlePubMedPubMed CentralGoogle Scholar
- Lovestone S. Can we afford to develop treatments for dementia? J Neurol Neurosurg Psychiatry. 2002;72(6):685.View ArticlePubMedPubMed CentralGoogle Scholar
- Schrijvers EM, Verhaaren BF, Koudstaal PJ, Hofman A, Ikram MA, Breteler MM. Is dementia incidence declining? Trends in dementia incidence since 1990 in the Rotterdam Study. Neurology. 2012;78(19):1456–63.View ArticlePubMedGoogle Scholar
- Matthews FE, Arthur A, Barnes LE, Bond J, Jagger C, Robinson L, et al. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. Lancet. 2013;382:1405–12.View ArticlePubMedPubMed CentralGoogle Scholar
- Qiu C, von Strauss E, Bäckman L, Winblad B, Fratiglioni L. Twenty-year changes in dementia occurrence suggest decreasing incidence in central Stockholm. Sweden Neurology. 2013;80(20):1888–94.View ArticlePubMedGoogle Scholar
- Rocca WA, Petersen RC, Knopman DS, Hebert LE, Evans DA, Hall KS, et al. Trends in the incidence and prevalence of Alzheimer’s disease, dementia, and cognitive impairment in the United States. Alzheimers Dement. 2011;7(1):80–93.View ArticlePubMedPubMed CentralGoogle Scholar
- Langa KM, Larson EB, Karlawish JH, Cutler DM, Kabeto MU, Kim SY, et al. Trends in the prevalence and mortality of cognitive impairment in the United States: is there evidence of a compression of cognitive morbidity? Alzheimers Dement. 2008;4(2):134–44.View ArticlePubMedPubMed CentralGoogle Scholar
- Schneider LS, Mangialasche F, Andreasen N, Feldman H, Giacobini E, Jones R, et al. Clinical trials and late-stage drug development for Alzheimer’s disease: an appraisal from 1984 to 2014. J Intern Med. 2014;275(3):251–83.View ArticlePubMedPubMed CentralGoogle Scholar
- Mangialasche F, Solomon A, Winblad B, Mecocci P, Kivipelto M. Alzheimer’s disease: clinical trials and drug development. Lancet Neurol. 2010;9(7):702–16.View ArticlePubMedGoogle Scholar
- OECD Health Statistics [database on the Internet]. OECD. 2014. http://stats.oecd.org/index.aspx?DataSetCode=HEALTH_STAT. Accessed 14 Dec 2014.
- Wimo A, Karlsson G, Sandman PO, Corder L, Winblad B. Cost of illness due to dementia in Sweden. Int J Geriatr Psychiatry. 1997;12(8):857–61.View ArticlePubMedGoogle Scholar
- Wimo A, Jönsson L. The societal costs of dementia [in Swedish]. Stockholm: Socialstyrelsen; 2011.Google Scholar
- Wimo A, Johansson L, Jönsson L. The societal costs of dementia and the number of demented in Sweden 2005 [in Swedish]. Report 2007-123-32. Stockholm: Socialstyrelsen; 2007.Google Scholar
- Swedish Agency for Health Technology Assessment (SBU). Dementia: a systematic review. Report 172E/1-3. Stockholm: SBU; 2008.Google Scholar
- Wimo A, Jönsson L, Fratiglioni L, Sandman P, Gustavsson A, Sköldunger A. Demenssjukdomarnas samhällskostnader i Sverige 2012. Report 2014-6-3. Stockholm: Socialstyrelsen; 2011.Google Scholar
- Rice DP, Hodgson TA, Kopstein AN. The economic costs of illness: a replication and update. Health Care Financ Rev. 1985;7(1):61–80.PubMedPubMed CentralGoogle Scholar
- Andlin-Sobocki P, Jönsson B, Wittchen HU, Olesen J. Cost of disorders of the brain in Europe. Eur J Neurol. 2005;12 Suppl 1:1–27.View ArticlePubMedGoogle Scholar
- Siegel JE, Torrance GW, Russell LB, Luce BR, Weinstein MC. Gold MR; Panel on Cost Effectiveness in Health and Medicine. Guidelines for pharmacoeconomic studies: recommendations from the panel on cost effectiveness in health and medicine. Pharmacoeconomics. 1997;11(2):159–68.View ArticlePubMedGoogle Scholar
- Swedish Agency for Technology Assessment in Health Care (SBU). Dementia [in Swedish]. Stockholm: SBU; 2006.Google Scholar
- Gustavsson A, Svensson M, Jacobi F, Allgulander C, Alonso J, Beghi E, et al. Cost of disorders of the brain in Europe 2010. Eur Neuropsychopharmacol. 2013;21(10):718–79.View ArticleGoogle Scholar
- Lobo A, Launer LJ, Fratiglioni L, Andersen K, Di Carlo A, Breteler MM, et al. Neurologic Diseases in the Elderly Research Group. Prevalence of dementia and major subtypes in Europe: a collaborative study of population-based cohorts. Neurology. 2000;54(11 Suppl 5):S4–9.PubMedGoogle Scholar
- Hofman A, Rocca WA, Brayne C, Breteler MM, Clarke M, Cooper B, et al. EURODEM Prevalence Research Group. The prevalence of dementia in Europe: a collaborative study of 1980–1990 findings. Int J Epidemiol. 1991;20(3):736–48.View ArticlePubMedGoogle Scholar
- Alzheimer Cooperative Valuation in Europe (ALCOVE). ALCOVE synthetic report 2013: a general presentation of ALCOVE. Paris: ALCOVE; 2013.Google Scholar
- European Collaboration on Dementia (EuroCoDe). WP7 - prevalence rates. Luxembourg: Alzheimer Europe; 2009.Google Scholar
- Fratiglioni L, Launer LJ, Andersen K, Breteler MM, Copeland JR, Dartigues JF, et al. Neurologic Diseases in the Elderly Research Group. Incidence of dementia and major subtypes in Europe: a collaborative study of population-based cohorts. Neurology. 2000;54(11 Suppl 5):S10–5.PubMedGoogle Scholar
- Nordberg G, Wimo A, Jönsson L, Kåreholt I, Sjölund B, Lagergren M, et al. Time use and costs of institutionalised elderly persons with or without dementia: results from the Nordanstig cohort in the Kungsholmen Project - a population based study in Sweden. Int J Geriatric Psychiatry. 2007;22(7):639–48.View ArticleGoogle Scholar
- Fratiglioni L, Viitanen M, Backman L, Sandman PO, Winblad B. Occurrence of dementia in advanced age: the study design of the Kungsholmen Project. Neuroepidemiology. 1992;11 Suppl 1:29–36.View ArticlePubMedGoogle Scholar
- Lagergren M, Fratiglioni L, Hallberg IR, Berglund J, Elmståhl S, Hagberg B, et al. A longitudinal study integrating population, care and social services data: the Swedish National study on Aging and Care (SNAC). Aging Clin Exp Res. 2004;16(2):158–68.View ArticlePubMedGoogle Scholar
- Lagergren M, Holst G, Rahm-Hallberg I, Wimo A. Behov och insatser för de äldre i SNAC-kommunerna. Jämförelser från SNAC baslinjeundersökningar 2001 i Karlskrona, på Kungsholmen, i Nordanstig och i Skåne. SNAC-K rapport 3. Stockholm: Stockholm Gerontology Research Centre; 2002.Google Scholar
- Socialdepartementet. På väg mot en god demensvård: samhällets insatser för personer med demenssjukdomar och deras anhöriga. Stockholm: Socialdepartementet; 2003. p. 47.Google Scholar
- Socialstyrelsen. Vård och omsorg om äldre. Report 2007-131-12. Stockholm: Socialstyrelsen; 2007.Google Scholar
- Socialstyrelsen. Konsekvensutredning – förslag till föreskrifter och allmänna råd om ansvaret för personer med demenssjukdom och bemanning i sär-skilda boenden. Report Dnr 7993/2011. Stockholm: Socialstyrelsen; 2012.Google Scholar
- Socialstyrelsen. Nationell utvärdering – vård och omsorg vid demenssjukdom 2014: rekommendationer, bedömningar och sammanfattning. Report 2014-2-4. Stockholm: Socialstyrelsen; 2014.Google Scholar
- Socialstyrelsen. Tillståndet och utvecklingen inom hälso - och sjukvård och socialtjänst: lägesrapport 2014. Report 2014-2-3. Stockholm: Socialstyrelsen; 2014.Google Scholar
- Wimo A, Wetterholm AL, Mastey V, Winblad B. Evaluation of the healthcare resource utilization and caregiver time in anti-dementia drug trials. In: Wimo A, Jönsson B, Karlsson G, Winblad B, editors. Health economics of dementia. London: John Wiley & Sons; 1998. p. 465–99.Google Scholar
- Nordberg G, von Strauss E, Kåreholt I, Johansson L, Wimo A. The amount of informal and formal care among non-demented and demented elderly persons—results from a Swedish population-based study. Int J Geriatr Psychiatry. 2005;20(9):862–71.View ArticlePubMedGoogle Scholar
- Mesterton J, Wimo A, By A, Langworth S, Winblad B, Jönsson L. Cross sectional observational study on the societal costs of Alzheimer’s disease. Curr Alzheimer Res. 2010;7:358–67.View ArticlePubMedGoogle Scholar
- Sveriges Kommuner och Landsting (SKL). Kostnad per brukare - Jämförelser mellan kommuner inom omsorg om äldre och personer med funktionsnedsättning – utfall 2011. Stockholm: SKL; 2012.Google Scholar
- Religa D, Spangberg K, Wimo A, Edlund AK, Winblad B, Eriksdotter-Jonhagen M. Dementia diagnosis differs in men and women and depends on age and dementia severity: data from SveDem, the Swedish Dementia Quality Registry. Dement Geriatr Cogn Disord. 2012;33(2-3):90–5.View ArticlePubMedGoogle Scholar
- SveDem. Svenska Demensregistret: årsrapport 2012. Stockholm: SveDem; 2013.Google Scholar
- Socialstyrelsen. Kostnadsmått 2012: öppna jämförelser av socialtjänsten 2013. Report 2013-10-1. Stockholm: Socialstyrelsen; 2013.Google Scholar
- Socialstyrelsen. Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010: stöd för styrning och ledning. Stockholm: Socialstyrelsen; 2010. ISBN 978-91-86585-18-1.Google Scholar
- Dahlrup B. Nationellt nätverk för Demenssjuksköterskor. Malmö, Sweden: Nationellt nätverk för Demenssjuksköterskor; 2013. http://www.swenurse.se/Sektioner-och-Natverk/Nationellt-natverk-for-demenssjukskoterskor/Om-oss/ (in Swedish). Accessed 31 Oct 2016.
- Statistics Sweden (SCB). Genomsnittlig månadslön inom primärkommunal sektor efter yrke, ålder, kön och år: 2012. http://www.statistikdatabasen.scb.se/pxweb/sv/ssd/?rxid=6fef5754-338d-467c-bb2b-3c393b95d7bf (in Swedish). Accessed 22 Aug 2013.
- Kostnad per patient (KPP) database. Sveriges Kommuner och Landsting (SKL). 2013. https://skl.se/ekonomijuridikstatistik/statistik/kostnadperpatientkpp.1076.html (in Swedish). Accessed 22 Aug 2013.
- Socialstyrelsens statistikdatabas, 2013. http://www.socialstyrelsen.se/statistik/statistikdatabas/diagnoserislutenvard (in Swedish). Accessed 22 Aug 2013.
- Wimo A, Persson G, Sjölund BM, Lagergren M. SNAC i Nordanstig – Resultat från delprojektet Vårdsystem – baslinjeundersökning våren 2001. Report SNAC-rapport 4. Stockholm: Stockholm Gerontology Research Centre; 2002.Google Scholar
- Osterman J, Lagergren M, Lundberg L. Vårdkonsumtion bland äldre boende på Kungsholmen och Essingeöarna. SNAC-K rapport 6. Stockholm: Stiftelsen Stockholms Läns Äldrecentrum; 2004. p. 4.Google Scholar
- Hallberg IR, Karlsson S, Westergren A, Dozet A, Lithman T, Elmstahl S, et al. Kommunal och regional vård till äldre: vård och omsorg i Eslöv, Hässleholm, Malmö, Osby och Ystad till personer 65 år och däröver, våren 2001. Report 1: En delstudie i SNAC (GÅS). Lund, Sweden: Institutionen för omvårdnad, Lunds universitet, Region Skåne och Samhällsmedicinska institutionen, UMAS, Lundsuniversitet; 2001.Google Scholar
- Jedenius E, Wimo A, Strömkvist J, Winblad B, Andreasen N. Dementia program in primary care, five years of experience [abstract]. Int Psychogeriatr. 2007;19 Suppl 1:102–3.Google Scholar
- Sköldunger A. Dementia and use of drugs: economic modelling and population-based studies. Thesis. Stockholm: Karolinska Institutet; 2015.Google Scholar
- van den Berg B, Brouwer WB, Koopmanschap MA. Economic valuation of informal care: an overview of methods and applications. Eur J Health Econ. 2004;5(1):36–45.View ArticlePubMedGoogle Scholar
- van den Berg B, Spauwen P. Measurement of informal care: an empirical study into the valid measurement of time spent on informal caregiving. Health Econ. 2006;15(5):447–60.View ArticlePubMedGoogle Scholar
- Jönsson L. Economic evaluation of treatments for Alzheimer’s disease. Stockholm: Karolinska Institutet; 2003.Google Scholar
- Gustavsson A, Brinck P, Bergvall N, Kolasa K, Wimo A, Winblad B, et al. Predictors of costs of care in Alzheimer’s disease: a multinational sample of 1222 patients. Alzheimers Dement. 2011;7(3):318–27.View ArticlePubMedGoogle Scholar
- Gustavsson A, Jönsson L, Rapp T, Reynish E, Ousset PJ, Andrieu S, et al. Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study. J Nutr Health Aging. 2010;14(8):648–54.View ArticlePubMedGoogle Scholar
- McDaid D. Estimating the costs of informal care for people with Alzheimer’s disease: methodological and practical challenges. Int J Geriatr Psychiatry. 2001;16(4):400–5.View ArticlePubMedGoogle Scholar
- Karlsson G, Jönsson B, Wimo A, Winblad B. Methodological issues in health economics of dementia. In: Wimo A, Jönsson B, Karlsson G, Winblad B, editors. Health economics of dementia. London: John Wiley & Sons; 1998. p. 161–9.Google Scholar
- Lanska DJ. Time is money—or is it? Estimating the costs of informal caregiving. Neurology. 2002;58(12):1718–9.View ArticlePubMedGoogle Scholar
- Fukami M. Monetary valuation of unpaid work in 1996—Japan. Tokyo: Department of National Accounts, Economic Research Institute, Economic Planning Agency; 1998.Google Scholar
- Drummond MF, O’Brien B, Stoddart GL, Torrance GW. Methods for the economic evaluation of health care programmes. Oxford, UK: Oxford University Press; 1997.Google Scholar
- Wimo A, von Strauss E, Nordberg G, Sassi F, Johansson L. Time spent on informal and formal care giving for persons with dementia in Sweden. Health Policy. 2002;61(3):255–68.View ArticlePubMedGoogle Scholar
- Genomsnittlig månadslön, kronor efter sektor, yrke, kön och tid, samtliga sektorer, samtliga yrken 2012. Stockholm: Statistiska Centralbyrån. 2013. http://www.statistikdatabasen.scb.se/pxweb/sv/ssd/?rxid=6fef5754-338d-467c-bb2b-3c393b95d7bf (in Swedish). Accessed on 10 Dec 2013.
- Johannesson M, Borgquist L, Jönsson B, Rastam L. The costs of treating hypertension—an analysis of different cut-off points. Health Policy. 1991;18(2):141–50.View ArticlePubMedGoogle Scholar
- Wimo A, Elmståhl S, Fratiglioni L, Sjölund BM, Sköldunger A, Fagerström C, Berglund J, Lagergren M. Formal and informal care of community-living older people: A population-based study from the Swedish National study on Aging and Care. J Nutr Health Aging (in press).
- Vägverket. Vägverkets samhällsekonomiska kalkylmodell: ekonomisk teori och värderingar. Stockholm: Swedish Road Authority; 1997.Google Scholar
- Lagergren M, Hallberg IR, Holst G, Wimo A. Behov och insatser för de äldre i SNAC-kommunerna. Lund, Sweden: Faculty of Medicine, Lund University in Region Skåne; 2003.Google Scholar
- Jönsson L, Wimo A. The cost of dementia in Europe: a review of the evidence, and methodological considerations. Pharmacoeconomics. 2009;27:391–403.View ArticlePubMedGoogle Scholar
- Wimo A, Mattson B, Krakau I, Eriksson T, Nelvig A, Karlsson G. Cost-utility analysis of group living in dementia care. Int J Technol Assess Health Care. 1995;11(1):49–65.View ArticlePubMedGoogle Scholar
- Alzheimer’s Disease International (ADI). World Alzheimer Report 2010: the global economic impact of dementia. London: ADI; 2010.Google Scholar
- Hurd MD, Martorell P, Langa KM. Monetary costs of dementia in the United States. N Engl J Med. 2013;369(5):489–90. doi:10.1056/NEJMc1305541.View ArticlePubMedGoogle Scholar
- Knapp M, Prince M. Dementia UK. London: Alzheimer’s Society; 2007. https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2759. Accessed 31 Oct 2016.
- Colombo F, Llena-Nozal A, Mercier J, Tjadens F. Help wanted? Providing and paying for long-term care. Paris: Organisation for Economic Co-operation and Development; 2011.Google Scholar
- Alzheimer’s Disease International (ADI). World Alzheimer Report 2011: the benefits of early diagnosis and intervention. London: ADI; 2011.Google Scholar
- Socialstyrelsen. Äldre och personer med funktionsnedsättning – regiform år 2012: vissa kommunala insatser enligt socialtjänstlagen. Contract 2013-3-23. Stockholm: Socialstyrelsen; 2013.Google Scholar
- Smith SC, Lamping DL, Banerjee S, Harwood RH, Foley B, Smith P, et al. Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychol Med. 2007;37(5):737–46.View ArticlePubMedGoogle Scholar
- Brouwer WB, van Exel NJ, van Gorp B, Redekop WK. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006;15(6):1005–21.View ArticlePubMedGoogle Scholar
- Statistics Sweden. Population projections. 2014. http://www.statistikdatabasen.scb.se/pxweb/sv/ssd/?rxid=377526ed-23eb-4938-bb38-8a81b07d66a2 (in Swedish). Accessed 14 Dec 2014.
- Socialstyrelsen. Patientrelaterad redovisning av verksamhet och kostnader (KPP) inom primärvård: metod, genomförande och användning med exempel från Borlänge sjukhus. Report 2005-124-5. Stockholm: Socialstyrelsen; 2005.Google Scholar
- Wimo A, Religa D, Spangberg K, Edlund AK, Winblad B, Eriksdotter M. Costs of diagnosing dementia: results from SveDem, the Swedish Dementia Registry. Int J Geriatr Psychiatry. 2013;28(10):1039–44.View ArticlePubMedGoogle Scholar