1 Introduction

The population of Europe is ageing rapidly. Older adults do not comprise a homogeneous population, particularly in terms of health and lifestyle. About 24.3 million people worldwide cope with dementia. This number will treble by the year 2040 (Ferri et al. 2005). On the level of the individual occupant, age-related health problems can be the basis for home modifications and retrofitting, moving, or simply living under less favourable conditions (van Vliet 2004). Older adults with dementia (OAWD) have specific housing and care needs, given their physical and cognitive status (van Hoof and Kort 2009), which in turn have consequences for the housing market, the public housing task, and the provision of care. National and local governments are in a process of transforming the sectors of housing and care in order to accommodate the growing population of OAWD and to provide them with the type and right amount of care they need. Unfortunately, the figures and policies regarding housing and care for OAWD in Europe are not centrally documented. O’Malley and Croucher (2005) state that “throughout the policy literature there is little to guide practitioners, service planners or relatives in housing-related choices or issues for older people with dementia. As the incidence of dementia rises against an apparent policy vacuum, it is timely and relevant to examine the research evidence that exists with regard to housing for this relatively neglected minority of older people”. This paper provides some information relevant to these professionals and may contribute to solving the aforementioned issues for OAWD.

This paper explores and summarises (1) the demographics of dementia in Europe, (2) the framework in which the care and welfare regimes of EU member states are organised, and (3) the solutions that EU member states choose for care and housing of OAWD. The paper zooms in on the situation in The Netherlands, a country that is actively transforming its policies and practice in relation to dementia.

2 Demographics in the EU

Within Europe, there are large differences in the total number of people with dementia per country (Table 1), as well as in prevalence rates (Wimo et al. 2007). According to Alzheimer Europe (AE 2006a), there were about 5.4 million people with dementia in the EU-25 in 2005. Numbers are predicted to double for Western Europe and to treble for Eastern Europe by 2040. According to Brookmeyer et al. (2007), there were about 7.21 million people with dementia in Europe in 2006. This number is estimated to be 16.51 million for the year 2050. The highest number of people with dementia is given by Wimo et al. (2007), who estimate the number to be 8.07 million.

Table 1 Dementia in the EU in 2005
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3 Care and welfare regimes in the EU: financing

The way care and health services are provided depends partly on a country’s care and welfare regime. According to Nies and Berman (2004), four main types of regimes can be distinguished in the EU, primarily based on the perspective of financing of care.

  1. 1.

    The ‘Beveridge’ or Anglo-Saxon system: public provision and ‘single payer’ financing from taxes, in which the paying authority is responsible for managing the services provided.

  2. 2.

    The ‘Bismarck’ or Central European system: a variety of ‘quasi-public’ payers and corporatist arrangements with the state, social insurance-funded and controlled by legal private organisations.

  3. 3.

    ‘Mediterranean’ or Southern European systems: mixed systems with elements of national health insurances and others from social insurance models. Strong element of family responsibility and a less-developed public long-term care sector.

  4. 4.

    ‘Eastern European’ or developing former socialist systems: strong tradition (and expectation) of state provision. Resources are scarce and the role of the state has changed.

According to Pommer et al. (2007), there are roughly three ways in which health care regimes are organised in Western Europe. In short, the Scandinavian model is based on the individual autonomy of citizens; it puts primary responsibility for the own care provision on individuals. Governments step in when individuals experience health problems. The Continental model, which is based on the autonomy of the nuclear family, puts responsibility primarily on direct family members in case of health problems. In the Mediterranean model, this responsibility is placed on the extended family (Pommer et al. 2007), although its role is changing due to demographics and economic processes (AE 2006a). These models are based on the perspective of responsibility for providing care. Based on the perspective of the provision of care, Pommer et al. (2007) distinguish four regimes, ordered from the perspective of formal or informal carers:

  1. 1.

    Families have a legal obligation to provide care. The state takes over this responsibility in exceptional cases (Greece).

  2. 2.

    Family responsibility exacted by the state. The state is responsible when families are unable to fulfil responsibility for caregiving (Italy, Spain).

  3. 3.

    There is collective responsibility for people that require intensive forms of care. This responsibility is ratified by law. Informal networks are responsible for people with a minor demand for care (Germany, Austria, France).

  4. 4.

    There is collective responsibility for people that require intensive forms of care. This responsibility is ratified by law. Informal care is stimulated but cannot be exacted by the state (Sweden, Denmark, The Netherlands).

The various care regimes directly determine the type and quality of services such as housing and home care. There are great differences in terms of state responsibility, funding, the role of families, and the actual availability of home care services, between and within EU member states (AE 2006a).

3.1 Costs of care

The financial and societal costs of care for people with dementia are rather significant. According to Wimo et al. (2007), the costs of informal care in 2005 were an estimated € 26.8 billion for the EU, or about € 4,700 per person with dementia (Table 1). The direct costs of dementia care are an estimated € 54.3 billion, or € 14,200 per person with dementia (Table 1). Informal care constitutes a major cost component, in particular in economically less developed regions (Wimo et al. 2007). The costs per person can vary considerably, even within the more developed countries and when considering the net domestic purchasing power (Table 1). In countries where relatives are responsible for providing care, dementia care can take about 10–25% of a family’s average net annual income (AE 2006b), including telephone costs and expenses for travelling and transportation. The ratio of time spent on care for (instrumental) activities of daily living (IADL/ADL) at home by informal carers versus formal carers in Sweden is roughly 4:1. This ratio is likely to be higher in Mediterranean countries (Moise et al. 2004). Many informal carers are older adults themselves, and health problems may arise from the stresses of caring for a loved one (Tjadens and Duijnstee 1999). In order to alleviate the burden of care, respite care is available in many countries to OAWD living at home or even in residential institutions (Moise et al. 2004). Similar to programmes for informal carers, most countries do not provide dementia-specific home help services, as do Germany, Sweden and the United Kingdom (Moise et al. 2004). Alzheimer Europe (AE 2006b) explored the impact of dementia on informal carers and found that for the majority of carers important services such as home support, day care, and residential or nursing home care were not available. About two-thirds paid themselves for home care, over half for day care, and almost 90% for residential or nursing home care (AE 2006b).

4 Care and housing solutions for dementia

The types of housing and care services and dementia care policies in various EU member states are summarised in Table 2. Some services are provided all over Europe, including assistance with small household repairs. Day care centres are available all over Europe, except for Spain and Romania. Provisions for night-time care are offered mainly in the ‘North Sea countries’ (AE 2006a).

Table 2 Available support systems, types of housing, and health care policies for dementia in a selection of nine EU member states
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4.1 Southern Europe

The organisation and provision of home care services (domestic and personal care) cannot be considered in isolation from family carers, particularly in Southern Europe (AE 2006a), where there is a cultural tradition as well as a legal obligation to care for dependent relatives. The provision of home care services by the state is considered as optional, and the availability of appropriate services tends to be unevenly distributed or simply lacking (AE 2006a). In Italy and Spain, institutional settings are limited to those people who have no access to adequate informal care and with insufficient financial resources (Pommer et al. 2007). Greece hardly offers public institutional care, meaning that people have to turn to regular medical care or private institutions. There are a limited number of institutional state facilities for those with few financial resources. People with financial means can turn to private care. There are no home care services in two-thirds of Greek municipalities (Pommer et al. 2007). In Portugal, family accommodation or boarding out (housing dependent people within families) is a form of care given to those without relatives or financial means (AE 2006a).

4.2 Central Europe

In German-speaking countries and in France, the family forms the primary mode of care. Collectively organised systems can provide formal care in situations requiring prolonged and regular care. Austria had a low use of institutional settings. In France, these settings have a poor reputation (Pommer et al. 2007). Diagnosis of Alzheimer’s disease is a factor for a non-specialised institution to refuse admission, even though France has less than ten specialised psychogeriatric institutions (Moise et al. 2004). In Germany, institutional settings play an important role (Pommer et al. 2007), including dementia-specific long-term care institutions and special care units (SCUs) called ‘Demenzstationen’ (Moise et al. 2004). Novel strategies of dementia care are supported at the national level, including group care, memory clinics, day centres, trained home visiting helpers, alternative living arrangements, group living, and music therapy (Singelenberg 2002; Diehl et al. 2003; Moise et al. 2004; Klie et al. 2005). Small-scale group accommodation (SSGA) is found both in France (cantou) and Germany (Wohngruppen) (Klie and Schmidt 2002; Klie et al. 2005). Luxembourg, Germany, Austria, and Flanders/Brussels have long-term care insurances that cover home care based on assessed needs (AE 2006a). Policies are aimed at helping people to maintain their independence and age-in-place.

4.3 Scandinavia

In Scandinavia, the governments and local authorities also take responsibility for providing care to older adults with a limited demand for care (domestic care), either directly or by granting allowances that people can use to purchase services. Partners bear primary responsibility to care for a spouse. Services are mainly funded through general taxation. There is a wide system of institutional facilities, but ageing-in-place is stimulated. Ageing-in-place has led to deinstitutionalisation movements, limiting the capacity of institutional settings to the benefits of semi-residential facilities and home care (in modified dwellings) (AE 2006a; Pommer et al. 2007). In Sweden and Denmark, SSGA was introduced as a substitute for nursing home capacity. Particularly Sweden has embraced SSGA as a successful housing arrangement (Moise et al. 2004; Klie et al. 2005). Although there are no dementia-specific group-living facilities, about 90% of available beds are occupied by OAWD. In fact, SSGA is so successful that facilities are now being integrated into other assisted-living facilities (Moise et al. 2004). Throughout Scandinavia, some nursing home capacity is used for short-term care (Moise et al. 2004).

4.4 The British Isles

In the British Isles, there are differences within the separate countries. According to O’Malley and Croucher (2005), the UK policies regarding the development of extra-care housing neglect the long-term future of OAWD and the progressive nature of dementia (Fig. 1). Moreover, policy tends to treat housing separately from care, and even more so from dementia, while an integral approach is needed. Generally, people are encouraged to age-in-place, and the UK government is promoting the construction of lifetime homes (DCLG 2008). Group-living is also common on the British Isles. Communities and Local Government plays a role in ensuring that housing support teams work to enhance joint health and social care mental health teams in the community so OAWD and (in)formal carers receive support in a range of housing settings (DCLG 2008). Access to community care services in the Republic of Ireland varies from one region to the next and has been limited. In England and Wales, the state is obliged to provide an assessment of care needs but is not actually obliged to provide the services. There is a general commitment on the part of the state to provide services to enable independence within the own home environment (AE 2006a). In Scotland, people aged 65 and over are entitled to free nursing, free personal care, and increased access to direct payments for home care services (AE 2006a). In the UK, OAWD are often referred to memory clinics when available, but are more likely to be referred to a specialist for treatment (Moise et al. 2004).

Fig. 1
figure 1

The housing continuum for persons with dementia. The presumed succession of living situations starts from living independently at home, which can be followed by living institutionally if health declines and people survive. Although this housing sequence is seen in the majority of persons with dementia, some develop dementia when residing in care and nursing homes for somatic reasons, while others pass away while living at home. The transfer from one home to the other depends on the state of the home or facility, care regime and policies, and the presence of family care. The lower diagram, partly based on Cohen and Weisman (1991), illustrates the relationship between level of services and environmental options matching the types of housing

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4.5 Eastern Europe

In Bulgaria and Poland, some home care services are provided by the state. Priority is given to older adults who lack financial means and live alone (AE 2006a). In Bulgaria, Hungary, and Poland, one can draw up a contract with third parties, which includes ceding property in exchange for care and/or maintenance (AE 2006a). In the Czech Republic, assistance with everyday tasks is not routinely provided. However, there is a commitment on the part of the state to facilitate independent living. Also in Hungary and Estonia, there is no legal obligation to provide home care services, although there is a commitment on the part of the state to provide support for the aged. In Romania, home care services only cover nursing care, which is limited to a certain number of days per year (AE 2006a).

5 Policies on housing and care for dementia in the Netherlands

According to the Dutch Alzheimer Society, there were approximately 270,000 people with dementia in 2008 (of which 10,000 are younger than 65), out of a total population of 16.4 million inhabitants. This number will rise to over 400,000 by the year 2050 (HCN 2002; VWS 2004). Nationally, dementia ranks number 10 among the most disabling health problems (VWS 2004). About half of the care dependence of older adults is allocated to dementia (HCN 2002), because intensive care is needed.

The housing trend for all older adults in The Netherlands is a succession of living situations that match the level of care needed or the amount of service desired (Fig. 1). This range generally runs from independent living in the own home with optional home care, to assisted-living facilities, residential homes for the aged or care homes, and nursing homes (van Vliet 2004). The number of older adults receiving professional care in relation to housing on a daily basis is not very large. Only 15% receive home care, 5% live in a care home, and about 2.5% reside in a nursing home (Schuurmans and Duijnstee 2003). The Netherlands Ministry of Health, Welfare and Sport works together with the Ministry of Housing, Spatial Planning and the Environment in the field of housing, care, and welfare. In order to support OAWD, the Dutch government has three main focal points in their policies, which impact the way OAWD are housed and cared for:

  1. 1.

    Ageing-in-place in the own dwelling or assisted-living facilities,

  2. 2.

    The separation of financing of residence and care, and

  3. 3.

    Substitution of institutional by non-institutional living.

5.1 Current living situation

The housing situation of the current generation of OAWD in relation to the care they receive is very diverse. The housing types mentioned in this study include the own home, care homes, nursing homes, and SSGA. The places where people with dementia live depend on the stage of dementia (Table 3; Fig. 1) and cognitive status, but also on the availability of informal carers and their ability to cope with the stresses of caring for a loved one.

Table 3 Overview of stages of dementia in relation to housing conditions and care support
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5.1.1 Ageing-in-place

An estimated 166,000 people with dementia live at home (65% of all OAWD) (HCN 2002). About 87% receive informal care only; the other 13% receive professional care at home. Professional home care and day treatment to supplement informal care are only available for a limited number of hours per week (HCN 2002). Temporary housing, so-called ‘short-stay accommodation’, is offered as respite care. In these facilities, OAWD are housed in a home-like atmosphere. There they receive care by professionals for a period of time ranging from half a day to several weeks in order to provide a break for carers (Tjadens and Duijnstee 1999; Moise et al. 2004).

When dementia progresses, OAWD become more dependent on others and eventually need 24-h monitoring or company (HCN 2002). This need cannot be fulfilled by regular professional home care. The availability, coherence, and continuity of formal care provisions determine whether informal carers can keep on giving support. Very old seniors with dementia are more likely to live alone or with a partner in need of help him/herself who cannot deal with the physical strain of caring (HCN 2002). Even though ageing-in-place is generally propagated and stimulated, the often emotional admission to a nursing home is sometimes the best and most sensible solution for all parties involved.

5.1.2 Care homes and nursing homes

In the Netherlands, about a third of all people with dementia are institutionalised (Table 2). People may develop dementia while residing in an institution for somatic reasons, or they may be institutionalised after having lived in the community (Fig. 1).

Care homes primarily provide care for older adults who are no longer capable of living entirely independently (VWS 2004) and offer single patient rooms (sometimes double patient rooms) or apartments. Provision of care forms an integral part of residence in such facilities (VWS 2004).

Nursing homes are institutions for people requiring permanent supervision, care, nursing, or convalescence that they cannot receive (to a sufficient degree) at home or in a care home. The criteria for admission to nursing homes are explicit, and a differentiation is made during assessments between the need for psychogeriatric and somatic care. Admission may be temporary or permanent. Most newly-built nursing homes consist of single patient rooms. Both care homes and nursing homes are undergoing an intensive transition process towards less general capacity and another system of financing. This includes the separation of residence and care in an effort to separate the costs for care and rent, or residence, in institutional settings. Currently, residence and care are integral parts of the services provided. Providing residence will no longer be part of public care but become part of the public housing task.

A special feature in institutional settings is the dementia special care unit, a dedicated nursing unit that provides enhanced care and a specialised programme of activities for people with dementia.

5.1.3 Small-scale group accommodation

In the light of deinstitutionalisation, an increasing capacity of SSGA has been created in the direct vicinity of, or at some distance from, large-scale institutions. In 2005, there were over 4,400 places available in these SSGAs in 349 locations. SSGA capacity is expected to rise from 4,442 in 2005 to 6,392 places in 2010 (van Waarde and Wijnties 2006), although the demand is even larger. SSGA is characterised by a surveyable size (6–8 people) and integration of a ‘normal’ householding as part of the 24-h care and surveillance offered by one or two staff members (VWS 2004; Wijnties and Paquay 2004). There is room for one’s own furniture and goods in a private living/bedroom. The kitchen unit, living room, and in most cases the sanitary units are shared. There are four types of SSGA: (1) stand-alone group accommodation in a neighbourhood, (2) group accommodation near or within a care home (or assisted-living facility), (3) group accommodation near or within a nursing home, and (4) group accommodation as part of the provision of care for the neighbourhood as a whole (lifetime neighbourhoods) (Wijnties and Paquay 2004). In the Netherlands, the basic concept of SSGA originates from care for people with a mental or physical handicap. The most important motive for creating SSGA is a combination of the increased quality of care and housing for clients in small-scale settings and the presence of large-scale availability and efficiency of the care organisation.

6 Discussion

The range of health care services and types of housing is unique per country and, contrary to popular belief, can differ a lot from the national situation even compared to neighbouring countries. Apart from the national choices in terms of financing, national values seem important too.

6.1 Care solutions

Moise et al. (2004) explicitly mention that dementia is a relatively new area of policy focus, and not all developed nations have specific policies for the condition. Housing is mentioned as one of the services for the provision of care. The policy focus has shifted to favour care of people with long-term needs within the community rather than in institutions. Responsibility for dementia is often given to one particular government ministry, although housing is of importance to several areas of government.

For the EU, there are great disparities in the provision of home care services and the need for greater support for carers, including respite care, technological solutions (AE 2006b), and appropriate housing. Even though current provisions reflect the historical, economic, political, cultural, and religious developments of each member state, governments should recognise and respect the right of people to appropriate and affordable home care services. On a macro-economic level, the provision of informal ADL care is cheaper than formal care. However, it is questionable if relatives are able to cope with the emotional burden, apart from the financial consequences. Another process in health care is task redistribution, for instance in SSGA. There, skilled nurses are replaced with people trained on a lower level in surveillance while more effort is expected from informal carers. Also, more input in terms of assistance is requested from relatives of people in SSGA compared to those in care and nursing homes.

All countries with high levels of services witness the same political processes of stimulation of ageing-in-place and deinstitutionalisation. In Europe, the chance of receiving formal care is the largest in The Netherlands and about equal in France and Denmark. Formal care is hardly an option in Greece, though in countries like Germany and Italy informal care is dominant as well (Pommer et al. 2007). These figures are likely to also apply to care for OAWD. The Netherlands has traditionally been a country with a large institutional sector. A mere two-thirds of all Dutch OAWD live at home, compared to an assumed 73% in all developed countries together (Wimo et al. 2007).

6.2 Housing solutions

The current housing stock in the EU is not able to cope with the rise in the number of people with dementia, neither quantitatively nor qualitatively, and new development is needed. A request for assistance is thought to be interpreted as an inability to continue independent living, so many older people ask for less help than necessary (Kort and Bakker 2004). Assistance, however, can also be given in the form of architectural modifications and technological solutions. These solutions may even alleviate or substitute care given by informal and professional carers. Adaptations in the level of technology in and around the dwelling take place over time due to technological progress and diminishing abilities to work with technology (Fig. 1). The use of technologies in the dwelling for daily support shifts from the resident to the (in)formal carer. People with dementia pose special restrictions on the kind of home or technology that is suitable due to a decline in cognitive function, an altered sensitivity to environmental stimuli, and frequent falling (van Hoof and Kort 2009). The slow realisation of new supportive housing projects, the methods of financing home modifications and services, and the familiarity of OAWD, their relatives, and even state services with the possibilities for specific home modifications form risk factors to ageing-in-place from a housing perspective. Even though deinstitutionalisation of the health care sector is progressing, it is unlikely that all living arrangements for people with dementia will one day be non-institutional. A scenario of all people with dementia being cared for with the help of informal and formal care in homes that have undergone modifications is not realistic. There will always be a group of OAWD that, due to health status, family situation, or financial limitations, needs institutional care and residence. However, a new gap lies around the corner; the health care sector is increasingly facing a shortage of schooled personnel, while relatives have jobs that do not allow them to care for a loved one.