by Dr. Lorraine Frisina Doetter – Senior Lecturer in Public Health, University of Bremen and senior consultant for WHO/Europe.
The German long-term care (LTC) system was introduced in 1994, as a result of strong economic and demographic pressures which encompassed population ageing, low birth rates since 1965, and rising female labour market participation, rendering the traditional care giver model increasingly obsolete [1]. With it, the youngest branch of social insurance was established within the welfare state. The main policy objectives of the German LTC system, both then and now, centre upon five main goals: (1) to provide social security against the risk of need for care in a manner that is akin to insurance against illness, accidents, unemployment, and protecting income in old age; (2) to help reduce the physical, mental, and financial stresses related to need for care; (3) to enable people to stay in their homes for as long as possible, with services based on the principles of prevention and rehabilitation before care, outpatient care before inpatient care, and short stay care before full-time inpatient care; (4) to improve social security for care givers who are otherwise not employed in order to encourage people to take up informal care giving, as well as to compensate for the effects of having to terminate/reduce employment to provide care; and (5) to expand and consolidate the care infrastructure and encourage competition amongst service providers [2].
Within this policy context, the main setting for care remains, first and foremost, that of the individual’s home, with professionals providing routine ambulatory services either in place of or in combination with informal care givers. Residential care within nursing facilities continues to be seen as a last resort. Despite the fact that care recipients in Germany have enormous latitude to choose the type of benefit they wish to receive (i.e., tax-free household transfers directly to beneficiaries; benefits in-kind; or a mix thereof), the high out-of-pocket costs associated with nursing home care tend to be prohibitive, further incentivizing the take-up of formal care and/or informal care within the home.
But what can be said of home-based care within Germany? Given popular support and enthusiasm around concepts such as ‘aging-in-place’ and ‘autonomy’, it would appear that the German approach is in line with current appetites in public policy. However, does care within the individual’s home always represent the best or most equitable care solution? Or, can we envisage alternatives beyond the home and institution which might be more suited to meeting the care needs of specific LTC populations such as dementia sufferers?
Dementia, regarded as one of the costliest brain disorders [3] that typically leads to institutionalization [4], is expected to affect three million people in Germany and 115 million people worldwide by the year 2050 [5]. The government’s response to this mounting demographic challenge has been to redefine the care-level grades through the use of a new assessment instrument that better accounts for cognitive impairment [6,7]. This has been accompanied by dramatic increases in cash and in-kind benefits across the board, as well as growing interest and investment in innovative care models that can provide more choice and flexibility to beneficiaries, while reducing the need for costly institutionalization.
One alternative care model that has gained special attention since first emerging in 1995 in Germany [8] is shared housing arrangements (“ambulant betreute Wohngemeinschaften” or SHAs), in which a limited number of six to eight people in need of care rent private rooms in ordinary apartments, while sharing a common space, domestic support, and access to nursing care. Argued as particularly well-suited to the needs of dementia sufferers who require a more familiar environment than found in traditional nursing homes [9], the concept aims to provide a small-scale, home-like facility with ample leeway for individual activities and autonomy, alongside group-based activities [9]. SHAs seek to engage residents in meaningful daily routines such as cooking and cleaning and other forms of self-care. Typically, a case manager responsible for all residents is on the premises and organizes ambulatory professional care services through the LTC insurance. SHAs also rely on the social involvement and support of relatives, friends, and community volunteers [8, 10].
SHAs are premised especially on the notion that family involvement is essential to the well-being of care dependents, an assumption supported by evidence comparing the quality of life of residents within SHAs that have different frequencies in the number of visits by relatives [10]. Beyond helping to combat social isolation in old age, family members are said to be crucial for passing on important biographical information about the care dependent to service professionals, thereby allowing for greater person-centred care to take place [11–13]. However, it bears noting that the formal inclusion of family in the SHA model presents a double-edged sword: on the one hand, it corresponds with the wishes of relatives who generally want to stay involved in the care giving process despite living apart from the afflicted [12,13]. Research suggests that the concept of small-scale living arrangements provides family members with a lessened burden of care but with greater satisfaction compared to that of traditional nursing facilities [13]. On the other hand, the integration of family members into the SHA care scheme has, in practice, proven to be challenging due to, amongst other factors, the absence of close relatives [10]. Given the current emphasis placed on family involvement, the SHA concept may create a de-facto barrier to access for care dependents that are single or childless.
In view of the postulated advantages associated with SHAs, and the recent drive by German policy makers to support alternative forms of care, a series of financial incentives by the state have been introduced to encourage their establishment [14]. In addition to increasing benefits through the LTC insurance for all, including SHA residents, the state provides explicit financial grants to establish residential groups and barrier free homes, as well as pays an additional monthly supplement of ca. 200€ per resident, allowing for the coordination of care in SHAs [15].
Owing to state incentives and growing public interest in alternative care, particularly over the past 15 years, SHAs have been increasing in number across Germany: whereas the report of the Kuratorium Deutsche Altershilfe estimated 143 residences in 2003 [16], 200 residences were estimated in 2006 [17], and 3121 residences were estimated to be in operation as of 2013 [18]. Still, compared to more conventional care settings, whether within the home or in a nursing facility, the number of SHAs remains modest [6, 7]. Research points to challenges to access and implementation posed by institutional barriers lodged within the administrations of the Länder (the states), which have great discretion in the regulation of SHAs, as well as biases that de-incentivize certain groups from taking-up SHA care (e.g., low socio-economic; childless persons; rural populations; and certain morbidity profiles) [15].
Looking ahead, more research will be needed to understand both the promises and pitfalls of this novel model of LTC and to truly understand the potential it has to diversify the care-setting landscape in Germany. To date, only limited evidence on the quality of care in and cost-effectiveness of SHAs is available and, as a whole, point to mixed findings [19, 20, 21]. What is clear from the German experience with SHAs is that alternative models of LTC beyond the individual’s home and the institutional setting are conceivable and, given adequate support by government, possible. As societies across the globe face the enormous chances and challenges associated with aging populations, international exchange on novel approaches to care is fundamental for progress. As most people would agree, when it comes to care, the more choice the better.
About the author:
Dr. Lorraine Frisina Doetter is a Senior Lecturer in Public Health, “Global developments in health care systems and long-term care services” (A04 Project) at the Collaborative Research Center 1342, Global Development Dynamics in Social Policy, at the University of Bremen in Germany. Dr. Frisina Doetter also works as a senior consultant for WHO/Europe.