Governance and finance of long-term care - University of Birmingham

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Allen et al., 2011 Governance and Financing of LTC | European Overview 4.3 The governance of informal care In Europe, informal carers provide the majority of LTC for older people (Marin et al., 2009). Changing demographic and social factors result in greater LTC need and add to pressures on families to provide informal care. National governments face a series of related challenges, including: • How to balance national reliance on informal care with progressive employment policy • How to recognise informal carers as ‘partners’ or ‘co-‐providers’ of care, improve the status of this role and give them a voice in relevant decision-‐making processes • How to best support carers in their everyday work, in particular older carers and those that have significant care needs themselves • How to safeguard the quality of informal care • How to approach regulations for migrant workers within informal care • How to engage more people to be involved in voluntary work in long-‐term care and how to organise and manage volunteer effort more effectively. Informal care takes the form of predominantly female work within families and of neighbours, but it also concerns a wide informal market of migrant workers. In previous work on informal care (Triantafillou et al., 2010), it was suggested that the definition of informal as opposed to formal care corresponds to a set of common characteristics: • Care is mainly provided by family, close relatives, friends or neighbours • Carers are non-‐professionals and not trained to provide care; but in some cases they may benefit from special training • Carers have no contracts regarding care responsibilities • Carers are not paid although they more and more commonly obtain financial contributions • Carers perform a wide range of tasks (also performed by formal carers) including emotional support and assistance • No limits to time spent on care – never/rarely officially ‘off duty’ • No general entitlement to social rights Triantafillou et al. (2010) also describe the developmental state of policies targeting informal carers and the extent of their implementation through various supporting measures and some good practice examples, based on three major findings. • Firstly, before 2000, recognition of the important role of families and informal care networks was not a key issue in most European countries. Over the past decade, changing perceptions of care and how informal care could best fit into the delivery of services by professional organisations, led to corresponding efforts to encourage the legally recognized status of informal carers. Determinants for this changing perception include a mixture of demographic and epidemiological factors coupled with economic, social and cultural changes (such as women seeking increasing access to the labour market). These gave rise to higher levels of need for LTC services, while at the same time questioning the sustainability of informal care networks, especially in countries where professional services were 36
Allen et al., 2011 Governance and Financing of LTC | European Overview lacking and in which informal carers (predominantly women) were still providing the majority of LTC for older people (Marin et al., 2009). • Secondly, the Lisbon employment target of enhancing employment rates, especially for women and senior workers (55-‐64 years), was another strong incentive for recognition of informal care. It called for measures to allow female carers to gain access to the labour market, as well as for senior workers to remain able to work and to provide care. • Thirdly, policies to ensure the continued and optimal contribution of informal carers, alongside professional services, depend strongly on the degree of accessibility of older people with LTC needs to professional services. Access to services is directly linked to the level of development of LTC policies in each country, which depends on the time period when each one acknowledged the strong impact of ageing on LTC provision and thus the fact that LTC services ought to be considered as an essential component of their respective welfare states. While this recognition took place in the decade of the 1970s for the Scandinavian countries and the Netherlands, it came twenty or more years later for most of the other EU15 countries. 4.3.1 Main issues and gaps in governance of informal carer support policies Triantafillou et al. (2010) identified three significant issues leading to the numerous gaps in governance principles of policies for informal carers, relating to their optimal connection with overall LTC policies addressing older people’s needs. The first issue is that informal carers are often both care-‐providers and as well as people in need of care and should be supported in both regards. Amongst the European countries examined, the contribution and role of informal carers ranges between two extreme models and is directly related to the degree of access to professional services. In the first model (Mediterranean welfare regime), the informal carers’ contribution is assumed as they take on almost the entire service provision due to lack of public professional services. At the opposite end of the scale, in the superseded carer model (Twigg & Atkin, 1994) represented by Sweden and the Netherlands, carers have the choice not to provide hands-‐on care – or to a limited extent only, according to what is seen as ‘usual’ – due to the provision of adequate and easily accessible formal services for older people. In this case, a specific informal carer policy seems to be less pressing, as long as the professional services remain available and accessible, while being responsive and of satisfactory quality for both stakeholders; but of course this comes at the price of higher LTC funding. In between these two extremes, in countries where formal services are accessible to some extent, informal carers continue to play two entangled roles: as co-‐providers of services with the professionals; and/or as co-‐clients together with the older person, with needs for support from formal services (Carretero et al., 2009). Both roles call for measures responding to their specific needs, including those addressing the issue of how to support the oldest informal carers in the long term to avoid all types of care burden, as well as those allowing an optimal balance between work and care. The second issue relates to achieving a balance for informal carers between working and caring; in order to reach the Lisbon target regarding levels of women’s and seniors’ employment, how can this choice be made possible without compromising the care they provide? The development of cash benefits was foreseen as a potential tool to solve this dilemma. Their introduction in the area of LTC gained momentum during the early 1990s in almost all European countries but with very different dynamics. In countries with limited access to professional services, 37
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