Etymology and Data

It is worth noticing that the two terms which are widely used in the discussion and research literature regarding the care of chronically ill and elderly, namely “family caregiver” and “informal caregiver” are not mutually exclusive but are also not the same. There is lack of agreement among the researchers, policy makers and social service providers regarding their meaning. “Family caregiver” indicates that the person taking care of the care recipient has some sort of formal attachment such as being a wife, husband, child or a parent of the recipient. “Informal caregiver” on the other hand carries more broad meaning and can refer to anyone showing some kind of personal relationship with the patients. Friends, neighbors, volunteers or community workers usually fall into this category. The common denominator however is the fact of the unpaid care given by the both groups.

​Professional, often private, care and nursing is often regulated by the government and is therefore known as formal. This differentiation is not only vital in the source literature terminology but even more importantly in how it corresponds to a data available of the two respective groups: formal and informal. In the latter the data is scarce and we are usually presented only with the estimates of the family caregiving  scale worldwide. This gap in the data is on one hand caused by the challenging nature of data collection in this particular area, like the measurement of the level of commitment or affiliation, and on the other bay the lack of adequate engagement and advocacy of the governments for the social issue that can potentially expose the inefficiencies of the national healthcare system and serious negligence of its citizens and consequently violation of human rights.
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In recent years there have been couple of attempts to identify the level of burden on the family caregivers side. One of the more significant studies - EUROFAMCARE which was an international research project funded within the 5th Framework Programme of the European Community and conducted in Poland between 2003-2004 has enabled us to estimate the number of informal caregivers in Poland to around 2 million. In America this figure is as high as 44 million people providing 37 billion hours of an unpaid care each year. This makes up 75% of all caregiving support provided in the United States and at least $375 billion savings if this care was given as regular paid services. ​