Abstract
What does it mean to investigate different patterns of care? What can be learnt about patterns of informal care from comparisons between different countries and cultures? Taking as a starting point a 3-year multidisciplinary European research project supported by FLARE and the CNSA (FLARE (Future Leaders of Ageing Research in Europe) and CNSA (Caisse Nationale de Solidarité pour l’Autonomie)), this article proposes an analysis of the patterns of care for patients with Alzheimer’s disease and their processual nature. To this end, it considers, in turn, the viewpoints of in-home patients themselves and those of their close caregivers. In light of empirical data collected through monographs in France, Greece, and Sweden, this analysis traces the contours of a micro-sociological, comprehensive, and contextual approach mainly inspired by the interactionist school of thought. More specifically, we interviewed 140 patients with Alzheimer’s disease living at home and their caregivers. Additionally, we included 100 observations of care situations. Aside from the definition of a macro- and micro-social analytical scale, the aim of this article is not to compare the data arising from interviews and observations with an analysis of public policies and the institutional system of each country. Neither is it to examine institutional care and the viewpoints of professional caregivers. By focusing on the informal care sector, the objective was to reconstruct analytically the subjective experience of care from the point of view of patients and informal caregivers, by exploring these experiences in distinct sociocultural situations.
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- 1.
Although professional caregivers on each site were interviewed, it is beyond the scope of this chapter to discuss their practices and rationales. However, we will discuss the data gathered in the observation sessions and interviews carried out amongst patients and informal caregivers.
- 2.
There is extensive literature about this evaluation tool. The founding article is Folstein et al. (1975).
- 3.
Austin (1979) defines illocutionary as any act of language whose effects may be felt by its object.
- 4.
In accordance with the rules of confidentiality and anonymity, all the first names used in the context of this article are pseudonyms.
- 5.
We look at this point in detail in the section of this paper dedicated to the carer, under the title: The Idea of Anticipatory Grief.
- 6.
For example, housewives, widows or divorcees who claim to be in good health, are considered as being most available to fulfil the role of principal carer—in the eyes of the entourage as much as those of the patient.
- 7.
This distinction is based on the historically determined division of work between men and women, such as described notably by the Male Breadwinner Model developed by women’s studies in Anglo-Saxon countries (cf. Orloff 1993).
- 8.
It should be noted that the caregivers are capable of choosing which skills to develop during the period of care for the patient. It would be wise to examine the modalities of the decision-making. High on the list would no doubt be considerations around the question of “dirty work” (cf. Rimbert 2006).
- 9.
For an overview of the issue, cf. Expertise Collective Inserm (2007).
- 10.
Deuil blanc (translator’s note).
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Acknowledgments
The chapter was reviewed by Monique Membrado (University of Toulouse II) and Marcel Drulhe (University of Toulouse II). The preparation of this manuscript was supported financially by FLARE (Future Leaders of Ageing Research in Europe) and CNSA (Caisse Nationale de Solidarité pour l’Autonomie). I thank Alain Grand, Unit INSERM UMR 1027, for his investment in the development of this research project.
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Meidani, A. (2014). Alzheimer’s Disease, Patients, and Informal Caregivers: Patterns of Care in France, Sweden, and Greece. In: Leist, A., Kulmala, J., Nyqvist, F. (eds) Health and Cognition in Old Age. International Perspectives on Aging, vol 10. Springer, Cham. https://doi.org/10.1007/978-3-319-06650-9_13
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