Desire to institutionalize in Alzheimer's caregivers: An empirical analysis on Italian data
Introduction
Alzheimer’s disease (AD) is the most frequent cause of institutionalization of adult subjects (Aguero-Torres, von Strauss, Viitanen, Winblad, & Fratiglioni, 2001). Recent investigations have documented that “ Institutionalization rates among individuals suffering dementia considerably exceeded those rates of community-based samples” (Luppa, Luck, Brahler, Konig, & Riedel-Heller, 2008, p. 5). Institutionalization costs may have a tremendous impact on health care systems and/or on family’s budgets depending on the public/private financing system of residences for AD patients. At the same time, home care of a patient usually determines significant costs (Colucci et al., 2014) which, lacking public home assistance should be covered by the own family. Caregiving burden is perceived by family members also because of their involvement in assistance and supervision of patients or of the need to cover the costs of specialized employees for the care of their relatives.
In the recent years the reasons of the choice of AD patients institutionalization was investigated with particular attention to the emergence of the desire of institutionalization among family and/or caregivers (McCaskill, Burgio, Decoster, & Roff, 2011; Morycz, 1985; Spruytte, Van Audenhove, & Lammertyn, 2001). The caregiver decision to institutionalize a relative affected by AD is the final step of a complex process characterized by conflicting feelings, doubts and afterthoughts, that may persist even after the decision has been taken (Paulson & Lichtenberg, 2011; Vario & Sansoni, 2000). The main findings provided by the existing literature support the idea that desire of institutionalization (DI) is influenced by the characteristics of the patient and by those of the family caregivers.
On the one hand, caregivers whose AD-affected relative shows behavioral disturbances (Spijker et al., 2011) and severely reduced autonomy (Vernooij-Dassen et al., 1997) face a hard burden and therefore develop DI more easily. On the other hand, caregivers’ perception of this burden is linked to their socio-demographic characteristics (Spruytte et al., 2001) which play a significant role in the arising of DI. Cultural aspects as well play an influential role in the process of DI development (Calderón & Tennstedt, 1998; Sansoni et al., 2013; Gwyther, Reed, Friedman, & Schulman, 2004). It has been found that Afro Americans and Latinos living in the USA turn to institutionalization of old relatives much later than the Caucasian population (Gaugler, Duval, Anderson, & Kane, 2007), probably because of the higher ethic value assigned to caregiving in this community (Mausbach et al., 2004).
This work has investigated factors affecting DI in a sample of Italian AD patients (n = 171) by using cross-sectional data collected through a survey of primary informal caregivers assisting relatives affected by AD in two cities, Naples and Rome, located respectively in the Centre and in the South of the country. Italy is an interesting context for assessing the determinants of the emergence of DI among primary caregivers. In spite of a diffuse concern about the actual strength of family ties in contemporary societies, several studies have shown that close family relations and intergenerational solidarity still characterize the Mediterranean areas (Glaser & Tomassini, 2000; Tomassini et al., 2004). In Center and Southern of Italy, in particular, taking care of an ill relative has a strong ethical value, also because these are areas where religion is very important in everyday life (WIN-Gallup International, 2012) and caregiving of the husband/spouse is a promise exchanged during weddings celebrated according to the catholic ritual, which is largely diffused in Italy.
The purpose of the present study was to evaluate how often caregivers report DI in this particular context and to identify patient-related and caregiver-related variables showing a statistically significant correlation with the emergence of DI.
Section snippets
Data collection and methodology of analysis
This paper relies on data collected through an original survey of primary informal caregivers assisting AD patients at home. Caregivers were interviewed during their patients’ visits to two Alzheimer care units located in Rome (at “La Sapienza” University) and Naples (at the “A. Cardarelli” Hospital). In terms of local populations, Rome (approximately 3 million of inhabitants) is the most densely populated city in Italy while Naples (approximately 1 million of inhabitants) is the third one. In
Results
Table 2 summarizes statistics calculated for the variables observed throughout the survey. Summary statistics (mean and standard deviation) were calculated for the overall sample as well as for the two subsamples, the one collected in Naples and the other in Rome. When looking at them, one has to bear in mind that the mean value of a binary (0,1) variable is equal to the relative frequency of the modality 1.
A strong prevalence of caregivers who never desired to institutionalize their AD
Discussion
The demographic characteristics of the primary informal caregivers investigated in our survey are similar to those reported by other studies on Italian caregivers (CENSIS, 1999; Sansoni, Anderson., Varona, & Varela, 2013; Vellone, Piras, Talucci, & Cohen, 2008; Zanetti, Binetti, Bianchetti, & Trabucchi, 1989).
Caring of home assisted AD-affected relatives is aimed at helping patients who suffer from both cognitive and functional deficits which may evolve not in parallel. Difficulty of patients
Conclusions
Caring for a family member with AD is not a simple task. Dealing with AD can have negative effects on informal caregiver physical, psychological and emotional health as well as on their social and financial life. However, the institutionalization of an AD-affected relative is a painful decision which is frequently further discouraged by the scarcity of adapted facilities and the need of an economical contribution in case of institutionalization in private facilities not receiving public support.
Conflict of interest
Authors declare no conflict of interest.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Acknowledgments
Drs Colucci and Molino were recipients of PhD fellowships from Camerino University. Authors are greatly indebted to Dr Angiola Maria Fasanaro for her advice and useful suggestions.
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