Critical Analysis of the Scales Assessing Assistance Provided by Family Caregivers.

Abstract

Background: While the literature on caregiver-assessment scales often focuses on the quantitative and psychometric aspects of the scales, we wished to examine the discourse on caregiving, caregivers and care-recipients (particularly, people with dementia) produced by these scales. What discourse does it help to crystallise and naturalise by dint of being used widely, with unresolved ethical and political issues?

Methods: We analysed two well-known scales that are widely used in both research and clinical settings and conceived among others for people with dementia: Zarit and, offering a sharp contrast, the CRA. We performed semantic network analysis using EVOQ software (https://www.evoq.be/) to visualise the links between the terms.

Results: Whereas the Zarit scale is entirely built around a view of caregiving and the care-recipient as a burden, the CRA offers a different discourse. Instead of considering the provision of help as an emotional load, the desire to help is highlighted. Rather than considering the care-recipient as a weight, the recognition of his or her contribution to the relationship with the caregiver is suggested. Moreover, the caregiver is presented as a relative who is capable of active strategies in order to cope with the reality of care without becoming exhausted.

Conclusions: The comparison of our two analyses shows the extent to which the scales produce a discourse which needs to be examined before use, given its epistemological, ethical and political significance. Clinicians and researchers need to make choices between the many existing instruments and be able to justify them. Their reasons should include not only the psychometric qualities of the chosen tool, but also the discourse that it underpins, so as to avoid contributing to the promotion of a vision of care and its givers and recipients that would be reductive, moving us further away from a caring society.