Academic Talk About Dementia Caregiving: A Critical Comment on Language

Abstract

A language that characterizes the work of informal caregivers as burdensome dominates the academic literature on dementia caregiving. Informal caregiving is a socially important activity of significant economic benefit that is both gendered female and primarily carried out by women. Words collocated with caregiving and caregivers were extracted from a sub-set of recent professional journal articles on dementia caregiving. Collocations were numerically described and grouped into three categories: (1) recipient (or what caregivers receive as a result of caregiving), (2) generative (what caregivers do or generate as a result of caregiving), and (3) demographic (the general context of caregivers and caregiving). Collocations in the recipient category were most numerous followed by demographic and generative collocations. Overall collocations suggested dementia caregiver/caregiving passivity in the context of an unrewarding, burdensome experience. Questions raised in relation to findings focus on whether the view of caregiving revealed may further inscribe oppressive practices related to disabilities, age, and gender roles.

Diaries as research data in a study on family caregivers of people with Alzheimer's disease: methodological issues

“…Family caregivers of people with dementia have been studied from different perspectives during the past few decades. The accumulating research data indicate the importance of eliciting the subjective viewpoints of family caregivers in order to capture the multidimensional and dynamic nature of the caregiving process (Kramer 2002, Hunt 2003). Based on previous research findings, it can be concluded that a family caregiver's life situation is demanding not only psychologically (Wright et al.…”

“…In addition, family caregivers have both positive and negative experiences of taking care of the ill family member (Andrén & Elmståhl 2005). Some recent reports (see Kramer 2002, Nolan et al. 2002) have criticized the theoretical and conceptual premises of studies of family caregivers for being limited.…”