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. 2020 May:85:103070.
doi: 10.1016/j.apergo.2020.103070. Epub 2020 Feb 8.

Conceptualizing caregiving activities for persons with dementia (PwD) through a patient work lens

Siddarth Ponnala  1 , Laura Block  2 , Aloysius J Lingg  1 , Amy J Kind  3 , Nicole E Werner  4
Affiliations

Conceptualizing caregiving activities for persons with dementia (PwD) through a patient work lens

Siddarth Ponnala et al. Appl Ergon. 2020 May.

Abstract

Informal caregivers are an integral part of care delivery for persons with dementia (PwD). Informal caregivers take part in a wide range of care activities both individually and collaboratively with other caregivers. Caregiving often involves high demands in the face of limited resources, which can lead to stress, burden, and burnout. To support caregivers, we need to conceptualize caregiving activities they perform, and the networks and roles through which they perform work. We performed a directed content analysis on interview data from twenty caregivers and applied a human factors approach to characterize informal caregiving work. Our results revealed 1) nuances in caregiving roles, 2) differences in caregiving networks, and 3) 13 categories of caregiving activities characterized by time commitments; physical, cognitive and socio-behavioral demands; and varying network dependencies. These findings can be applied in future studies to evaluate the needs of caregiving networks and how to better support them.

Keywords: Dementia caregiving; Human factors engineering; Patient work.

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Conflict of interest statement

Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Figures

Figure 1:
Figure 1:. Maps of Dementia Care Networks
Examples of large (left) and small (right) network of caregivers for one PwD with many different individuals interacting and contributing at different levels.
See this image and copyright information in PMC

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