Power dynamic and personhood in the dementia caregiving context

Abstract

People with dementia (PwDs) are generally perceived as powerless in decision-making, which can result in undermining their personhood, and lack of agency in the decision-making process. Putting this into the Asian context, where the doctrine of filial piety grants parents higher power, a dilemma occurs when children caregivers have to maintain a balance between the traditional authority role of their parents and their sick role as dementia patients. Caregivers have to respect the PwD’s personhood and at the same time ensure adequate care. Most existing literature only focuses on family power dynamics involving healthy family members, overlooking people with illness. As such, this study aims to understand personhood in PwDs from a power status perspective and through a relationship model, and to explore the impacts of different power strategies used in the decision-making process on the personhood of PwDs. The three dimensions of power described by Lukes’ and Buron’s models of personhood form the theoretical premise of this study. Qualitative individual interviews of 18 caregivers of parents with dementia were conducted, and data analysed thematically.

Findings suggested that the power status between caregivers and their parents tends to be different in relation to different decisions. Caregivers tend to have more power in decisions related to nursing homes, medical care, outings and finances, whereas PwDs tend to have more control in lifestyle and habit-related decisions. In addition to the power status of the caregiving dyad, this study developed a relationship model of personhood of PwDs based on the data. The model contains four levels, highlighting the importance of different attributes of personhood across the dementia trajectory. Higher levels imply more critical attributes of personhood, with the fourth level of the model including relations with others, relations with future self, relations with past and current self, and relations with private self. This relationship model broadens the scope of personhood study in dementia literature and provides caregivers with a useful guideline for care, where preserving the PwD’s private self is as essential as focusing on the basic level of care to sustain their life.

Adopting the three dimensions of power framework of Lukes, this study identifies different strategies applied by both caregivers and PwDs during decisional conflict. Caregivers use strategies including exchange, foot in the door, external pressure, deception and override when engaging in overt decisional conflict. They also influence their parents more subtly by using strategies such as exclusion, choice restriction and acceptance of sick role. These strategies have different implications for PwDs’ personhood, covering their agency, identity, status and value.

This study adds to the existing literature on dementia caregiving and decision-making by exploring the micro-interactions within caregiving dyads, and reveals that PwDs may not be as powerless as shown in previous research. This finding could serve as an essential guideline for caregivers to effectively interact with their parents with dementia during daily care.