Structuring unequal relations: role trajectories in informal dementia care

Area of Science:

• Gerontology
• Sociology
• Family Studies

Background:

• Informal care role delegation is often linked to demographics like gender and proximity.
• These factors alone do not fully explain the complexities of care role assignment.
• Understanding the interpersonal dynamics is crucial for explaining care trajectories.

Purpose of the Study:

• To explore the unequal delegation of care roles within families affected by dementia.
• To identify the factors influencing the negotiation and justification of caregiving responsibilities.
• To examine how interpersonal negotiations shape structural positioning for care roles.

Main Methods:

• Qualitative study involving interviews with people with dementia and their carers.
• Data collected from 7 families in the United Kingdom.
• Analysis focused on identifying patterns in role negotiation and justification.

Main Results:

• Two distinct care roles emerged: peripheral actors and main carers.
• Role delegation was influenced by "cumulative baggage," including past conflicts and commitments.
• Unequal care distribution was justified through personalized meanings incorporating sociocultural norms.

Conclusions:

• Care role delegation in dementia is a complex process shaped by interpersonal negotiations and broader socio-cultural factors.
• Personalized meanings, while seemingly individual, reflect and reinforce societal care economies.
• Family members are structurally positioned for caregiving roles through these negotiated meanings.