Unveiling the metaphors of (in)formal care: understanding dementia through language

Metaphorical language is often used to articulate the complex nature of care and can provide valuable insights about it. By analyzing the language of formal and informal caregivers of people with dementia, we aimed to understand their conceptualization of the disease, their role, and their relationship with the patient.

We conducted a study of six focus groups with caregivers of people with dementia (N = 6 formal; N = 13 informal) as part of the Swiss adaptation of the World Health Organization iSupport for Dementia program.We ran a qualitative content analysis on metaphors caregivers used to talk about dementia, their experience, and their relationship with the person affected. The analysis included metaphors identification, meaning and linguistic complexity analysis, and contextual interpretation.

Caregivers frequently referred to people with dementia as "children" or employed natural elements to depict their burden. Metaphors reflected different aspects of caregiving. Some highlighted an individualistic perspective of maintaining independence while "patching" problems or "drowning" in challenges; others introduced a community-oriented perspective of moral dedication, such as the "mission" metaphor; others focused on the power and dependence dynamics in the person with dementia-caregiver relationship.

While common metaphors in the discourse on dementia were absent, contextual and temporally conditioned metaphors were present. Metaphors collectively provided a multifaced view of caregiving, presenting perspectives of tension between self-care and service to others.Understanding the plurality of caregivers' experiences through metaphors can enhance the caregivers-professionals communication, improve care quality, and help address stigma and misconceptions about dementia.