Navigating dementia care: a qualitative study of family care partners’ experiences in managing behavioural and psychological symptoms in Lima, Peru

TL;DR

This study explores how family caregivers in Lima, Peru cope with the emotional and behavioral challenges of caring for people with dementia.

Contribution

The study provides novel insights into dementia caregiving experiences in Latin America, focusing on underrepresented populations.

Findings

Caregiving for dementia involves significant emotional and behavioral challenges.

Adaptive strategies like communication changes and environmental adjustments help manage symptoms.

Emotional well-being of caregivers is crucial for effective dementia care.

Abstract

Supporting a person living with dementia involves multiple challenges, particularly when responding to changes in behaviour and psychological symptoms, which can be emotionally demanding for care partners. Despite this, limited research has examined how care partners in Latin America experience and respond to these symptoms. Therefore, this study aims to gain an understanding of how family care partners of persons living with dementia experience and cope with behavioural and psychological dementia symptoms (BPSD).

A qualitative study was carried out using semi-structured interviews with 17 family care partners of individuals with clinically confirmed dementia and BPSD, recruited from a private neurology clinic in Lima, Peru. Data were analysed using reflexive thematic analysis.

Three main themes were identified: (1) caregiving as an emotional and behavioural challenge, (2) the role of adaptation and flexibility when managing BPSD, and (3) building the care partner’s emotional well-being to support care. Care partners reflected on the challenges that arose from changes in behaviour in the people living with dementia, noting how these shifts sometimes influenced relationships and emotional well-being. In response, they employed adaptive strategies including modified communication, environmental adjustments, avoiding confrontation, and self-care.

Managing BPSD places a substantial emotional challenge on family care partners in Lima, Peru. Nonetheless, care partners actively develop strategies to respond to these situations. These findings contribute novel insights into dementia caregiving in underrepresented populations in Latin America and highlight the importance of understanding caregiving experiences in diverse cultural contexts.