End-of-life care of people with dementia in Latin America: A qualitative analysis.

BACKGROUND

People with dementia experience a gradual decline in cognitive and physical functioning, which makes the organization of end-of-life care in the right place challenging for them, their caregivers, and healthcare providers.

OBJECTIVES

This study aims to understand the challenges of organizing end-of-life care for people with dementia in Latin America.

DESIGN

The study used a qualitative design.

METHODS

Two focus groups, one individual interview, and one dyadic interview were conducted with 15 stakeholders from 12 Latin American countries: Argentina, Brazil, Chile, Colombia, Costa Rica, Ecuador, El Salvador, Guatemala, Mexico, Paraguay, Peru, and Uruguay. Thematic analysis was used to identify patterns within the data.

RESULTS

Although there were differences between and within the countries, end-of-life care was often affected by the socioeconomic contexts, which represent barriers for access to healthcare services; under-tapped informal caregivers' potential; societal norms and cultural expectations around care and informal caregiving; the dementia-trajectory itself; and an inadequate assurance of policies, skilled workforce, and services.

CONCLUSION

In Latin America, end-of-life care for people with dementia has many challenges for those directly affected, caregivers, and the wider healthcare system. Routes to improvement are needed to ensure that all people with dementia and their families can navigate the end-of-life process with adequate and equitable support.