The Brazilian version of the Johns Hopkins dementia care needs assessment (JHDCNA-br 2.0): translation, cultural adaptation, and preliminary psychometric testing.

Abstract

Objectives: People with dementia have several unmet needs during the syndrome progression. More unmet needs are related to hospitalizations, injuries, and death. Little is known about the care needs for people living with dementia in Brazil. This study aims to translate and adapt the Johns Hopkins Dementia Care Needs Assessment (JHDCNA 2.0), a tool design to identify the dementia-related needs of people with dementia and their caregivers, to Brazilian Portuguese, and to verify psychometric properties.

Method: JHDCNA 2.0 underwent a translation, back-translation, and cultural adaptation. Preliminary psychometric testing of the Brazilian version (JHDCNA-Br 2.0) included pilot testing and experts' assessment, analyses of reliability, evidence based on test content and relations to other variables. We conducted 140 in-home interviews to assess several sociodemographic and health aspects and to be able to complete the JHDCNA-Br 2.0.

Results: The JHDCNA-Br 2.0 is reliable and has evidence based on test content and on relations to other variables for people living with dementia and caregivers. Preliminary results suggest high prevalence of unmet needs.

Conclusion: JHDCNA-Br 2.0 is a reliable and valid tool. The availability of this tool brings new opportunities to the study of dementia care, taking into consideration cultural aspects and may help inform future approaches to dementia care delivery to support persons and families affected by these conditions.