Characteristics of Early Onset Dementia and Caring Experiences and Service Needs of Family Caregivers: A Mixed Methods Study

Abstract

Purpose: The purpose of this mixed methods study was to explore the caring experiences of the family caregivers of patients with early-onset dementia, and identify the characteristics of early-onset dementia.Methods: A qualitative study was conducted using Colaizzi‘s phenomenological method to explore the caring experiences and service needs of ten family caregivers. A quantitative study was carried out by secondary data analysis to compare the differences in disease characteristics and comorbidities between early and late-onset dementia.Results: The experiences of the family caregivers of patients with early-onset dementia were ‘Learning about dementia’, ‘Away from everyday life’, ‘Facing dementia’, and ‘Barely managing’. The study also revealed that one out of five dementia patients had early-onset dementia. However, most dementia services are concentrated on late-onset dementia. Thus, the family and caregivers of early-onset dementia patients experience relatively inadequate services.Conclusion: This study’s findings identified the characteristics of early-onset dementia, as well as the caring experiences and service needs of family caregivers from a more holistic perspective, and will contribute to the development of adequate nursing intervention programs and policies in the future.