J Korean Acad Psychiatr Ment Health Nurs.  2023 Jun;32(2):101-113. 10.12934/jkpmhn.2023.32.2.101.

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

  • 1Assistant Professor, Department of Nursing, Kyungdong University, Wonju, Korea
  • 2Associate Professor, College of Nursing, The Catholic University of Korea, Seoul, Korea


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.
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.
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.
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.


Dementia; Family; Caregivers; Age of onset; Qualitative research; 치매; 가족; 돌봄제공자; 발병연령; 질적연구
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