[Young-Onset and Late-Onset Dementia Cases: A Comparison of Family Care Needs and Primary Caregiver Burden].

Abstract

Background: Young-onset dementia, defined as dementia diagnosed before the age of 65, is characterized by diverse symptoms and a high likelihood of misdiagnosis. Individuals diagnosed with young-onset dementia often face challenges such as early retirement and financial strain, leading to a significant burden for primary caregivers. Although previous studies have documented differences in caregiver burden and family care needs between patients with young-onset and late-onset dementia, few have analyzed both groups concurrently. Similar the state of international research, few studies have examined these aspects concurrently in Taiwan.

Purpose: This study was designed to compare the family care needs and caregiver burdens associated with patients with young-onset and late-onset dementia.

Methods: This cross-sectional study employed convenience sampling. The participants were categorized into young-onset (less than 65 years old) and late-onset (65 years old or older) caregiver groups. Study data were collected using a self-administered questionnaire that included a primary caregiver and patient characteristics datasheet, the Zarit Burden Interview measure, and the Assessment Tool for Family Care Needs of Dementia.

Results: One hundred and five primary caregivers of dementia patients were enrolled as participants. Total care needs, the five care-need subscales (i.e., language and communication, activities of daily living, behavioral and psychological symptoms, care stress, and obtaining resources), and caregiver burden levels were found to be significantly higher in the young-onset group than the late-onset group. Further analysis revealed significantly positive correlations between both behavioral and psychological symptoms and caregiver burden in the young-onset dementia group. Conversely, in the late-onset dementia group, caregiver burden was found to be significantly associated with language, communication, and activities of daily living. Furthermore, age in young-onset dementia patients was found to correlate significantly and negatively with caregiver burden.

Conclusions / implications for practice: Significant differences in family care needs and primary caregiver burden were found between the young-onset and late-onset dementia groups, with the former associated with greater caregiving needs and burdens. Long-term care services should be extended to patients with dementia who do not have an officially recognized disability certificate and below the age of 50. These services should be tailored to meet individual needs, equip caregivers with essential caregiving skills, and provide targeted support.