Unmet needs and health-related quality of life in young-onset dementia

Abstract

Objectives: Young-onset dementia (YOD) causes specific challenges and issues that are likely to affect health-related quality of life (HRQOL). This study explored patient and caregiver HRQOL and its association with unmet needs in YOD.

Methods: A cross-sectional design was used to study 215 community-dwelling YOD patients and their primary caregivers. Multiple linear regression analyses were performed to determine the relationship between unmet needs assessed with the Camberwell Assessment of Need for the Elderly scale and patient and caregiver HRQOL, controlling for other variables such as demographic characteristics, patient functional status, neuropsychiatric symptoms, and caregiver sense of competence.

Results: Patient HRQOL was not associated with unmet needs. However, we found that the unmet needs of both patient and caregiver were related to several domains of caregiver HRQOL.

Conclusions: This study shows that patient and caregiver unmet needs are related to caregiver HRQOL in YOD. However, the relationship between HRQOL and unmet needs is complex. The assessment of unmet needs within the context of HRQOL seems to be an important prerequisite for personalizing care in YOD. Adjusting supportive services to match the individual needs and preferences of these young patients and their caregivers is likely to enhance their quality of life.

Keywords: Alzheimer disease; caregivers; quality of life; young-onset dementia.