Needs in early onset dementia: A qualitative case from the NeedYD study.

Abstract

The aim was to explore the experiences of a caregiver of a patient with early onset dementia (EOD) and the needs of patient and caregiver. A single case study design was used to explore (1) unmet needs of patient and caregiver and (2) caregiver's experiences of transitions in care and health care services. A qualitative analysis was used to examine the data. This study shows that a patient with EOD and the caregiver were confronted with specific issues during the care process, namely (1) prolonged time to diagnosis, (2) a lack of fit between needs and services, (3) the strain of dedication to care versus the caregiver's own future perspective, (4) the need for response of health care services to changing individual preferences. This study illustrates specific issues related to early onset dementia that require specialized EOD care such as the differential and changing needs of patients and caregivers.