UCLA

Dementia, once assumed to be only a disorder of the very old, is increasingly diagnosed in individuals under age 65. Those with early-onset dementias (EOD) present unique challenges to both individual families and society. The presence of this illness initiates an unexpected and unplanned caregiving situation for families; in EOD it is primarily the spouses who assume the bulk of the caregiver responsibilities. EOD caregivers may face distinct factors that shape their caregiving experience. Moreover, it is a relatively unstudied situation and little is known of its impact on the emotional status of caregivers.

This caregiver study used a qualitative grounded theory approach. It reports on 29 spousal caregivers and their corresponding care-recipient. The study was conducted as part of a parent study that compared care-recipients afflicted with two predominant EOD subtypes: behavioral variant Frontotemporal dementia (bvFTD), which displayed primarily behavioral and social disturbances, and early-onset Alzheimer's disease (EOAD) with cognitive decline.

Employing thematic analysis, it describes the caregiver perspective of the illness trajectory. Emerging themes include "the illness process," the "care-recipient's symptomology," and the actions involved in EOD caregiving. The emerging categories include "caregiver illness-related tasks," "non-caregiving-related tasks," and "emotional reaction to tasks." It also found temporality issues specific to EOD caregiving such as "life-course stage" and "off-time" themes. It proposes an EOD caregiver trajectory. Lastly, it presents two major grief-related categories―anticipatory and concurrent grief―and proposes an EOD grief model. It also describes the care-recipients' disease and caregivers' emotional outcomes utilizing demographic and survey data.

This study provides a glimpse of these caregivers' lived experience. It places the caregiving tasks and the illness within the context of their everyday realities. Additionally, it exposes the emotion underlying their caregiving experience as well as the lack of resources available to them. The knowledge of the underpinnings of EOD caregiving presented in this study will both increase awareness and help focus service provision and policies within the EOD dementia caregiving. This study finds that EOD caregivers are individuals that traverse this part of their life with an enormous and complex burden—they are truly besieged individuals.