Navigating Everyday as Partners to Persons With Early Dementia: A Scoping Review

Caregivers often lack access to comprehensive information on young-onset dementia (YOD), leaving them unprepared for their caregiving roles. Especially, spousal caregivers of people with (YOD) face challenges, balancing caregiving with work and personal responsibilities in everyday life. However, their specific needs remain underexplored.

This scoping review aimed to identify and map the lived experiences and unmet needs of spousal caregivers of persons with YOD.

A systematic literature search was conducted across several databases (Embase, Scopus, Academic Search Premier, APA PsycInfo, CINAHL Ultimate, and PubMed via EBSCOhost), including MEDLINE to identify studies on spousal caregivers of people with YOD. Articles were screened and selected based on inclusion criteria, and key data were extracted and categorised into themes that captured the lived experiences and unmet needs of this caregiver population.

The review identified five overarching themes related to the needs of spousal caregivers of people with YOD: psychoeducational, social support, practical support, emotional and psychological support, and navigational support needs. Caregivers often lack access to comprehensive information on YOD, leaving them unprepared for their caregiving roles. Social isolation, financial burdens, and role conflicts were common experiences. Emotional distress, identity loss, and lack of recognition for caregiving efforts contributed to psychological strain. Moreover, caregivers encountered significant challenges in accessing and coordinating healthcare services, often having to advocate for appropriate support. The need for tailored services, respite care, financial and legal guidance, and professional counselling was strongly emphasised.

This scoping review identified a wide range of unmet needs among spousal caregivers of persons with YOD, underscoring the need for psychoeducational, social, practical, emotional, and navigational support. The findings revealed gaps in current support systems across personal, social, and systemic levels, emphasising the complex and disruptive nature of the caregiving experience. Future interventions should prioritise accessible, comprehensive, and tailored support services to effectively address these unique caregiving challenges.