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

Area of Science:

• Gerontology
• Neuroscience
• Psychology

Background:

• Spousal caregivers of individuals with young-onset dementia (YOD) often lack adequate information and preparation.
• Caregiving for YOD presents unique challenges, impacting work-life balance and personal responsibilities.
• The specific needs of spousal caregivers for YOD remain largely underexplored in existing literature.

Purpose of the Study:

• To conduct a scoping review to identify and map the lived experiences of spousal caregivers of persons with YOD.
• To determine the unmet needs of spousal caregivers caring for individuals with YOD.

Main Methods:

• A systematic literature search was performed across multiple databases including Embase, Scopus, and PubMed.
• Studies focusing on spousal caregivers of people with YOD were screened and selected based on predefined inclusion criteria.
• Data extraction and thematic categorization were employed to analyze the lived experiences and needs of this caregiver population.

Main Results:

• Five key themes emerged: psychoeducational, social, practical, emotional/psychological, and navigational support needs.
• Caregivers reported social isolation, financial strain, role conflicts, and emotional distress.
• Significant challenges were identified in accessing and coordinating healthcare services, highlighting the need for advocacy.

Conclusions:

• Spousal caregivers of individuals with YOD have extensive unmet needs across various support dimensions.
• Current support systems exhibit gaps at personal, social, and systemic levels, complicating the caregiving experience.
• Future interventions must offer accessible, comprehensive, and tailored support services to address the unique challenges faced by these caregivers.