The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review

Kristina M. Kokorelias*, Nirusa Nadesar, Katherine Bak, Jennifer Boger, Louise Nygård, Anna Mäki-Petäjä-Leinonen, Ann Charlotte Nedlund, Arlene Astell

*Corresponding author for this work

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Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of ‘decision-making’ was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified ‘Guidance for Researchers To Support Caregivers’. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

Original languageEnglish
JournalDementia -International Journal of Social Research
Early online date16 Apr 2024
Publication statusE-pub ahead of print - 16 Apr 2024

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