Document Type


Degree Name

Master of Kinesiology (MKin)


Kinesiology and Physical Education


Faculty of Science

First Advisor

Dr. Paula C. Fletcher

Advisor Role




Objective: Informal CGs for individuals with dementia experience an increased risk of compromised health. However, CGs of individuals with young-onset dementia (CGs-YOD) are more likely to have longer caregiving durations, less social support, and heavier caregiver burdens than those caring for people with LOD (Arai et al., 2007). Further, there are limited resources available to CGs-YOD, increasing their likelihood of negative health outcomes associated with CGs roles. This qualitative study investigated the experiences of female informal CGs-YOD specifically examining the effect of providing informal care on CGs overall health and well-being.

Methods: The theoretical orientation used to guide the research was interpretive phenomenology in order to ensure an accurate representation of the lived experiences of female informal CGs-YOD was provided. Background questionnaires were administered, followed by one-on-one semi-structured interviews, and follow up interviews. Subsequently interviews were transcribed verbatim. Field notes, member checks, and triangulation were used to enhance the credibility of the study.

Results: From the analysis three themes emerged: (1) “Are we essential?”, (2) “I don’t wish this life for anybody”, and (3) “I don’t belong here”. All participants emphasized the life altering nature of their caregiving roles and the importance of advocating and spreading awareness to help fight the stigma associated with YOD.

Conclusions: Overall, this study provides knowledge on the lived experiences of female informal CGs within the Canadian healthcare system and the challenges and barriers associated with providing informal care for individuals with YOD. Their stories can provide comfort for other individuals currently providing care for loved ones with YOD.

Convocation Year


Convocation Season


Available for download on Saturday, August 03, 2024