Navigating the Transitions: The Experience of Spousal-Caregivers of a Person Living With Early-Onset Dementia
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Abstract
Introduction: People living with early-onset dementia (EOD) experience many difficulties in their work, personal, family and spousal lives, and it often takes many years to obtain the diagnosis. During this waiting period, few appropriate services are available. Studies have described the changes that this situation causes for spousal-caregivers, but few studies have focused on the transitions that occur on their journey.
Objective: To explore the perceptions of spousal-caregivers of persons living with EOD diagnosed for more than 2 years, the conditions that impact their transition success, and their response patterns.
Method: Based on Meleis et al.'s (2000) theory of transitions, this pilot study used semi-structured interviews conducted with 3 spousal-caregivers. The verbatim of the transcribed interviews were analyzed using the method proposed by Paillé and Mucchielli (2021).
Results: The themes that emerged from the analysis are: 1) a long caregiving journey with multiple transitions; 2) personal and community conditions that influence the success of multiple transitions and 3) a variety of strategies for coping with the spousal caregiving role.
Discussion and conclusion: The results of this pilot study provide a better understanding of the realities of some spousal-caregivers. They can inspire subsequent studies by using a larger sample size and integrating, for example, mixed methods, to delve deeper into the lived experience of these caregivers. They can also offer some avenues for healthcare professionals in assessing their needs and suggest the importance of developing interventions and services to facilitate their various transitions.
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