An acceptance, role transition, and couple dynamics-based program for caregivers: A qualitative study of the experience of spouses of persons with young-onset dementia

Abstract

Objective In this study, we assessed a support program based on acceptance, role transition, and couple dynamics for spouses of people with young-onset dementia. The qualitative feedback from the caregivers’ experience is analyzed. The goal was to explore how this home-based support program is perceived and to appraise the impact of the different approaches that were offered. Design A thematic analysis was conducted on the answers to the end-of-session questionnaires and the follow-up semistructured interviews. Results Five themes emerged from the analyses. They highlighted caregivers’ ability to overcome their emotional struggle as well as the control of their loved one’s behaviors. The results also showed the possibility for caregivers to access new ways to support their loved ones and to maintain the quality of their relationship. Conclusion These findings represent preliminary evidence of this program’s efficacy for caregivers.

A qualitative meta-synthesis of common and unique preferences for supportive services among persons with young onset dementia and their caregivers

“…Persons with young onset dementia and caregivers both expressed interest in training to build skills related to having more open conversations about their individual experiences with young onset dementia Larochette et al, 2019;Nichols et al, 2013;. Specifically, they sought to learn strategies to more effectively express and understand each other's needs in general and in the context of young onset dementia-related communication disruptions (Larochette et al, 2019;.…”

Psychosocial treatment preferences of persons living with young-onset dementia and their partners

“…By interviewing partners together, our work provides novel skills that would benefit both partners such as coping with losses, coping with symptoms, and engaging in meaningful activities as a couple and individuals (e.g., maintain “personhood” for persons with young-onset dementia). Our findings have some overlap with Larochette et al (2019) intervention (i.e., acceptance, role transition, and couple dynamics); however, their intervention is for spouses and therefore does not account for the psychosocial needs of persons with young-onset dementia (e.g., identity changes and grieving losses). Regarding program format , couples noted that a virtual, time-limited program that begins shortly after diagnosis was acceptable.…”

“…This domain includes five themes related to couples’ preferences for psychosocial program content and skills. We inquired about specific skills that have been relevant in our prior work and within the young-onset dementia literature (Larochette et al, 2019; Vranceanu et al, 2020). We also encouraged couples to share additional coping skills that may have been helpful shortly after diagnosis.…”

“…Our interview questions were open-ended; however, we also included specific questions based on our qualitative meta-synthesis of young-onset dementia research and prior qualitative work with nurses and couples coping with acute neurological illnesses, which was used to develop Recovering Together (e.g., Bannon et al, 2020; McCurley et al, 2019; Vranceanu et al, 2020). We asked about proposed content based on skills and topics common to a number of individual and dyadic psychosocial programs for neurological illnesses, including Recovering Together (e.g., mindfulness, dialectical thinking, and effective communication) (Larochette et al, 2019; Vranceanu et al, 2020). We also included questions about the intervention format based on Recovering Together (e.g., virtual, dyadic, and short-term evidence–based program) (McCurley et al, 2019; Vranceanu et al, 2020).…”

Soledad, rumiación y estrés como precursores del bienestar subjetivo en las parejas de pacientes con cardiopatía

“…En efecto, la pareja de la persona enferma debe hacerse a la idea de que sus responsabilidades se acrecentarán al hacerse cargo de las tareas que implican atender al otro, como su posible incapacidad, el dolor o sus molestias cotidianas, así como llevar a cabo los tratamientos y demás actividades. A partir de esto, surgen sentimientos perturbadores en la pareja del paciente con cardiopatía, como fracasar en la ejecución de dichas tareas, la incertidumbre ante el futuro, la culpa (pues en ocasiones los cuidadores se comprometen tanto que no cumplir debidamente con su deber les genera tal sentimiento) y la soledad al no poder compartir con la pareja una vida "normal", lo que pone en peligro el bienestar de la pareja y la calidad de su relación (Feldberg et al, 2011;Larochette, Wawrziczny, Papo, Pasquier y Antoine, 2019).…”