Abstract
Caregivers caring for loved ones with dementia need to use support systems to decrease known caregiver burdens. This research study focused on the barriers unpaid caregivers encounter when accessing support for their loved ones with dementia.
Primary Author and Speaker: Bridget Scheidler
Additional Authors and Speakers: Jose R. Rafols, Teresa Fair-Field
According to the Alzheimer’s Association (2023), there are over 11 million familial caregivers supporting a family member with dementia. Caring for a person with dementia results in fluctuating levels of distress, impacted by the type of dementia, situational events, and time spent in the caregiving role (Svendsboe, 2018). Existing support systems can ameliorate the negative impact of caregiving, but barriers to access may actually increase the burden of care, an issue that is gaining visibility. Taylor & Quesnel-Vallee (2017) highlighted the need for additional research on the structural burden of caring for an individual with dementia, calling for innovative techniques to support caregivers and a decrease in the burden of accessing such support. This study expanded on this need by exploring the barriers that caregivers of loved ones with dementia experience when accessing the support systems. The study used a phenomenological qualitative design and was implemented over two virtual focus groups with unpaid adult caregivers caring for a loved one with dementia currently, or within the past two years. Responses to the open-ended, validated interview questions were analyzed using open-coding thematic analysis to identify themes that emerged from the data. After data triangulation, the themes that developed were, (a) challenges navigating systems, (b) limitations of existing supports, (c) transition to higher levels of care, and (d) financial stress/strain. These four themes that describe the barriers that caregivers face in accessing care also resulted in increasing the emotional and physical toll of caregiving with the participants. The identified themes illustrate the complex nature of the caregiving experience and its substantial impact on the caregivers’ well-being. These findings point to the urgent need for more accessible, comprehensive support mechanisms that address both structural and situational obstacles, an area that OTs have a a role in designing.
Alzheimer’s Association. (2023). Alzheimer’s disease facts and figures. Alzheimer’s Association.org. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
Svendsboe, E.J. (2018). Patterns of carer distress over time in mild dementia. International Journal of Geriatric Psychiatry, 33(7), 987–993. https://doi.org/10.1002/gps.4882
Taylor, M. G., & Quesnel-Vallee, A. (2017). The structural burden of caregiving: Shared challenges in the United States and Canada. The Gerontologist, 57(1), 19–25. https://doi.org/10.1093/geront/gnw102