Improving Incontinence Support for Family Caregivers and Persons Living with Dementia

PROJECT SUMMARY There is a fundamental gap in our understanding of how best to care for persons living with dementia (PLWD) and urinary incontinence (UI), many of whom are being cared for in their homes by family members with no prior caregiving experience (i.e., spouses and children). While many of these family caregivers are highly motivated and dedicated to caring for their loved ones and to preserving their dignity, many are also burdened by the stigmatized nature of UI and the associated complexities of providing such intimate care to their spouse or parent. Further, a lack support, tools, and resources necessary to provide the type of continence care required to maintain their loved one in the home is often a final deciding factor for institutionalization. Therefore, there is a critical need to better understand and support these caregivers, starting with a better understanding of their experience, challenges, and perspectives, aligned with those of the PLWD and UI, on this important problem to inform possible solutions. Our overarching research objective is to support these caregivers to more effectively care for their PLWD and UI with safety and dignity, ultimately keeping them in their home for as long as possible. The objective of the proposed study is to better understand the unique UI support needs, preferences, and priorities of family caregivers of PLWD and the PLWD in the community to lay the groundwork for potential future interventions in the home environment. The central hypothesis is that there are identifiable and actionable caregiver needs in caring for PWLD and UI in the home that can be used to develop future interventions. This study will utilize a total of 6 focus groups consisting of 3 types of family caregivers (2 with women spouses, 2 with men spouses, and 2 with daughters/sons) from both rural and urban communities to understand their UI support needs, 12 individual interviews with care dyads (caregivers, early stage PWLD) to understand their current interpersonal dynamics and future priorities for management of UI, and a participatory photography methodology of with 12 caregivers to illuminate unique opportunities for intervention for UI care in the home. This study is innovative in terms of both content (the focus on different caregiver groups for PLWD and UI) and methodology (the use of participatory photography methodology to capture novel, feasible, and acceptable areas for future innovation and intervention). The proposed research is significant because there are limited data on caregivers for PLWD with regards to in home UI care, which is an extremely common, understudied, and underserved area of research in this already vulnerable population. Findings from this study will inform a future R01 designed to create and implement an intervention to assist family caregivers of PLWD and UI to help serve them to care for their loved ones with dignity and to keep them in the home for as long as possible.