Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers

Abstract

Older adults living with dementia are at risk for more complex health care transitions than individuals without this condition, non-impaired individuals. Poor quality care transitions have resulted in a growing body of qualitative empirical literature that to date has not been synthesized. We conducted a systematic literature review by applying a meta-ethnography approach to answer the following question: How do older adults with dementia and/or their caregivers experience and perceive healthcare transition: Screening resulted in a total of 18 studies that met inclusion criteria. Our analysis revealed the following three categories associated with the health care transition: (1) Feelings associated with the healthcare transition; (2) processes associated with the healthcare transition; and (3) evaluating the quality of care associated with the health care transition. Each category is represented by several themes that together illustrate an interconnected and layered experience. The health care transition, often triggered by caregivers reaching a “tipping point,” is manifested by a variety of feelings, while simultaneously caregivers report managing abrupt transition plans and maintaining vigilance over care being provided to their family member. Future practice and research opportunities should be more inclusive of persons with dementia and should establish ways of better supporting caregivers through needs assessments, addressing feelings of grief, ongoing communication with the care team, and integrating more personalized knowledge at points of transition.

Emergency Department Care Transitions for Patients With Cognitive Impairment: A Scoping Review

“…Available reviews including cognitively impaired older adults and their care partners have focused on qualitative studies addressing care transitions from home-to-institutional settings or more broadly across the health system. 47,48 Our review also has important implications for clinical practice, policy, and research given the increasing prevalence of cognitive impairment among ED patients. 6,7 Clinically, processes associated with ED-to-community care transitions are often associated with poor care coordination and ineffective communication, particularly for older adults with cognitive impairment.…”

Fear of Incompetence in Family Caregivers and Dementia Care Transitions

“…Higher severity of dementia symptoms (Raggi et al, 2015; Schulz et al, 2004; Spitznagel et al, 2006; Yaffe et al, 2002) and more ADL impairments (Buhr et al, 2006; Couture et al, 2020; Mittelman et al, 1993; Raggi et al, 2015) predict care relocation. As dementia symptoms progress, they create increased burden in caregivers (Savundranayagam et al, 2010) and fear/anxiety in interactions with family members with dementia (Eggenberger et al, 2013; see Sörensen et al, 2006, for a review). Feelings of burden are defined as “the caregiver's emotional evaluation of the caregiving situation, which is expressed as the extent to which the caregiver finds it difficult to care for the partner” (Swinkles et al, 2019, p. 2).…”

“…The wear-and-tear process model of caregiving predicts an increase in burden due to a stronger impact of stressors and lower impact of resources over time in partner caregivers (Swinkles et al, 2019). These feelings of burden, in turn, predict care placement decisions and outcomes (Gallagher et al, 2011; Gaugler et al, 2009; Savundranayagam et al, 2010; Yaffe et al, 2002).…”

Older adults and family caregivers’ experience of digital health technology in frailty care: A systematic review and meta-ethnography protocol

“…Meta-ethnography was chosen for its ability to explore existing qualitative data and formulate comprehensive interpretations or theoretical frameworks using existing evidence. Meta-ethnography has been previously used in healthcare settings to examine care transitions of older people and their caregivers 41 , physical activity in older age 42 . More specifically, meta-ethnography has previously employed to understand the experiences of older adults’ using digital health to engage in physical activity 43 and while receiving care for chronic obstructive pulmonary disease 44 .…”