In the late stages of dementia, individuals rely on others for their wellbeing and this creates an ethical imperative for responsive dementia care. Through a qualitative evidence synthesis of literature on what constitutes responsive dementia care, we identified dignity of identity as a central theme. Dignity of identity is the status each of us holds in relation to others and reflects our past experiences and our aspirations for the future. We did a qualitative evidence synthesis of 10 qualitative studies conducted with a total of 149 research participants, 95 of whom had dementia, and 54 of whom were paid and family member caregivers to people with dementia. Using “new materialism disability studies” as our theoretical framework, we illustrate how environments, both material and discursive, shape the abilities of people with dementia in residential care settings (RSCs) to live well and we use our findings to point to ways forward in dignity of identity-enhancing dementia care practice. Echoing the literature, we observe that people with dementia have the virtual capacity to live with dignity of identity and illustrate how material conditions and discourse influence the transition of dignity of identity in people with dementia from a virtual capacity to an actual capacity and how demonstrated capacity in turn influences material conditions and discourse surrounding care for people with dementia in RSCs. We call for a greater acknowledgement within literature on dignity and dementia of structural barriers to dignity of identity-enhancing care. The COVID-19 pandemic has shown us the fatal consequences of insufficient material conditions in RCSs and we hope that on a societal level there is improvement to both the material conditions in RCSs as well as an improvement in discourse about those who live and work in RCSs.
Background: Despite the high proportion of stroke patients with a pre-existing impairment, patients with disabilities are often excluded from stroke treatment trials. Trials are designed for “perfect patients”: patients who are functionally independent and thus generally younger with fewer comorbidities; ironically, such patients are less likely to experience stroke than those with premorbid disability. Exclusionary practices in trials may translate into disparities in stroke care in practice. Through a review of literature, our purpose is to illuminate how people with disabilities are treated across the care continuum following a stroke. Methods: We completed a qualitative systematized review of articles pertaining to the care of patients with premorbid disability and stroke and their outcomes. Using a critical disability studies' theoretical lens, we analyzed inequity across the stroke care continuum. Findings: Among 24 included studies, we found evidence that people with disabilities did not receive equitable access to treatment ranging from being admitted to stroke units to receiving post-stroke rehabilitation. However, observational studies suggest that stroke therapies may be beneficial in selected patients with disabilities when measures of success are framed more achievable (e.g. return to pre-stroke status). This leaves us concerned about how people with pre-existing impairments might be structurally disabled within current systems of stroke care. Conclusion: We use our critical disability studies' theoretical lens to argue that an intersectional approach to stroke treatment is much needed if we are to remedy structural inequities embedded throughout the care continuum.
Given that deaths lag cases, resident deaths are likely to continue to increase, but the rate at which they will increase is unclear, as improvements in treatment may have lowered case-fatality rates. 7 CONCLUSIONDespite gains in knowledge about best practices in nursing homes, little has changed to mitigate the risk of COVID-19 to nursing home staff and residents in virus hotspots. Sporadic policy efforts to address resources gaps have been insufficient and/or ineffective to change the trajectory.
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