Dementia and dignity of identity: A qualitative evidence synthesis

Abstract

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.