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.

Threats to personhood from within the family? A study of family caregivers of people with dementia in the Chinese context

“…For example, some identified the importance of maintaining a close emotional bond with people with dementia (Smebye & Kirkevold, 2013) and developing a respectful, honest, and trustful caregiving relationship (Hennelly & O'Shea, 2022). In addition, some stressed the importance of promoting personal choice and autonomy (i.e., agency) (Hennelly & O'Shea, 2022;Nowell et al, 2011), dignity (Bosco et al, 2018;Cruise & Lashewicz, 2022), and sense of self-worth (Tsai, 2009). Finally, others suggested engaging in the social and occupational roles of people with dementia (Hennelly et al, 2019) to preserve their identity (Kitwood, 1997).…”

Canadian Long-Term Residential Care Staff Recommendations for Pandemic Preparedness and Workforce Mental Health

“…This emphasis aligns with the person-centered approach in LTRC, which is defined as a standard of care that upholds the person at the center of care by integrating values of relationship, individualism, holism, respect, and empowerment (McCormack et al, 2017). The personcentered approach was developed as a response to concerns that the delivery of LTRC was overly routinized and medicalized (Banerjee, 2018) and its goals are best facilitated when people behind professional caregiving roles are allowed to emerge and make use of both professional and personal experience, skills, and stories (Cruise & Lashewicz, 2022;Lood, Kirkevold, & Edvardsson, 2022). Yet LTRC facilities remain highly structured work environments where the relational aspects of work that are key to person-centeredness can be perceived as not meeting the standard of "real work," which is bound up with instrumental values of linearity, abstraction, and rationality (Banerjee et al, 2021).…”

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“…Due to the multifaceted decline observed in individuals with major neurocognitive disorder, including affective, cognitive, behavioral, linguistic, physical, and visual aspects, they often become vulnerable to their environment. Individuals living with major neurocognitive disorder depend on those who provide care, especially in the later stages of the disease [8,9]. This dependence puts their autonomy, dignity, and integrity at risk [10,11].…”