Leonard is the pseudonym of a man who was scapegoated as the source of many problems by care staff and family members of other residents on the Special Care Unit where he lived. Most residents were people with Alzheimers and Related Dementias (ADRD) but Leonard lived with frontotemporal dementia (FTD). Closer inspection revealed that the problems had a more to do with staffing issues. Too few staff resulted in burnout, whereby many regular staff were on sick leave, with temporary staff filling their shoes. These staff did not understand residents’ needs sufficiently to provide them with person-centred care. Nor did they understand how the residents’ behaviours were compromised by their dementia, be it ADRD or FTD. These gaps in understanding often led to the residents’ increased agitation, creating more work for regular staff. Because Leonard’s diagnosis and behaviour was different from most residents, he was often blamed for creating such problems. Read more in our publication.
With colleagues, I have studied the relationship between quality of life of diverse tenants living in three Assisted Living (AL) homes, especially in relation to the environmental features (physical – indoor and outdoor, organizational and social) of the homes. Two were ethnically targeted and the third was not but included ethnocultural/linguistic minorities. All dimensions of the environment, especially organizational, influence tenants’ capability to attain the attributes of quality of life, most importantly control. While many tenants accept the trade-off between increased safety and diminished control that accompanies a move into AL, more could be done to minimize that loss. Promoting relational autonomy is key. This project yielded a publication and numerous conference presentations and was followed up with knowledge translation events at each site that included newsletters in English, Chinese and Punjabi.
With colleagues, I explored perceptions of quality of care by staff and quality of life of residents of Chinese origins in long-term care homes. We interviewed both residents and their family members to find out if they had any concerns that could benefit from involvement in a Family Council (see 2020 publication) and whether or not they attended Family Council meetings. Attendance was very low, which several family members explained in terms of having no issues to raise, but their interviews suggested otherwise. In a published article we maintain that solutions must recognize that carers’ time is precious, and care-work is gendered; language incongruity and failure to address it marginalizes residents and their family members. A culturally informed reticence to speak out is reinforced when attempts to do so are silenced by Eurocentric beliefs and practices.