UNITE: Understanding the needs and desires of primary stakeholders in long-term dementia care
The UNITE study amplifies the voices of long-term care residents with cognitive impairment in Toronto, revealing key structural and relational factors that shape their quality of life and offering insights for sector-wide improvement.
Background
The UNITE study uniquely features the voices of PWDs living in LTC in Toronto, Ontario. Semi-structured interviews with residents of Kensington Gardens, as well as loved ones of residents, and subsequent descriptive data analysis revealed aspects of care that impact the residents’ quality of life. Residents of Kensington Gardens who are living with mild to moderate cognitive impairment value meaningful engagement in activities that they enjoy, such as playing games, listening to music and going outside, as well as those which make them feel useful. Having a sense of purpose and autonomy are desired, but not always achievable in the context of LTC. This, along with the discomfort of dealing with the symptoms of their peers and/or themselves, can lead to a dissonance between their current and former or desired lives. Resultingly, residents may experience feelings of sadness, apathy, loneliness, and/or frustration. This perceptual dichotomy can currently be combatted through maintaining a daily routine, having consistent care providers, and cultivating friendships with staff and other residents. Residents appreciate receiving care from staff who can anticipate their needs and relate to them on a personal level. Ultimately, residents appreciate a LTC home that is centred on the comfort and enjoyment of its residents; is bright, clean, and offers private personal space; and which offers personalized care from staff who are not rushed. Loved ones mirrored the sentiments of residents, also identifying the importance of communication between staff and adapting supports and activities for varied levels of impairment. A synthesis of interview findings within the context of Donabedian’s framework for healthcare quality indicates whether factors that influence resident quality of life are structural or process-oriented in nature. Additionally, a comparison of study findings to the home’s most recent satisfaction survey identified priority areas that contribute to QoL not captured through the survey: (1) access to meaningful activities that make residents feel useful, (2) support in coping with group living while dealing with the cognitive decline of self and others, and (3) substantial friendships between residents and staff as well as residents. Kensington Gardens can use the findings of this study to prioritize quality improvement initiatives. The information may also be useful to other stakeholders in the sector, such as the Ministry of Long-Term Care, as they work to build LTC services that meet the needs and desires of residents and their families.
Project team
- Katherine Tucker
TRP supervisors
Project advisory committee
- Andrea Austen
- Vinita Haroun
- Lisa Cranley
See our community directory for more on committee members.