Counting what counts: assessing quality of life and its social determinants among nursing home residents with dementia.

BACKGROUND: Maximizing quality of life (QoL) is a major goal of care for people with dementia in nursing homes (NHs). Social determinants are critical for residents' QoL. However, similar to the United States and other countries, most Canadian NHs routinely monitor and publicly report quality of care, but not resident QoL and its social determinants. Therefore, we lack robust, quantitative studies evaluating the association of multiple intersecting social determinants with NH residents' QoL. The goal of this study is to address this critical knowledge gap. METHODS: We will recruit a random sample of 80 NHs from 5 Canadian provinces (Alberta, British Columbia, Manitoba, Nova Scotia, Ontario). We will stratify facilities by urban/rural location, for-profit/not-for-profit ownership, and size (above/below median number of beds among urban versus rural facilities in each province). In video-based structured interviews with care staff, we will complete QoL assessments for each of ~ 4,320 residents, using the DEMQOL-CH, a validated, feasible tool for this purpose. We will also assess resident's social determinants of QoL, using items from validated Canadian population surveys. Health and quality of care data will come from routinely collected Resident Assessment Instrument - Minimum Data Set 2.0 records. Knowledge users (health system decision makers, Alzheimer Societies, NH managers, care staff, people with dementia and their family/friend caregivers) have been involved in the design of this study, and we will partner with them throughout the study. We will share and discuss study findings with knowledge users in web-based summits with embedded focus groups. This will provide much needed data on knowledge users' interpretations, usefulness and intended use of data on NH residents' QoL and its health and social determinants. DISCUSSION: This large-scale, robust, quantitative study will address a major knowledge gap by assessing QoL and multiple intersecting social determinants of QoL among NH residents with dementia. We will also generate evidence on clusters of intersecting social determinants of QoL. This study will be a prerequisite for future studies to investigate in depth the mechanisms leading to QoL inequities in LTC, longitudinal studies to identify trajectories in QoL, and robust intervention studies aiming to reduce these inequities.

Factors Associated With the Quality of Life of Nursing Home Residents During the COVID-19 Pandemic: A Cross-Sectional Study.

OBJECTIVES: Quality of life (QoL) of nursing home (NH) residents is critical, yet understudied, particularly during the COVID-19 pandemic. Our objective was to examine whether COVID-19 outbreaks, lack of access to geriatric professionals, and care aide burnout were associated with NH residents' QoL. DESIGN: Cross-sectional study (July to December 2021). SETTING AND PARTICIPANTS: We purposefully selected 9 NHs in Alberta, Canada, based on their COVID-19 exposure (no or minor/short outbreaks vs repeated or extensive outbreaks). We included data for 689 residents from 18 care units. METHODS: We used the DEMQOL-CH to assess resident QoL through video-based care aide interviews. Independent variables included a COVID-19 outbreak in the NH in the past 2 weeks (health authority records), care unit-levels of care aide burnout (9-item short-form Maslach Burnout Inventory), and resident access to geriatric professionals (validated facility survey). We ran mixed-effects regression models, adjusted for facility and care unit (validated surveys), and resident covariates (Resident Assessment Instrument-Minimum Data Set 2.0). RESULTS: Recent COVID-19 outbreaks (ß = 0.189; 95% CI: 0.058-0.320), higher proportions of emotionally exhausted care aides on a care unit (ß = 0.681; 95% CI: 0.246-1.115), and lack of access to geriatric professionals (ß = 0.216; 95% CI: 0.003-0.428) were significantly associated with poorer resident QoL. CONCLUSIONS AND IMPLICATIONS: Policies aimed at reducing infection outbreaks, better supporting staff, and increasing access to specialist providers may help to mitigate how COVID-19 has negatively affected NH resident QoL.

The impact of COVID-19 on relationships between family/friend caregivers and care staff in continuing care facilities: a qualitative descriptive analysis.

BACKGROUND: The COVID-19 pandemic and related public health measures added a new dynamic to the relationship between caregivers and care staff in congregate care settings. While both caregivers and staff play an important role in resident quality of life and care, it is common for conflict to exist between them. These issues were amplified by pandemic restrictions, impacting not only caregivers and care staff, but also residents. While research has explored the relationship between caregivers and care staff in long-term care and assisted living homes, much of the research has focused on the caregiver perspective. Our objective was to explore the impact of COVID-19-related public health measures on caregiver-staff relationships from the perspective of staff in long-term care and assisted living homes. METHODS: We conducted 9 focus groups and 2 semi-structured interviews via videoconference. RESULTS: We identified four themes related to caregiver-staff relationships: (1) pressure from caregivers, (2) caregiver-staff conflict, (3) support from caregivers, and (4) staff supporting caregivers. CONCLUSIONS: The COVID-19 pandemic disrupted long-standing relationships between caregivers and care staff, negatively impacting care staff, caregivers, and residents. However, staff also reported encouraging examples of successful collaboration and support from caregivers. Learning from these promising practices will be critical to improving preparedness for future public health crises, as well as quality of resident care and life in general.

Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care.

OBJECTIVES: Maximizing quality of life (QoL) is the ultimate goal of long-term dementia care. However, routine QoL measurement is rare in nursing home (NH) and assisted living (AL) facilities. Routine QoL measurement might lead to improvements in resident QoL. Our objective was to assess the feasibility of using DEMQOL-CH, completed by long-term care staff in video calls with researchers, to assess health-related quality of life (HrQoL) of NH and AL residents with dementia or other cognitive impairment. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: We included a convenience sample of 5 NHs and 5 AL facilities in the Canadian province of Alberta. Forty-two care staff who had worked in the facility for ≥3 months completed DEMQOL-CH assessments of 183 residents who had lived in the facility for 3 months or more and were aged ≥65 years. Sixteen residents were assessed independently by 2 care staff to assess inter-rater reliability. METHODS: We assessed HrQoL in people with dementia or other cognitive impairment using DEMQOL-CH, and assessed time to complete, inter-rater reliability, internal consistency reliability, and care staff ratings of feasibility of completing the DEMQOL-CH. RESULTS: Average time to complete DEMQOL-CH was <5 minutes. Staff characteristics were not associated with time to complete or DEMQOL-CH scores. Inter-rater reliability [0.735, 95% confidence interval (CI): 0.712-0.780] and internal consistency reliability (0.834, 95% CI: 0.779-0.864) were high. The DEMQOL-CH score varied across residents (mean = 84.8, standard deviation = 11.20, 95% CI: 83.2-86.4). Care aides and managers rated use of the DEMQOL-CH as highly feasible, acceptable, and valuable. CONCLUSIONS AND IMPLICATIONS: This study provides a proof of concept that DEMQOL-CH can be used to assess HrQoL in NH and AL residents and provides initial indications of feasibility and resources required. DEMQOL-CH may be used to support actions to improve the QoL of residents.