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.

Caregiver Involvement and Concerns with Care of Residents of Assisted Living before and during the COVID-19 Pandemic.

INTRODUCTION: Family/friend caregivers play an essential role in promoting the physical and mental health of older adults in need of care - especially during the COVID-19 pandemic and especially in assisted living (AL) homes, where resident care needs are similarly complex as in long-term care homes but fewer staffing resources and services are available. However, little research is available on caregiver involvement and concerns with care of AL residents prior to and during waves 1 and 2 of the COVID-19 pandemic. This study addressed this important knowledge gap. METHODS: This prospective cohort study used baseline and follow-up online surveys with primary caregivers to AL residents in Western Canada who were 65 years or older and had lived in the AL home for at least 3 months before Mar 1, 2020. Surveys assessed the following outcomes in the 3 months prior to and during waves 1 and 2 of the pandemic: sociodemographics, 5 ways of visiting or communicating with residents, involvement in 16 care tasks, concerns with 9 resident physical/mental health conditions, perceived lack of resident access to 7 care services, and whether caregivers felt well informed and involved with resident care. RESULTS: Based on 386 caregiver responses, in-person visits dropped significantly in wave 1 of the pandemic and so did caregiver involvement in nearly all care tasks. While these rates increased in wave 2, most did not return to pre-pandemic levels. Correspondingly, caregiver concerns (already high before the pandemic) substantially increased in wave 1 and stayed high in wave 2. These were particularly elevated among caregivers who did not feel well informed/involved with resident care. CONCLUSIONS: Restricted in-person visiting disrupted resident care and was associated with worse perceptions of resident health and well-being. Continued caregiver involvement in resident care and communication with caregivers even during lockdowns is key to mitigating these issues.

Coping Behaviors and Health Status during the COVID-19 Pandemic among Caregivers of Assisted Living Residents in Western Canada.

OBJECTIVES: To examine the prevalence of coping behaviors during the first 2 waves of the COVID-19 pandemic among caregivers of assisted living residents and variation in these behaviors by caregiver gender and mental health. DESIGN: Cross-sectional and longitudinal survey. SETTING AND PARTICIPANTS: Family/friend caregivers of assisted living residents in Alberta and British Columbia. METHODS: A web-based survey, conducted twice (October 28, 2020 to March 31, 2021 and July 12, 2021 to September 7, 2021) on the same cohort obtained data on caregiver sociodemographic characteristics, anxiety and depressive symptoms, and coping behaviors [seeking counselling, starting a psychotropic drug (sedative, anxiolytic, antidepressant), starting or increasing alcohol, tobacco and/or cannabis consumption] during pandemic waves 1 and 2. Descriptive analyses and multivariable (modified) Poisson regression models identified caregiver correlates of each coping behavior. RESULTS: Among the 673 caregivers surveyed at baseline, most were women (77%), White (90%) and age ≥55 years (81%). Alcohol (16.5%) and psychotropic drug (13.3%) use were the most prevalent coping behaviors reported during the initial wave, followed by smoking and/or cannabis use (8.0%), and counseling (7.4%). Among the longitudinal sample (n = 386), only alcohol use showed a significantly lower prevalence during the second wave (11.7% vs 15.1%, P = .02). During both waves, coping behaviors did not vary significantly by gender, however, psychotropic drug and substance use were significantly more prevalent among caregivers with baseline anxiety and depressive symptoms, including in models adjusted for confounders [eg, anxiety: adjusted risk ratio = 3.87 (95% CI 2.50-6.00] for psychotropic use, 1.87 (1.28-2.73) for alcohol use, 2.21 (1.26-3.88) for smoking/cannabis use). CONCLUSIONS AND IMPLICATIONS: Assisted living caregivers experiencing anxiety or depressive symptoms during the pandemic were more likely to engage in drug and substance use, potentially maladaptive responses. Public health and assisted living home initiatives that identify caregiver mental health needs and provide targeted support during crises are required to mitigate declines in their health.

Caregivers' Concerns About Assisted Living Residents' Mental Health During the COVID-19 Pandemic: A Cross-Sectional Survey Study.

Family or friend caregivers' concerns about assisted living (AL) residents' mental health are reflective of poor resident and caregiver mental health. COVID-19-related visiting restrictions increased caregiver concerns, but research on these issues in AL is limited. Using web-based surveys with 673 caregivers of AL residents in Western Canada, we assessed the prevalence and correlates of moderate to severe caregiver concerns about residents' depressed mood, loneliness, and anxiety in the 3 months before and after the start of the COVID-19 pandemic. Caregiver concerns doubled after the start of the pandemic (resident depressed mood: 23%-50%, loneliness: 29%-62%, anxiety: 24%-47%). Generalized linear mixed models identified various modifiable risk factors for caregiver concerns (e.g., caregivers' perception that residents lacked access to counseling services or not feeling well informed about and involved in resident care). These modifiable factors can be targeted in efforts to prevent or mitigate caregiver concerns and resident mental health issues.

Prevalence and correlates of anxiety and depression in caregivers to assisted living residents during COVID-19: a cross-sectional study.

BACKGROUND: Family and friend caregivers play significant roles in advocating for and ensuring quality health and social care of residents in Assisted Living (AL) homes. However, little is known about how the COVID-19 pandemic and related visitor restrictions affected their health and mental well-being. We examined the prevalence and correlates of anxiety and depressive symptoms among caregivers of AL residents during the initial wave of COVID-19 in two Canadian provinces. METHODS: A cross-sectional web-based survey was conducted among family/friend caregivers of AL residents in Alberta and British Columbia (Oct 28, 2020-Mar 31, 2021) to collect data on their sociodemographic, health and caregiving characteristics, as well as concerns about residents' health and social care before and during the first wave of the pandemic. A clinically significant anxiety disorder and depressive symptoms were assessed with the GAD-7 and CES-D10 instruments, respectively. Separate multivariable (modified) Poisson regression models identified caregiver correlates of each mental health condition. RESULTS: Among the 673 caregivers completing the survey (81% for Alberta residents), most were women (77%), white (90%) and aged ≥ 55 years (81%). Clinically significant anxiety and depression were present in 28.6% and 38.8% of caregivers respectively. Both personal stressors (comorbidity level, income reduction, low social support) and caregiving stressors exacerbated by the pandemic were independently associated with caregiver anxiety and depression. The latter included increased concern about the care recipients' depression (adjusted risk ratio [adjRR] = 1.84, 95% confidence interval [CI] 1.19-2.85 for caregiver anxiety and adjRR = 1.75, 95% CI 1.26-2.44 for caregiver depressive symptoms) and reported intention to withdraw the resident from AL because of COVID-19 (adjRR = 1.24, 95%CI 0.95-1.63 for caregiver anxiety and adjRR = 1.37, 95%CI 1.13-1.67 for caregiver depressive symptoms). CONCLUSIONS: Caregivers of residents in AL homes reported significant personal and caregiving-related stressors during the initial wave of COVID-19 that were independently associated with an increased likelihood of experiencing clinically significant anxiety and depressive symptoms. Healthcare providers and AL staff should be aware of the prevalence and varied correlates of caregivers' mental health during public health crises so that appropriate screening and support may identified and implemented.

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.

Evolving partnerships: engagement methods in an established health services research team.

BACKGROUND: The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. This team includes academic researchers, trainees, research staff, citizens (persons living with dementia and family/friend caregivers of persons living in nursing homes), and decision-makers (ministries of health, health authorities, operators of nursing homes). The TREC team has experience working with health system partners but wanted to undertake activities to enhance the collaboration between the academic researchers and citizen members. The aim of this paper is to describe the TREC team members' experiences and perceptions of citizen engagement and identify necessary supports to promote meaningful engagement in health research teams. METHODS: We administered two online surveys (May 2018, July 2019) to all TREC team members (researchers, trainees, staff, decision-makers, citizens). The surveys included closed and open-ended questions guided by regional and international measures of engagement and related to respondents' experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their needs for training and other tools to support engagement. We analyzed the closed-ended responses using descriptive statistics. RESULTS: We had a 78% response rate (68/87) to the baseline survey, and 27% response rate (21/77) to the follow-up survey. At baseline, 30 (44%) of respondents reported they were currently engaged in a research project with citizen partners compared to 11(52%) in the follow-up survey. Nearly half (10(48%)) of the respondents in the follow-up reported an increase in citizen engagement over the previous year. Respondents identified many benefits to citizen engagement (unique perspectives, assistance with dissemination) and challenges (the need for specific communication skills, meeting organizing and facilitation, and financial/budget support), with little change between the two time points. Respondents reported that the amount of citizen engagement in their research (or related projects) had increased or stayed the same. CONCLUSIONS: Despite increasing recognition of the benefits of including persons with lived experience and large-scale promotion efforts, the research team still lack sufficient training and resources to engage non-academic partners. Our research identified specific areas that could be addressed to improve the engagement of citizens in health research.

Engaging non-academic research partners is becoming an expectation for Canadian health research teams. Research specifically on citizen (patient) engagement has identified benefits and challenges of partnered research; however, most research has only examined one time point. Less is known about how the perception of engagement may change with exposure to engagement in research activities. Translating Research in Elder Care (TREC) is a research program that aims to improve the quality of care and quality of life for residents, and quality of work life of staff in nursing homes. The team includes academic researchers, citizens (the term preferred by our members to reflect persons with dementia, family/friend caregivers of individuals living in nursing homes), decision-maker stakeholders (e.g., ministries of health, operators of nursing homes), trainees (Masters, PhD, postdoctoral fellows), and staff. The TREC team initiated several activities to deepen the partnerships with our citizen members. This paper describes the teams' perceptions of engagement and the benefits and challenges of citizen engagement in an established health research team. We invited the TREC team to complete an online survey (May 2018) before undertaking engagement activities (e.g., training, priority setting) and after 15 months of activities (July 2019). We asked respondents questions about their experience with citizen engagement, their perceptions of the potential research activities citizens could be engaged in, and the benefits and challenges of citizen engagement. Research team respondents reported an increase in citizen engagement in their research but that needs for support persisted. We identify specific areas where research teams need more training and support to ensure that engaged research is possible and sustainable.

Citizen and stakeholder led priority setting for long-term care research: identifying research priorities within the Translating Research in Elder Care (TREC) Program.

BACKGROUND: The Translating Research in Elder Care (TREC) program is a longitudinal partnered program of research in Western Canada that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in long-term care settings. This program of research includes researchers, citizens (persons living with dementia and caregivers of persons living in long-term care), and stakeholders (representatives from provincial and regional health authorities, owner-operators of long-term care homes). The aim of this paper is to describe how we used priority setting methods with citizens and stakeholders to identify ten priorities for research using the TREC data. METHODS: We adapted the James Lind Alliance Priority Setting Partnership method to ensure our citizens and stakeholders could identify priorities within the existing TREC data. We administered an online survey to our citizen and stakeholder partners. An in-person priority setting workshop was held in March 2019 in Alberta, Canada to establish consensus on ten research priorities. The in-person workshop used a nominal group technique and involved two rounds of small group prioritization and one final full group ranking. RESULTS: We received 72 online survey respondents and 19 persons (citizens, stakeholders) attended the in-person priority setting workshop. The workshop resulted in an unranked list of their ten research priorities for the TREC program. These priorities encompassed a range of non-clinical topics, including: influence of staffing (ratios, type of care provider) on residents and staff work life, influence of the work environment on resident outcomes, and the impact of quality improvement activities on residents and staff. CONCLUSIONS: This modified priority setting approach provided citizens and stakeholders with an opportunity to identify their own research priorities within the TREC program, without the external pressures of researchers. These priorities will inform the secondary analyses of the TREC data and the development of new projects. This modified priority setting may be a useful approach for research teams trying to engage their non-academic partners and to identify areas for future research.