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Quality of Life - Feasibility Study

50 million people worldwide are living with dementia. Population aging is expected to more than triple numbers by 2050. Dementia encompasses multiple degenerative brain disorders that are progressive, cannot be cured, continuously diminish cognitive and functional abilities, cause neuropsychiatric symptoms, and ultimately lead to death. Yet even in the face of profound impairment, people with dementia can maintain QoL with appropriate supports in place. With no dementia cure or disease-modifying treatment available, maximizing QoL is the one thing we can do for people with dementia. Therefore, persons with dementia and agencies that advocate for them demand that maximizing QoL is a priority goal in Canada and worldwide. Before we can implement system-wide routine measurement, we have to test whether it is feasible to do so. Therefore the ultimate benefit of this study will be establishing a feasible approach to routine QoL measurement in designated supportive living (DSL) and nursing home (NH) sites. This study will be the prerequisite to actually monitoring and improving QoL in DSL and NH residents with dementia.

Funded by:

Alzheimer Society Research Program Quality of Life New Investigator grant: Grant/award #21-16

Alzheimer Society of Canada logo
Identifier/Provinces

This convergent mixed methods study uses 1) standard QoL assessments (DEMQOL-CH), 2) routinely collected clinical data from DSL and NH residents, 3) semi-structured cognitive interviews with care staff using the DEMQOL-CH, and 4) focus groups with administrators and decision makers. It is intended to be a feasibility pilot for a larger study. Our research will apply an integrated knowledge translation (iKT) approach, partnering researchers and stakeholders in a non-hierarchical way on jointly-determined priorities.

We carry out this feasibility study in DSL facilities and in NHs in Alberta. Our collaboration with senior policy makers and citizens aligns closely with Alberta’s strategic priority on quality of life in dementia and the goal of routinely assessing QoL for NH residents.

Study objectives:

1: Determine the feasibility of care staff administering the DEMQOL-CH

2: Assess quality of the DEMQOL-CH data collected by care staff in objective 1

3: Build strategies to facilitate implementation of the DEMQOL-CH in Alberta's DSL and NH facilities, in collaboration with decision makers and stakeholders

In order to achieve the first study objective 60 care staff completed the DEMQOL-CH on 400 residents between two sites, using programmed iPads. Comparison of DEMQOL-Proxy results to DEMQOL-CH results is a major validity source. Research assistants conducted cognitive interviews with each of the 20 of the 60 care providers to assess response process validity of the DEMQOL-CH and care staff-perceived feasibility of completing it. Research assistants conducted semi-structured interviews with administrators to assess feasibility from their perspectives. To avoid burden on resident care and care staff, we backfilled participating care staff with casual care staff to facilities during this project and refunded related costs.

We assessed time for care staff to complete the DEMQOL-CH (time automatically recorded for electronic surveys), patterns of missing data by resident cognition, floor/ceiling effects, tendency to the mean, lack of variance and other response patterns. Our analysis followed best practice guidelines for psychometric testing of assessment tools.

All cognitive and semi-structured interviews were audio recorded and transcribed verbatim. Our content analysis helped identify themes reflecting care staff understanding of tool items and instructions and participant perceptions of feasibility to collect DEMQOL-CH data.

For the second objective we assessed test-retest reliability, we randomly selected 80 residents (20%) from our sample of 400 residents. The same care staff member who assessed these residents with DEMQOL-CH re-assessed them within 24–48 hours. This time frame is long enough for care staff to not remember their initial ratings and short enough for resident QoL to not change substantially. To assess inter-rater reliability, we randomly selected another 8 residents (20%) from our sample. One of our 6 recruited and trained care staff other than the one who conducted the first assessment completed the DEMQOL-CH a second time within the same work shift as the first assessment.

We assessed internal consistency reliability (Cronbach’s alpha) using data on all 400 residents. This sample size exceeds the minimum for this measure. We assessed test-retest reliability by intra-class correlation with a 2-way mixed effects model of absolute agreement and inter-rater reliability by a 1-way random effects model.

In order to assess criterion validity (agreement between DEMQOL-CH and interviewer-administered DEMQOL-Proxy), we compared tools item by item with weighted Kappa statistics and sensitivity/ specificity analyses. We also compared overall scores of the 2 tools with paired t-tests. A 4-factor model was identified in previous exploratory factor analysis. In this study, we evaluated this hypothesized structure with confirmatory factor analysis. Our sample size of 400 residents was sufficient for Kappa statistics, and paired t-tests and confirmatory factor analyses. Research suggests that residents’ physical function, cognitive function, pain and depression are linked to QoL. To assess construct validity, we assessed whether QoL (measured by DEMQOL-CH) is associated with each of these clinical outcomes (measured by RAI-HC). We ran multiple regression models with QoL as the outcome variable and each clinical outcome as the predictor variable, controlling for resident characteristics (e.g. age, sex, diagnoses), care unit (e.g. unit type, staffing) and facility (e.g. size, ownership model).

To explore the third study objective we collected data for this objective at our final webinars. For this webinar, we generated a tailored report on our findings for each facility, and a summative report with findings on feasibility, barriers and facilitators of our data collection. We developed the feedback reports in collaboration with our stakeholders. In the first half of the webinar, we presented and discuss the tailored QoL reports and the summative report on recommendations and challenges for wider implementation. The second half of the summit convened focus groups to collect additional data on a) more specific experiences of participants in this project at their sites, b) tailored site reports and c) the summative report.

We audio recorded focus groups, transcribed them verbatim and conducted thematic content analysis. We then prepared a report on the focus groups for a final webinar with all available summit attendees in the last 3 months of the study. In this webinar, we presented and discussed focus group findings, received input and then generated a final set of recommendations.

Study recruitment and data collection update: 

11 facilities (5 DSL, 6 NH; 6 for-profit, 5 not-for-profit; 3 small, 2 med, 6 large);

68 care staff assessed 240 residents (491 QoL assessments (DEMQOL-CH);

110 repeated assessments; 52 inter-rater reliability assessments; 21 test-retest reliability assessments)

TREC-homes: 9 facilities (7 Edmonton, 2 Calgary; 3 for-profit, 6 not-for-profit; 2 small, 1 med, 6 large);

119 care staff assessed QoL (DEMQOL-CH) for 698 residents

Study publications:

Dymchuk, E., Mirhashemi, B., Chamberlain, S., Beeber, A., & Hoben, M. (2023). The impact of COVID-19 on relationships between family/friend caregivers and care staff in continuing care facilities: a qualitative descriptive analysis. BMC nursing22(1), 121. DOI: https://doi.org/10.1186/s12912-023-01289-7

Hoben, M., Dymchuk, E., Corbett, K., Devkota, R., Shrestha, S., Lam, J., ... & Estabrooks, C. A. (2023). Factors associated with the quality of life of nursing home residents during the COVID-19 Pandemic: A cross-sectional study. Journal of the American Medical Directors Association24(6), 876-884. DOI: https://doi.org/10.1016/j.jamda.2023.03.033

Hoben, M., Banerjee, S., Beeber, A. S., Chamberlain, S. A., Hughes, L., O'Rourke, H. M., ... & Estabrooks, C. A. (2022). Feasibility of routine quality of life measurement for people living with dementia in long-term care. Journal of the American Medical Directors Association23(7), 1221-1226. DOI: https://doi.org/10.1016/j.jamda.2021.07.018

Dr. Carole Estabrooks

Dr. Sube Banerjee

Dr. Andrea Gruneir

Dr. Hannah O'Rourke

Dr. Stephanie Chamberlain

Dr. Anna Beeber

Dr. Laura Hughes

Dr. Kelli Stajduhar

Study Coordinator:

Emily Dymchuk
Research Coordinator
University of Alberta
ECHA 5-305 | Edmonton | AB | T6G 1C9

dymchuk@ualberta.ca