Measuring QoL
The aim of this research is to develop a method for routinely and accurately measuring resident quality of life (QoL) for individuals with dementia in designated supportive living (DSL) and nursing home (NH) settings, and assess whether it’s feasible for care staff to collect this information in regular care.
Further, the COVID-19 pandemic has led to the implementation of public health measures in DSL and NH settings. While necessary, it is likely that these health measures had unintended consequences on residents’ QoL. In order to understand the impact of COVID-19 public health measures on resident QoL, we need to measure it! This information will improve our response to future outbreaks and take resident QoL into consideration.
Feasibility of Quality of Life Assessment/QoL-COV study
Maximizing QoL is the ultimate goal of care in DSL and NH settings. Residents with dementia are at high risk for poor QoL, however it is not currently standard practice for DSL or NH homes to regularly measure QoL. In order to improve QoL for this vulnerable population, we have to measure it. This study is an important step to routinely measure and improve resident QoL in these settings.
QoL assessments were collected virtually for 240 residents across 11 continuing care facilities (5 DSL, 6 NH) in Alberta. A total of 491 QoL assessments were completed as some residents were assessed repeatedly to account for any changes in QoL over time. Sixty-eight care staff completed the DEMQOL-CH questionnaire, a tool specifically developed for use by care providers, to assess QoL for residents they knew well. Surveys were also collected for care staff demographics and to get their perspective on the feasibility of completing the DEMQOL-CH, and measure their understanding of the tool itself.
Feedback sessions were held with participating care homes to review their resident QoL results and site-specific scores. The study team is working to further analyze focus group discussions with care teams on their perspective on whether routine collection of resident QoL data is feasible and valuable, as well as how COVID-19 public health measures may have impacted care home staff, residents, and their family/friend caregivers.
TREC AB COVID ImPACT
As part of the TREC Alberta COVID-19 Impact Assessment, 698 resident QoL assessments were collected across 9 Alberta long-term care (LTC) homes from March to June 2021. Resident QoL was assessed for individuals with mild, moderate, or severe cognitive impairment to explore the impact of COVID-19 related public health measures on resident QoL in LTC. A total of 119 care aides participated in the study, completing the DEMQOL-CH for residents they knew well. Care staff also completed demographic and feasibility surveys to assess their perception of the relevance and value of the questionnaire. Using random IDs, resident QoL data will be linked with the site’s regularly collected RAI-MDS 2.0 data for each participating resident.
Debriefings were held with participating homes to discuss the care team’s perspective on whether routine collection of resident QoL data is feasible and relevant in this environment. The study team plans to further analyze these discussions to better understand the viability of regular QoL assessments in care settings moving forward.
A feedback session took place in November 2021 with the participating care homes to review their resident QoL results and site-specific scores, as well as discuss potential strategies for improving resident QoL.
RESULTS
Care aides understood the DEMQOL-CH well and on average were able to complete the tool in less than 5 minutes per resident. Findings show the DEMQOL-CH was reliable and managers and care staff found the use of the DEMQOL-CH highly feasible, valuable, and relevant to their care practice.
Feasibility of Quality of Life Assessment/QoL-COV study
DEMQOL-CH scores can range from a low of 31 (worst possible QoL) to a high of 124 (best possible QoL). The overall QoL scores in participating homes were in the mid-ranges (87.3), with NHs having slightly higher QoL scores (90.5) than DSL facilities (83.7).
Residents were assessed repeatedly in some facilities. Overall, QoL improved over time. Nursing homes showed a slight decline in QoL between the first and second assessment, but improved between the second and third, while in DSL homes there was a substantial increase in QoL between the first and second assessment, which dropped at the third.
The first research paper on the Feasibility of routine quality of life measurement for people living with dementia in long-term care study was published in JAMDA in August 2021
Feasibility of routine quality of life assessment in long-term care homes was presented at the 2021 Annual Canadian Association for Health Services & Policy Research Conference in May 2021.
Quality of life in nursing home residents with moderate to severe dementia: Feasibility of routine measurement was presented to members of the Alberta Gerontological Nurses Association. Edmonton, Alberta, Canada, January 25, 2021
TREC AB COVID Impact
DEMQOL-CH scores can range from a low of 31 (worst possible QoL) to a high of 124 (best possible QoL). The overall QoL scores in participating homes were in the mid-to-high range (92.4).
A presentation was held on October 14, 2021 to share the preliminary QoL results with TREC homes.