Counting What Counts: Assessing Quality of Life and its Social Determinants Among Long-Term Care Residents with Dementia

Quality of life (QoL) is the ultimate goal of care for people living with dementia in long-term care (LTC). Nine out of 10 LTC residents have dementia or significant memory problems - and often they have poor QoL. Social factors, such as a person's social support, race/ethnicity or financial situation are as critical for an individual's QoL as their health or functional abilities. US research suggests that there may be disparities in QoL among marginalized populations such as LTC residents who are members of visible minority communities. Although maximizing QoL and fighting health disparities in LTC are key priorities in Canada, health authorities do not regularly measure these outcomes and we lack research on these issues. This is a serious problem. If we do not measure QoL and its reasons for frail, vulnerable, and often disadvantaged people living in LTC, these issues remain invisible and so we cannot improve them. In this study, we will assess QoL of LTC residents with dementia. We will also assess important resident and facility characteristics that may influence a resident's QoL - such as a resident's health, social support, or financial situation; and a facility's size, ownership, or quality of care provided. We will include almost 4,000 residents in 78 LTC Homes in Alberta, British Columbia, Manitoba, New Brunswick, and Nova Scotia. We will feed back our findings to LTC homes, government decision makers, people in need of care and their family/friend care partners. We will meet with them to discuss possible reasons for poor QoL, reasons for differences in QoL among groups of residents (e.g. male or female gender, low income), and strategies to improve QoL and disparities in QoL for LTC residents with dementia. This study will be an important first step to prepare for intervention studies aiming to improve QoL and disparities in QoL for LTC residents with dementia.