Abstract

Objective: The median survival following the onset of dementia among adults over the age of 65 is 3.3 years; yet, we have a limited understanding of their health care use towards the end of life. The frequency of care transitions in the months leading to death is often considered a measure of care quality, and repeated hospitalizations can have a negative impact on the quality of life for patients with dementia and their caregivers. Information on the health care need and utilization among older adults with dementia is essential to health system planning – in light of our aging population – and will have an important role in clinical discussions at the individual level.

Data and methods: Using population-level health administrative data from Ontario, Canada, we examined the health care use among decedents with and without dementia (n = 263,990) in the 12 months prior to death. Our decedent cohort was stratified by the primary care setting at 1 year prior to death – i.e., whether the patient was living in a nursing home or in the community (with and without extended home care). Outcomes examined include hospitalization days, number of emergency department visits, and total health care cost in the 30, 90 and 360 days prior to death.

Results: Nearly 70-percent of decedents with dementia received care in a nursing home in their last year of life, while only 7-percent of those without dementia had been admitted into nursing homes. 21-percent of decedents with dementia in the community received extended home care in their last year of life, and the remaining 11-percent did not receive any extended health care from nursing homes or the home care setting. We observed that care in nursing homes had an impact on the number of hospitalization days; specifically, residents in nursing homes spent between 12.5 and 26.7 fewer days in hospitals, after adjusting for age, sex, rural residence, neighbourhood income quintile, and chronic health conditions. Overall, nursing home residents had comparable health care spending ($61,556 CAD) as those residing in the community ($52,236-$72,323 CAD) in their last year of life.

Policy implications: The results of this study suggest that older adults with dementia who live in the community may be at an elevated risk of frequent hospitalizations, especially towards the end of life. Specifically, they will spend two to four more weeks in the hospital than those who received care in a nursing home. Health care planning for older adults with dementia should include a discussion of these risks, and consider the impact of frequent hospitalizations on the patient’s quality of life.