Long-term care use among people living with dementia: a retrospective register-based study from Sweden

Abstract

Background: Although many people with dementia need progressive support during their last years of life little is known to what extent they use formal long-term care (LTC). This study investigates the use of LTC, including residential care and homecare, in the month preceding death, as well as the number of months spent in residential care, among Swedish older decedents with a dementia diagnosis, compared with those without a dementia diagnosis.

Methodology: This retrospective cohort study identified all people who died in November 2019 in Sweden aged 70 years and older (n = 6294). Dementia diagnoses were collected from the National Patient Register (before death) and the National Cause of Death Register (death certificate). The use of LTC was based on the Social Services Register and sociodemographic factors were provided by Statistics Sweden. We performed regression models (multinomial and linear logistic regression models) to examine the association between the utilization of LTC and the independent variables.

Results: Not only dementia diagnosis but also time spent with the diagnosis was crucial for the use of LTC in the month preceding death, in particular residential care. Three out of four of the decedents with dementia and one fourth of those without dementia lived in a residential care facility in the month preceding death. People who were diagnosed more recently were more likely to use homecare (e.g., diagnosis for 1 year or less: home care 29%, residential care 56%), while the predicted proportion of using residential care increased substantially for those who had lived longer with a diagnosis (e.g., diagnosis for 7 + years: home care 11%, residential care 85%). On average, people with a dementia diagnosis stayed six months longer in residential care, compared with people without a diagnosis.

Conclusions: People living with dementia use more LTC and spend longer time in residential care than those without dementia. The use of LTC is primarily influenced by the time with a dementia diagnosis. Our study suggests conducting more research to investigate differences between people living with different dementia diagnoses with co-morbidities.

Keywords: Dementia; End-of-life; Long-term care; Register data; Sweden; Use of eldercare.