Time from diagnosis to institutionalization and death in people with dementia

Abstract

Introduction Reliable estimates of time from diagnosis until institutionalization and death in people with dementia from routine nationally representative databases are lacking. Methods We selected 9230 people with dementia and 24,624 matched controls from family physicians’ electronic records linked with national administrative databases to analyze time until institutionalization and death and associated factors. Results Median time from recorded diagnosis until institutionalization and until death for people with dementia was 3.9 and 5.0 years, respectively, which was considerably shorter than for controls. Once institutionalized, median time to death was longer for persons with dementia (2.5 years) than for controls (1.2 years). Older age and receiving home care were the strongest predictors of shorter time until institutionalization and death in people with dementia. Gender, cohabitation, migration status, frailty, polypharmacy, and dementia medication were other significant factors. Discussion The estimates could help to inform patients, their families, and policymakers about probable trajectories.

Time from dementia diagnosis to nursing-home admission and death among persons with dementia: A multistate survival analysis

“…Even with frequent domestic nursing care, perhaps as much as 6 visits a day/night, persons with moderate or severe dementia might need to move to a nursing home, if or when the symptoms become too severe, or if the informal caregiver is exhausted. More than 80% of persons living in Norwegian NHs today have dementia [12], and the average length of stay for this group is reported to be 2.4 years [13], similar to figures from the Netherlands [14], where the median length of NH stay for persons with dementia was found to be 2.5 years. Figures on the general NH population in European countries show a mean length of stay of approximately 2 years [14][15][16].…”

“…Persons diagnosed in primary healthcare are typically older, less educated, and have poorer cognition and more limitations in ADL than persons diagnosed in specialist healthcare [7,9]. Unfortunately, we do not know if all the persons included in other studies were diagnosed in specialist healthcare or also in primary healthcare [14,17,18]. https://doi.org/10.1371/journal.pone.0243513.t004…”

“…In this study, where the participants had been diagnosed in specialist healthcare, no difference was found in the time to NH admission between age groups. A Dutch study found that older age was a strong predictor for shorter time to institutionalization [14]. In Norway, assessing and diagnosing persons older than 65 years with symptoms of cognitive decline is mainly a primary healthcare responsibility [8].…”

“…One explanation could be that men experience a more rapid ageing process compared to women. Previous research has demonstrated that men with dementia have a shorter survival rate compared to women [1,13,14].…”

“…Several studies on time to NH admission have been conducted, examining nursing-home placement at first follow-up [17], or admission during a 6-month period [10], including persons with Alzheimer's disease [18][19][20] or comparing different diagnostic groups, like Lewy body dementia and Alzheimer's disease [21]. A Dutch study found the median elapsed time from diagnosis to NH admission to be 3.9 years [14], and another European study found that~20% of home dwelling persons with Alzheimer's disease were institutionalized within 36 months from baseline assessment [18]. Other studies examines how various interventions effect time to admission, like use of dementia drugs [20], or informal carer-training [22].…”