Fragmentation of Care in the Last Year of Life: Does Dementia Status Matter?

Background Care at the end of life is commonly fragmented; however, little is known about commonly used measures of fragmentation of care in the last year of life (LYOL). We sought to understand differences in fragmentation of care by dementia status among seriously ill older adults in the LYOL. Methods We analyzed data from adults >= 65 years in the National Health and Aging Trends Study who died and had linked 2011-2017 Medicare fee-for-service claims for >= 12 months before death. We categorized older adults as having serious illness due to dementia (hereafter dementia), non-dementia serious illness or no serious illness. For outpatient fragmentation, we calculated the Bice-Boxerman continuity of care index (COC), which measures care concentration, and the known provider of care index (KPC), which measures the proportion of clinicians who were previously seen. For acute care fragmentation, we divided the number of hospitals and emergency departments visited by the total number of visits. We built separate multivariable quantile regression models for each measure of fragmentation. Results Of 1793 older adults, 42% had dementia, 53% non-dementia serious illness and 5% neither. Older adults with dementia had fewer hospitalizations than older adults with non-dementia serious illness but more than older adults without serious illness (mean 1.9 vs 2.3 vs 1, p = 0.002). In adjusted models, compared to older adults with non-dementia serious illness, those with dementia had significantly less fragmented care across all quantiles of COC (range 0.016-0.110) but a lower predicted 90th percentile of KPC, meaning more older adults with dementia had extremely fragmented care on the KPC measure. There was no significant difference in acute care fragmentation. Conclusions In the LYOL, older adults with dementia have fewer healthcare encounters and less fragmentation of care by the COC index than older adults with non-dementia serious illness.