Dementia's Unique Burden: Function and Health Care in the Last 4 Years of Life

Dementia is a terminal illness marked by progressive cognitive decline. This study characterized trajectories of functional status and health care use for people with and without dementia at the end of their life.

We used the Health and Retirement Study linked with Medicare claims to generate a series of generalized linear models. Models predicted functional status and health care use for decedents with and without dementia during each month in the last 4 years of life (48 months).

People with dementia have high, sustained functional impairments during the entire last 4 years of life. People with dementia have the same predicted average activities of daily living score (1.92) at 17 months before death (95% confidence interval [CI]: 1.857, 1.989) as individuals without dementia at 6 months before death (95% CI: 1.842, 1.991). Dementia was associated with significantly less hospice during the final 3 months of life, with a 12.5% (95% CI: 11.046, 13.906) likelihood of hospice in the last month of life with dementia versus 17.3% (95% CI: 15.573, 18.982) without dementia. Dementia was also associated with less durable medical equipment (p < .001), less home health care (p < .005), and fewer office visits (p < .001). There were not significant differences in likelihood of hospitalization in the last 48 months with or without dementia.

People with dementia can functionally appear to be at end of life (EOL) for years before their death. Simultaneously, they receive less health care, particularly home health and hospice, in their last months. Models of care that target people with dementia should consider the unique and sustained burden of dementia at EOL.