Study finds people with dementia receive less health care in their final months than people without the disease

Models of care should consider the unique and sustained burden of dementia, authors say

RESEARCH TRIANGLE PARK, N.C. — A new study by researchers at RTI International, a nonprofit research institute, has found that people with dementia receive less of certain kinds of health care, particularly home health and hospice, in their final months. This is despite the fact that people with dementia functionally appear similar to those with other terminal illnesses for years prior to their death.

Dementia was associated with significantly less hospice during the final three months of life, with a 12.5% likelihood of hospice in the last month of life with dementia versus 17.3% without dementia, the study found.

“Dementia is unique because of the long course of illness, which can complicate end-of-life care for people with dementia,” said Ila Hughes Broyles, Ph.D., a health services researcher at RTI and lead author of the study. “Our study shows that current health care models for the disease are not always equipped for the sustained burdens of dementia, resulting in inadequate end-of-life care, or even none at all.”

According to the study, people with dementia appear to have the same predicted average activities of daily living (ADL) score at 17 months before death as people without dementia at six months before death. The finding suggests that people with dementia may receive less home-based care because it is more difficult to identify when they are within six months of death, a requirement to receive hospice care at  end-of-life.

The research team used the Health and Retirement Study (HRS) linked with Medicare claims to generate a series of generalized linear models. The models predicted functional status and health care use for decedents with and without dementia during their final four years of life.

The study builds on RTI’s expertise in developing, implementing and evaluating integrated care models for individuals with complex health care needs and comes amid projections that dementia cases will double to 14 million by 2060.

Funding for the study was provided by the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation.

Read the full study