Access to hospice programs in end-stage dementia: a national survey of hospice programs

Abstract

Objective: Because care of end-stage dementia is a significant clinical problem for which alternative modes of care are needed, this study examined the extent to which hospice programs served dementia patients.

Design: A survey of 1694 hospices with 1184 respondents (70%).

Patients: Identified patients had end-stage dementia, with no concurrent terminal illness.

Measure: The proportion of end-stage dementia patients in hospice was measured.

Results: Fewer than 1% of hospice patients had a primary diagnosis of end-stage dementia, and only 21% of the hospices served such patients. However, 7% of hospice patients had a dementia secondary to another terminal illness, and 56% of the hospices served such patients. For 80% of the hospices, the major problem in serving dementia patients was the difficulty in predicting their survival time. A higher proportion of for-profit hospices served dementia patients (42%) compared with non-profit programs (22%) or public programs (15%), P < .001.

Conclusions: A national survey of hospices revealed that few patients with primary dementia are currently treated by these programs, unless they have other terminal illnesses. An inability to predict survival was the major reason offered to explain this phenomenon. The higher percentage of patients with secondary dementia in hospice suggests that dementia per se does not make hospices care unfeasible. Similarly, the high proportion of for-profit hospices that enrolled patients whose dementia was primary implies the fiscal feasibility of providing hospice care for these patients. Further study is needed concerning the determinants of survival time in end-stage dementia.