Palliative care for patients with dementia: a national survey.
OBJECTIVE
To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC.


METHODS
Telephone and Web-based surveys.


METHODS
U.S. hospice and PC programs from the National Hospice and Palliative Care Organization's program list.


METHODS
Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC.


METHODS
A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC.


RESULTS
Ninety-four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end-of-life care.


CONCLUSIONS
Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.
Indiana University Center for Aging Research, Indianapolis, Indiana, USA. atorke@iupui.edu
Alexia M
AM
Torke
Laura R
LR
Holtz
Siu
S
Hui
Peter
P
Castelluccio
Stephen
S
Connor
Matthew A
MA
Eaton
Greg A
GA
Sachs
D000368:Aged; D003625:Data Collection; D003704:Dementia / Q000628:therapy*; D006297:Health Services Accessibility; D017051:Hospice Care; D006801:Humans; D010166:Palliative Care; D014481:United States