How should clinicians discuss hospice for patients with dementia? Anticipating caregivers' preconceptions and meeting their information needs.

Abstract

This study was designed to determine whether Alzheimer disease (AD) caregivers view the benefits of hospice as more relevant to themselves or to patients, to identify the features of hospice care that are most important to caregivers, and to determine how often these features are described in hospice promotional materials. Telephone interviews were conducted with AD caregivers from a Memory Disorders Clinic of an urban academic medical center (N = 45). A nationwide mail survey of randomly selected hospices was also conducted (N = 66). Caregivers were twice as likely to say that hospice would benefit them than they were to say it would benefit the patient (26 vs. 13; p = 0.002). The features of hospice that were most important to caregivers were continued follow-up evaluation by the patient's primary care provider and hospice's emphasis on helping patients to avoid hospital admission. The least important was the availability of a chaplain. There was moderate agreement between the importance of various hospice features to caregivers, and the representation of that feature in hospice promotional materials. AD caregivers have generally positive opinions about hospice's benefits for themselves. In discussing hospice with AD caregivers, clinicians may want to emphasize selected features of hospice that are particularly important to caregivers.