Extending hospice care to end-stage dementia patients and families

Abstract

Many families of terminally ill dementia patients may wish to care for their relatives at home until death occurs-either because they feel strongly that home is the most appropriate setting or in response to a past promise. Until recently, this had been difficult to accomplish because caring for patients with dementia is a demanding, time-consuming and frustrating task that can pose a tremendous threat to the welfare and happiness of the caregivers so that they eventually become secondary victims of the illness, and eventually seek institutional care for their relatives. A hospice home care program provides the practical help and emotional support that caregivers need in order to cope more effectively with the care and eventual death of their loved ones at home. This article describes the development and activities of the Alzheimer's Family Care Hospice, a pilot program sponsored by the Rush Alzheimer's Disease Center, and the Chicago area chapter of the Alzheimer's Association. This program has provided services to a total of nine terminally ill dementia patients and their families during the past ten months.