Extending hospice care to end-stage dementia patients and families

Abstract

Manyfamilies ofterminally ill dementiapatients may wish to carefor their relatives at home until death occurs either because theyfeel 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 andfrustrating task that can pose a tremendous threat to the welfare andhappiness ofthe caregivers so that they eventually become secondary victims ofthe illness, and eventually seek institutional carefor their relatives.A hospice home care program provides thepractical help and emotional support that caregivers need in order to cope more effectively with the care and eventual death oftheir loved ones at home. This article describes the development and activities of the Alzheimer's Family Care Hospice, a pilotprogram sponsored by the Rush Alzheimer's Disease Center, and the Chicago area chapter oftheAlzheimer's Association. This program has provided services to a total of nine terminally ill dementia patients and theirfamilies during the past ten months. Severe dementiaAccording to the Office of Technology Assessment, an estimated 1.5 million Americans suffer from severe dementia. This number is expected to reach 2.4 million by the year 2000 unless cues or means of prevention are found for the common causes of dementia.' The highest rate of dementia is in the population over age 75, which is the age group that is increasing at the fastest rate. Even if the percentage of those affected by severe dementia remains constant, the size of the affected cohort will be immense by the turn of the century.Generalized seizures are seen in perhaps as many as 10 percent of late stage AD patients.The best estimate of the prevalence of dementia in a specific population was reported in a Finnish study which showed an incidence of 6.7 percent for the group aged 65 and over and 17.3 percent at 85 and over.2 A survey conducted in a California retirement community found a prevalence of dementia of 15.3 percent for the over 65 population and 35.8 percent for the over 80 population.3

In Reply

“…Thus, even the long‐stay hospice patients did not cause an undue financial burden to the hospice program. The existence of a small subgroup of long‐stay patients with end‐stage dementia is consistent with previous research 6,7 …”

Criteria for Enrolling Dementia Patients in Hospice

“…These goals apply to end‐ stage dementia patients, who often die of medical complications of the disease such as aspiration pneumonia. Reports of pilot hospice programs for dementia patients suggest that this approach is feasible 3–5 as well as ethical 1,6–8 . In one survey, 90% of family and professional caregivers of dementia patients viewed hospice care as appropriate for the end stages of the disease 2 .…”

Access to Hospice Programs in End‐Stage Dementia: A National Survey of Hospice Programs

“…Families also benefit from respite, assistance with their relative's physical care, and other services that are available through the Medicare hospice benefit. Reports of pilot hospice programs for dementia patients suggest that this approach is feasible, 13–15 as well as ethical 16–18 …”