This section is meant to assist in determining whether a patient with end-stage dementia is appropriate for hospice care. Although dementia shortens life independent of culture or ethnicity, prediction of six-month mortality is challenging. Severity of dementia alone correlates with poor survival in studies of institutionalized and outpatients, but patients with very advanced dementia can survive for long periods with meticulous care as long as they do not develop lethal complications. Death usually occurs, in fact, as a result of co-morbid conditions.
The term "dementia" refers here to chronic, primary and progressive cognitive impairment of either the Alzheimer or multi-infarct type. Although most research on prognosis in dementia is done with Alzheimer's patients, the vascular (multi-infarct) dementias appear to progress to death more quickly.
These guidelines do not refer to acute, potentially reversible or secondary dementias, i.e., those due to drug intoxication, cancer, AIDS, major stroke, or heart, renal or liver failure.
I. Functional Assessment Staging
. Even severely demented patients may have a prognosis of up to two years. Survival time depends on variables such as the incidence of co-morbidities and the comprehensiveness of care.
. The patient should be at or beyond Stage 7 of the Functional Assessment Staging Scale. The factors listed below should be understood explicitly, since many patients do not progress in an orderly fashion through the sub-stages of Stage 7.
. The patient should show all of the following characteristics:
. Unable to ambulate without assistance - this is a critical factor: recent data indicate that patients who retain the ability to ambulate independently do not tend to die within six months, even if all other criteria for advance dementia are present.
. Unable to dress without assistance.
. Unable to bathe properly.
. Urinary and fecal incontinence (a) occasionally or more frequently, over the past weeks, (b) reported by knowledgeable informant or caregiver.
. Unable to speak or communicate meaningfully - ability to speak is limited to approximately a half dozen or fewer intelligible and different words, in the course of an average day or in the course of an intensive interview.
II. Presence of medical complications
. The presence of medical comorbid conditions of sufficient severity to warrant medical treatment, documented within the past year, whether or not the decision was made to treat the condition, decrease survival in advanced dementia.
. Co-morbid conditions associated with dementia:
. Aspiration pneumonia.
. Pyelonephritis or other upper urinary tract infection.
. Decubitus ulcers, multiple, stage 3-4.
. Fever recurrent after antibiotics
. Difficulty swallowing food or refusal to eat, sufficiently severe that patient cannot maintain sufficient fluid and calorie intake to sustain life, with patient or surrogate refusing tube feedings or parenteral nutrition.
Patients who are receiving tube feedings must have documented impaired nutritional status as indicated by (a) unintentional, progressive weight loss of greater than 10% over the prior six months, (b) serum albumin less than 2.5 gm/dl may be a helpful prognostic indicator, but should not be used by itself.
Adapted from U.S. Department of Health and Human Services. Assistant Secretary for Planning and Evaluation. Important questions for hospice in the next century. Internet. Accessed on April 29, 2010.