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Fast Fact And Concept #150: Prognostication in Dementia

Authors: Sing Tsai MD and Robert Arnold MD

Dementia is a syndrome of acquired and persistent impairment in cognition and intellectual functioning (1). When caused by certain diseases or injury, dementia is irreversible, leading to progressive brain failure and death. This Fast Fact reviews issues of prognostication in dementia.

Natural history of dementia

Olson classifies dementia into four functionally defined categories: mild, moderate, severe and terminal; terminal being defined as loss of communication, ambulation, swallowing, and continence (1). Others use the term “end-stage” or “advanced” making interpretation of prognostic data challenging. Many prognostic factors have been associated with shortened survival: male gender, older age, diabetes mellitus, CHF, COPD, cancer, cardiac dysrhythmias, peripheral edema, aspiration, bowel incontinence, recent weight loss, dehydration, fever, pressure ulcers, seizures, shortness of breath, dysphagia, low oral intake, not being awake for most of the day, low BMI (Body Mass Index), and recent need for continuous oxygen requirement. Patients admitted to the hospital with acute illness and end-stage or terminal dementia have a particularly poor prognosis. A study of hospitalized patients with end-stage dementia demonstrated the six month mortality after hospitalization for pneumonia was 53% compared with 13% for cognitively intact patients; for patients with a new hip fracture, 55% of end-stage dementia patients died within 6 months compared with 12% for cognitively intact patients.

Prognostic Systems

The National Hospice and Palliative Care Organization (NHPCO) recommends the Functional Assessment Staging (FAST), a 7-step staging system to determine hospice eligibility. The FAST identifies progressive steps and sub-steps of functional decline. NHPCO guidelines state that a FAST stage 7A is appropriate for hospice enrollment, based on an expected six month or less prognosis, if the patient also exhibits one or more specific dementia-related co-morbidities (aspiration, upper urinary tract infection, sepsis, multiple Stage 3-4 ulcers, persistent fever, weight loss >10% within six months). Luchins studied the relationship of FAST to survival in 47 patients enrolled in hospice with advanced dementia and one or more dementia-related co-morbidities. The median survival for all patients was 6.9 months; 38% survived beyond six months. Of note, 41% of patients did not demonstrate dementia progression in a manner that allowed for assigning a FAST stage. For those patients who could be assigned a FAST stage (n = 12), and who were at stage 7C or greater, mean survival was 3.2 months. The generalizability and clinical relevance of this data are greatly compromised by this very low patient number.

The Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria obtained from using the MDS (Minimum Data Set), has been suggested as an alternative to FAST. Mitchell developed and then validated the MRI by examining data from over 11,000 newly admitted nursing home patients. Among patients with a MRI score of ≥ 12, 70% died within 6 months (mean survival time not reported). Compared to FAST Stage 7C, the MRI had greater predictive value of six month prognosis. The MRI as only been evaluated in newly admitted nursing home residents; it has yet to be validated in the community setting or for previously established long-term nursing home residents.

Medical Interventions

Estimation of prognosis in severe/terminal dementia is in part dependent on the goals of care and decisions regarding the level of intervention that will be provided to treat acute medical problems such as urosepsis and malnutrition.

Summary

Although many prognostic risk factors have been identified there is no gold standard to help clinicians determine a less than six months prognosis with any degree of certainty. The criteria adopted by NHPCO for hospice eligibility is based on very limited research and lacks important studies to determine FAST scale reliability and validity among referring physicians and hospice staff. The MRI is a promising new scale but more research is needed. Physicians can best help their patients by working with families to help them establish goals of care and levels of medical intervention that are most consistent with current medical research and family/patient preferences.

References

1. Olson E Dementia and Neurodegenerative Disorders. In Morrison RS and Meier DE (eds). Geriatric Palliative Care. Oxford, 2003. pg160-172.
2. Luchins DJ, Hanrahan P, Murphy K. Criteria for enrolling dementia patients in hospice. J Am Geriatr Soc 1997; 45:1054-1059.
3. Mitchell SL, Kiely DK, Hamel MB, et al. Estimating prognosis for nursing home residents with advanced dementia. JAMA 2004; 291:2734-2740.
4. Morrison RS, Siu AL . Survival in End-Stage Dementia Following Acute Illness. JAMA 2000; 284:47-52.
5. Schonwetter RS. Han B. Small BJ. Martin B. Tope K. Haley WE. Predictors of six-month survival among patients with dementia : an evaluation of hospice Medicare guidelines. American Journal of Hospice & Palliative Care. 20(2):105-13, 2003 Mar-Apr.
6. Wolfson C, Wolfson DB, Asgharian M, et al. A reevaluation of the duration of survival after the onset of dementia. N Engl J Med 2001; 344:1111-1116.

Fast Facts are edited by David E. Weissman, MD; Palliative Care Center, Medical College of Wisconsin. For comments/questions write to: dweissma@mail.mcw.edu. The complete set of Fast Facts are available at EPERC: www.eperc.mcw.edu

Copyright/Referencing Information: Users are free to d ownload and distribute Fast Facts for educational purposes only. Citation for referencing: von Gunten CF. Fast Fact and Concept #149 Teaching the family what to expect when the patient is dying. February, 2006. End-of-Life Physician Education Resource Center www.eperc.mcw.edu.

Disclaimer: Fast Facts provide educational information, this information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Fact information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

Purpose: Self-Study Guide, Teaching

Audience(s)

ACGME Competencies: Medical Knowledge and Patient Care

Keyword(s): Terminal Illness