Background Dementia is a syndrome of acquired and progressive impairment in cognition that leads to functional decline. While there are many causes of dementia, when dementia is caused by certain progressive diseases (e.g., Alzheimer’s disease, neurovascular disease), it is irreversible and eventually fatal. This Fast Fact reviews issues of prognostication in irreversible forms of dementia.

Natural history of dementia Dementia has been classified into four functionally defined categories: mild, moderate, severe, and terminal. ‘Terminal dementia’ is defined as loss of communication, ambulation, swallowing, and continence. Others use the term “end-stage” or “advanced” making interpretation of prognostic data challenging. Many factors have been associated with shortened survival in dementia: male gender, age, diabetes mellitus, CHF, COPD, cancer, cardiac dysrhythmias, peripheral edema, aspiration, bowel incontinence, recent weight loss, dehydration, fever, pressure ulcers, seizures, shortness of breath, low oral intake, not being awake for most of the day, low Body Mass Index, and recent need for supplemental oxygen. A systematic review found that malnutrition, feeding issues, and dysphagia were the strongest associated factors with 6-month mortality in older patients with advanced dementia. Simply being admitted to the hospital with an acute illness can be associated with a poor prognosis in patients with end-stage dementia: the 6-month mortality after hospitalization for pneumonia was 53%; 55% of patients who suffered a new hip fracture died within 6 months (see Fast Fact #388).

Prognostic Systems (see table below):

I. Functional Assessment Staging (FAST), a 7-step staging system, recommended by The National Hospice and Palliative Care Organization (NHPCO) to determine hospice eligibility for patients with Alzheimer’s dementia. The FAST identifies progressive steps and sub-steps of functional decline.

• CMS guidelines state a FAST score of 7C (bowel/bladder incontinence, non-ambulatory, limited speech, complete dependence on ADLs) or worse is appropriate for hospice enrollment if the patient also exhibits at least one comorbidity or dementia-related secondary conditions:
  • Comorbidities: COPD, CHF, cancer, liver or renal disease.
  • Secondary conditions: delirium, recurrent or intractable infections (e.g., aspiration pneumonia, upper urinary tract infection, sepsis), decubitus ulcers stage 3-4, persistent fever, weight loss >10%, or serum albumin < 2.5 gm/dl.
• FAST is not appropriate for prognosis in patients with non-Alzheimer’s dementia. Beyond that, it has been critiqued for a couple reasons: a) Alzheimer’s dementia does not always progress in clearly identifiable FAST stages; b) FAST stages may not be very sensitive or specific for determining when prognosis is 6 months or less.

II. The Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria obtained from using the MDS (Minimum Data Set). It has been validated by examining data from over 11,000 newly admitted nursing home patients with dementia. 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 has only been evaluated in newly admitted nursing home residents; it is not validated in the community setting or for previously established long-term nursing home residents.

III. The Advanced Dementia Prognostic Tool (ADEPT) score is externally validated to predict mortality risk in patients with advanced dementia who live in a nursing facility. It is closely based on MRI model above and uses 12 predictors from the MDS with score range from 1.0-32.5 with higher scores indicating greater risk of death. A score of >16 suggests a 45-62% 6-month morality. It is easily accessible prognostic calculator as a free-online resource available at https://eprognosis.ucsf.edu.

Medical interventions Prognosis in terminal dementia is in part dependent on the goals of care and decisions regarding the level of interventions to treat acute complications like sepsis 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 FAST criteria adopted by NHPCO for hospice eligibility are specific for Alzheimer’s dementia and based on limited research. Other prognostic tools for dementia have not been well-validated in patients in community settings. Clinicians can best help patients by identifying broader patterns of significant cognitive and medical decline such as malnutrition, feeding difficulties, hospitalizations, and dysphagia and then engage surrogates in shared decision-making to establish goals of care and levels of medical intervention that are most consistent with current medical research and care preferences

References

1. Olson E. Dementia and Neurodegenerative Disorders. In: Morrison RS, Meier DE, eds. Geriatric Palliative Care. New York, NY: Oxford University Press; 2003.
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. Brown MA, Sampson EL, et al. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliat Med 2013; 27: 389-400.
5. Morrison RS, Siu AL.  Survival in end-stage dementia following acute illness.  JAMA. 2000; 284:47-52.
6. Schonwetter RS, Han B, Small BJ, et al. Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines.  Am J Hosp Palliat Care. 2003; 20(2):105-13.
7. 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.
8. Ramsey SU, Arnold RM. Prognostication in dementia. Handb Clin Neurol. 2022;190:163-174. doi: 10.1016/B978-0-323-85029-2.00009-9. PMID: 36055713.
9. Brown MA, Sampson EL, Jones L, Barron AM. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliat Med. 2013 May;27(5):389-400. doi: 10.1177/0269216312465649. Epub 2012 Nov 22. PMID: 23175514; PMCID: PMC3652641.
10. Smith EE, Ismail Z. Mortality Risk Models for Persons with Dementia: A Systematic Review. J Alzheimers Dis. 2021;80(1):103-111. doi: 10.3233/JAD-201364. PMID: 33492295; PMCID: PMC8075391.
11. Mitchell SL, Miller SC, Teno JM, Kiely DK, Davis RB, Shaffer ML. Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010 Nov 3;304(17):1929-35. doi: 10.1001/jama.2010.1572. PMID: 21045099; PMCID: PMC3017367.

Version History: This Fast Fact was originally edited by David E Weissman MD and published in February 2006; 2nd Edition in April 2009; 3rd Edition in July 2015 by Sean Marks MD; 4th Edition in November 2024 by Elizabeth Bukowy DO and James Deming MD.
Conflicts of Interest: None to report