Dementia is a neurocognitive syndrome with persistent intellectual and functional decline. Patients with advanced progressive dementia due to Alzheimer’s or multiple infarcts can live a long time until they finally develop complications that take their lives. They are considered close to death when they are functionally incapacitated and complicating conditions develop.
End-stage progression of dementia results in patients becoming increasingly confused and unable to care for themselves. They may eventually lose the ability to speak and walk or carry out any activity of daily living (ADLs) and become bedridden and non-responsive. Patients with dementia are at increased risk for falls, dysphagia, pressure sores, aspiration, delirium, and seizures. Some patients may become aggressive or violent, especially if frightened or severely confused.
In advanced stages, medications (such as cholinesterase inhibitors, which are used for mild to moderate dementia and NMDA antagonists, used to treat moderate to severe dementia) to control behavior or improve cognition may be of limited value. SSRIs, such as citalopram, sertraline, and duloxetine are sometimes used to treat associated depression or aggressive behavior when other strategies have been unsuccessful. Anticonvulsants, such as carbamazepine and sodium valproate, may help to control aggressive behavior, but antipsychotic drugs are generally avoided because of increased risk of death. The caregivers and clinicians should maintain a calm, quiet environment and use a friendly tone of voice to speak to the patient, even if the patient cannot respond.
Dementia Functional Assessment Staging Table (FAST):
Stage 1: No difficulty either subjectively or objectively
Stage 2: Complaining of forgetting location of objects. Subjective work difficulties
Stage 3: Decreased job functioning evident to coworkers. Difficulty in traveling to new locations. Decreased organizational capacity.
Stage 4: Decreased ability to perform complex tasks, such as planning dinner for guests, handling personal finances (such as forgetting to pay bills), difficulty marketing, etc.
Stage 5: Requires assistance in choosing proper clothing to wear for the day, season, or occasion, such as patient may wear the same clothing repeatedly unless supervised.
(A) Improperly putting on clothes without assistance or cueing (e.g., may put street clothes on over night, or put shoes on wrong feet, or have difficulty buttoning clothing) occasionally or more frequently over the past weeks.
(B) Unable to bathe properly (e.g., difficulty adjusting the bath-water temperature) occasionally or more frequently in the past weeks.
(C) Inability to handle mechanics of toileting (e.g., forgets to flush the toilet, does not wipe properly or properly dispose of toilet tissue) occasionally or more frequently over the past weeks.
(D) Urinary incontinence (occasionally or more frequently over the past weeks)
(E) Fecal incontinence (occasionally or more frequently over the past weeks)
(A) Ability to speak limited to approximately a half of dozen intelligible words or fewer, in the course of an average day or in the course of an intensive interview
(B) Speech ability is limited to the use of a single intelligible word in an average day or in the course of an intensive interview (the person may repeat the word over and over)
(C) Ambulatory ability is lost (cannot walk without personal assistance)
(D) Cannot sit up without assistance (e.g., the individual will fall over if there are not lateral rests arms on the chair.
(E) Loss the ability to smile
(F) Loss the ability to hold head up independently
Factors supporting hospice referral (This section is specific for Alzheimer’s disease and related disorders, and is not appropriate for other types, such as multi-infarct dementia. ***Note that several dementia dx codes can not be used as the primary hospice dx***):
- Patients with dementia should show all of the following characteristics:
- Stage 7 or beyond according to the FAST
- Unable to ambulate without assistance
- Unable to dress without assistance
- Unable to bathe without assistance
- Urinary and fecal incontinence, intermittent or constant
- No consistently meaningful verbal communication; stereotypical phrases only or the ability to speak is limited to 6 or fewer intelligible words
- Patients should have had one of the following within the past 12 months:
- Aspiration pneumonia
- Pyelonephritis or upper urinary tract infection
- Decubitus ulcers, multiple, stage 3-4
- Fever, recurrent after antibiotics
- Inability to maintain sufficient fluid and calorie intake with 10% weight loss during the previous 6 months or serum albumin < 2.5 gm/dl
Corridor (2006). Hospice Quickflips: A Guide for Hospice Clinicians
Yennurajalingam, S., & Bruera, E. (2016). Oxford American Handbook of Hospice and Palliative Medicine and Supportive Care (2nd. Ed.)