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.
The graying of America will lead to an unprecedented and overwhelming number of people with dementia. Every 70 seconds, someone in the United States develops a form of dementia known as Alzheimer’s dementia. Adults 85 years or older are the fastest-growing segment of many populations worldwide, and approximately one of every two of these adults have Alzheimer’s dementia. Moreover, it is estimated that one in eight people 65 years or older has Alzheimer’s dementia, and as of January 1, 2011, as many as 10,000 baby boomers will turn 65 years old every day (Gallagher, 2011).
Dementia is currently no cure or method to effectively halt or reverse the progressive neurodegenerative damage that results in severe loss of cognition, function, and eventually death. 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 the 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
The most important goal of care commonly identified by an overwhelming majority of healthcare proxies for patients with advanced dementia in the nursing home is comfort. Although established goals of care should guide treatment choices for all patients, it is frequently difficult for caregivers to confidently anticipate and fulfill the needs of persons who are unable to verbally convey their experiences because of impaired cognition and communication.
- Buckwalter Progressively Lowered Stress Threshold model: proposing that progressive neurodegenerative changes in dementia lead to decreased abilities in those affected by the disease to effectively decipher and respond to both internal and external stimuli. Therefore, as disease progresses, the person becomes increasingly vulnerable to stressors, which may trigger discomfort and negative behaviors due to increasing difficulty in their ability to process, adjust to, tolerate, or cope with stimuli. Buckwalter identified 6 types of triggers: fatigue, change, repose to perception of losses, inappropriate stimulus levels, excessive demands, and physical stressors such as pain, infection, and medications causing delirium. Buckwalter Progressively Lowered Stress Threshold model highlights that behaviors have meaning. The disturbing behaviors serve as an effective means of communication with the underlying cause for the person with dementia.
- The Consequence of Need-driven, Dementia-Compromised Behavior theory suggests that the person with dementia is unable to make his/her needs known, and the caregiver is unable to determine what the behavior mean. When needs are unmet, behaviors emerge, creating a cascading effect for the person with dementia whereby background and proximal factors affect the person’s primary needs. When these needs are not met, primary need-driven dementia-compromised behaviors emerge. Unmet primary needs may lead to secondary needs, and secondary need-driven dementia compromised behaviors. Thus, the cycle continues until the needs are assessed and addressed. It is important for caregivers to frequently anticipate even the simplest of unmet needs in the person with dementia, such as thirst, hunger, feeling hot or cold, and fatigue. People with advanced dementia are no longer identify or verbally tell caregivers the source of their discomfort or pain, thus, caregivers must anticipate the person’s physical, spiritual, and or affective needs and provide nonpharmacological and pharmacological interventions with continual assessment and reevaluation of the person’s response to treatment.
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
Gallagher, M., & Long, C. O. (2011). Advanced Dementia Care – Demystifying Behaviors, Addressing Pain, and Maximizing Comfort.
Yennurajalingam, S., & Bruera, E. (2016). Oxford American Handbook of Hospice and Palliative Medicine and Supportive Care (2nd. Ed.)