What is Dementia?


Dementia is a progressive neurological condition marked by the development of multiple cognitive deficits such as:

  • aphasia (language deficits)
  • apraxia (impaired motor activity)
  • agnosia (cannot recognize/identify objects)
  • disturbances in executive function (planning and organizing).

Types of Dementia

  • Alzheimer’s disease (AD) is the most common type of dementia. It is characterized by loss of mental ability severe enough to interfere with normal activities of daily living, lasting at least six months, and not present from birth.
  • Lewy Body Dementia (LBD) is a progressive decline in cognitive ability caused by the buildup of Lewy bodies (accumulated proteins) in the brain. LBD has the same features of AD combined with three additional defining features:
    • pronounced “fluctuations” in alertness and attention, such as frequent drowsiness, lethargy, staring into space, or disorganized speech.
    • recurrent visual hallucinations.
    • Parkinsonian motor symptoms, such as rigidity and the loss of spontaneous movement.
  • Vascular Dementia or multi-infarct dementia (MID) is a common cause of memory loss in the elderly. It is caused by multiple strokes (disruption of blood flow to the brain) causing damage to brain tissue.

What is the Prognosis?

It is difficult to prognosticate when to initiate end of life care in the dementia patient. Patients with advanced dementia and multiple comorbidities have an unpredictable course in the last years of their life. Death is not a result of the disease but of a complication: hip fracture, UTI, pneumonia, sepsis; or from another comorbid condition (cardiac disease, cancer, etc).

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Palliative Care

Pharmacological and non-pharmacological interventions should focus on symptomatic relief, prevention of complications, maintaining maximum function and optimal quality of life. Symptoms dementia patients may experience at end of life include:

  • aggression/restlessness
  • delirium
  • depression
  • pain
  • constipation
  • excessive respiratory secretions

Only two classes of medication are FDA approved for pharmacological treatment of dementia.

  • Cholinesterase Inhibitors (Donepezil (Aricept), Rivastigmine (Exelon), Galantamine (Razadyne)
  • N-methyl-D-aspartate (NMDA) receptor antagonist (Memantine (Namenda)

Psychological and spiritual support is needed to assist patients and their families as these patients often experience significant care giver burden. Support groups (including online chat groups) are an excellent resource. To help patients and caregivers find a support group; contact your local Alzheimer’s Association.


Document the following signs and symptoms:

Functional Assessment Staging Tool

  • ability limited to the use of 6 intelligible words or fewer and document the words actually used
  • the Mini Mental State Examination is also a useful tool
  • shows inability to ambulate independently (requires personal, not equipment, assistance in order to walk)
  • weakness or falls that have been assessed/observed
  • requires assistance in dressing.
  • requires assistance in bathing
  • incontinence of urine and stool
  • unable to sit up or hold head up
  • difficulty swallowing food or refusal to eat
  • insufficient fluid and calorie intake to sustain life.
  • not responding to nutritional support
  • refusal of tube feedings or parenteral nutrition
  • aspiration pneumonia
  • UTI
  • sepsis
  • weight loss
  • decubitus ulcers, multiple, stage 3-4
  • fever recurrent after antibiotics
  • comorbid conditions: COPD, CHF, DM, CVA, ALS, MS, Renal Disease, Hepatic Disease, HIV Disease

Documentation Tips

Document all signs and symptoms including onset of disease and changes over time. Include information which describes impact on overall quality of life and functionality. Include information relating to psychosocial and spiritual needs and interventions.


Kinzbrunner B. Non-malignant terminal diseases: Criteria for hospice admission. Hosp Update 3: 3-6, 1993.

Shega, J.W. & Levine S. Dementia. In: Storey, C.P. ed The Hospice and Palliative Medicine Approach to Selected Chronic Illnesses: Dementia, COPD and CHF.3rd ed. pp. 9 -34, AAHPM, 2008.

Stuart B, et al. Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases. Arlington, VA, National Hospice Organization, 1996.

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