Discussing terminal diagnosis of dementia

Published 7:30 am Saturday, June 24, 2023

Today we will start a two-part series on the terminal diagnosis of dementia. Though there are several types of dementia, one type that many are familiar with is Alzheimer’s Disease. This article will focus on tips for those caring for patients with dementia, such as Alzheimer’s, and when a loved one might qualify for hospice.

Vickie Wacaster, Patient and Hospice Advocate with Aveanna Hospice (formerly Comfort Care Hospice)

Contrary to some beliefs, dementia is not a normal part of aging. Although we may all have what we “loosely” refer to as “senior moments,” dementia is a disease, and not everyone has it or will get it!

Alzheimer’s disease, the most common form of dementia, affects 5.2 million Americans. According to the American Academy of Neurology, 10% of people older than 65 and nearly 50% of people older than 85 have Alzheimer’s disease. The Alzheimer’s Association estimates that there will be as many as 7.7 million Americans with Alzheimer’s by 2030 if no prevention strategy or cure is found.

Alzheimer’s disease destroys brain cells and nerves, disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories.

Before you conclude that a loved one’s memory loss and confusion stem from an irreversible disease process, get a thorough medical evaluation. A specific dementia diagnostic evaluation includes:

  • Physical and neurological examinations.
  • Patient and family interviews (including a detailed lifestyle and medical history).
  • Neuropsychological and mental status tests.

Your physician should assess the patient’s functional ability, attention, language, visuospatial skills, memory, and executive functioning. In addition, brain imaging (CT or MRI scans), blood tests, and other laboratory studies may be performed. These evaluations can indicate reversible causes of memory or provide a clinical diagnosis of dementia. However, dementia can only be confirmed at autopsy when brain tissue can be studied. After eliminating treatable causes of memory loss, physicians will consider irreversible dementias, such as Alzheimer’s, a probable diagnosis.

Even if the evaluation uncovers no underlying condition that, with treatment, can reverse dementia, options may be available for easing its symptoms. Knowing the likely cause of dementia, however, is the essential first step toward managing it appropriately.

Early stage

The early stage is often overlooked and incorrectly labeled by professionals, relatives, and friends as ‘old age’ or a normal part of aging. Because the onset of the disease is gradual, it is difficult to identify the exact time it begins. The person may:

  • Show difficulties with language
  • Experience significant memory loss – especially short-term
  • Be disoriented in time
  • Become lost in familiar places
  • Display difficulty in making decisions
  • Lack of initiative and motivation
  • Show signs of depression and aggression
  • Show a loss of interest in hobbies and activities

Middle stage

As the disease progresses, problems become more evident and restricting. The person with dementia has difficulty with day-to-day living and:

  • May become very forgetful – especially of recent events and people’s names
  • Can no longer manage to live alone without problems
  • Is unable to cook, clean, or shop
  • May become extremely dependent
  • Needs assistance with personal hygiene, i.e., toilet, washing, and dressing
  • Has increased difficulty with speech
  • Shows problems with wandering and other behavioral abnormalities
  • Becomes lost at home and in the community
  • May experience hallucinations

Late stage

This stage is one of total dependence and inactivity. Memory disturbances are severe, and the physical side of the disease becomes more apparent. The person may:

  • Have difficulty eating
  • Not recognize relatives, friends, and familiar objects
  • Have difficulty understanding and interpreting events
  • Be unable to find their way around in the home
  • Have bladder and bowel incontinence
  • Display inappropriate behavior in public
  • Be confined to a wheelchair or bed

Presently, there is no curative treatment for dementia; however, some medications are available, which may temporarily slow down the progression of symptoms of dementia in some people.

A person with dementia only qualifies for hospice once the disease has progressed to the last stage. When referring to hospice, the physician must list the type of dementia the patient has. Patients with dementia or Alzheimer’s are eligible for hospice care when they show all the following characteristics:

  • Unable to walk
  • Unable to dress themselves
  • Unable to bathe themselves
  • Incontinence of bowel and bladder
  • Unable to speak or communicate meaningfully (ability to speak is limited to approximately six or fewer intelligible and different words)

Co-morbid conditions that significantly impair the dementia patient’s health and functionality:

  • Congestive heart disease or cardiovascular disease
  • COPD or restrictive lung disease
  • Cerebrovascular disease, including stroke
  • Diabetes mellitus
  • Renal insufficiency
  • Malignancy

Even with no known cure, a great deal can be done for the person with dementia, as well as things to ease the burden on the caregiver. Consult your physician, social worker, or other health professional for more information.

“My eyes do see, My ears do hear, I am still me, so let’s be clear, My memory may fade, My walk may slow, I am Me inside, don’t let me go.” Author unknown.

— Vickie Wacaster is a patient advocate with Aveanna Hospice (formerly Comfort Care Hospice).