Dementia myths, part I - The brain is wider than the sky

Putting the science in fiction - Dan Koboldt, Chuck Wendig 2018

Dementia myths, part I
The brain is wider than the sky

By Anne M. Lipton, M.D., Ph.D.

Dementia is an all too frequent—and much too often misunderstood—disorder. Of course, every writer of fiction can build a novel brain, hatch new illnesses, or invent cool neurotechnology. But an understanding of dementia in this neck of the universe may help a writer dealing with similar themes to portray a fictional character or scenario with greater authenticity. This chapter provides an introduction to dementia and presents scientific and clinical perspectives to clear up some common misconceptions, which persist both in fiction and in real life.

What is dementia?

Dementia is a neurodegenerative disorder or progressive brain illness. (In clinical terms, progressive is synonymous with progressively worsening.) Rather than referring to a specific disease, however, dementia is a general or “umbrella” term for a constellation of symptoms. There are many different types (and subtypes) of dementia and diverse etiologies (causes), which vary by individual. Dementia may occur as a result of primary neurodegenerative disease (such as Alzheimer’s disease). Or it may be a secondary disorder, brought about by another illness or injury affecting the brain (e.g., strokes).

Dementia is regarded as a clinical diagnosis, which may be confirmed pathologically. To meet clinical criteria for diagnosis, dementia must adversely affect a person’s thinking (cognition) and/or behavior enough to interfere with everyday functioning. (For more information on cognition, see Chapter 19, Misconceptions About Memory.) A diagnosis of dementia is based on the symptoms an individual experiences as well as signs found on clinical evaluation. However, a diagnosis of dementia can only be definitively proven by specific findings on brain autopsy (performed by a pathologist or neuropathologist).

Myth #1: Senility = dementia

Senility simply refers to old age. Hence, “senile dementia” = “old-age” dementia. Medical professionals usually define old age to be age sixty-five or older, and geriatric is the currently preferred clinical term used to refer to this population. Colloquially, both in conversation and in published works, the phrase “getting senile” is frequently misused to refer to someone having memory problems. It behooves everyone, especially writers, to understand and respect the power of words: Don’t confuse senility with dementia.

Age is certainly one of the most significant risk factors in developing dementia. But memory problems interfering with daily function are not a part of normal aging. An individual who is “senile” (age sixty-five or older) does not necessarily have dementia. On the other hand, a person who is younger than sixty-five may develop dementia. Hence, someone who has dementia isn’t necessarily “senile” and may be much younger than sixty-five. Such an individual would be said to have early-onset dementia. It is important to note that early onset dementia is not the same as early-stage dementia.

Early-onset dementia = dementia occurring in an individual younger than sixty-five.

Early-stage dementia = the initial stage (typically, a few years) of dementia, regardless of a person’s age.

While these terms are distinct, they are not mutually exclusive (i.e., someone may have early onset dementia and also be in the early stage of dementia).

Myth #2: “Demented” means psychotic

Dementia may include psychosis but the terms are not equivalent. Psychosis refers to a mental break with reality, which may include hallucinations (sensory misperceptions), delusions (false beliefs), and agitation. People with dementia may develop psychosis, which may or may not be related to their dementia. For example, psychosis may occur secondary to delirium, which is an acute confusional state. Delirium may result from a variety of factors, including infection and/or medications. But dementia is distinct from psychosis, and vice versa. A person with dementia may be competent to make decisions on his own behalf, as opposed to someone who is psychotic (i.e., has lost touch with reality and experiences hallucinations and/or delusions).

To be respectful—and to avoid confusion—it is usually best to say someone “has a dementia or dementing illness,” rather than that the individual “is demented.” The same is true of “psychosis” instead of “psychotic.” A person may have a disease, but a person is not the disease.

So don’t let the disease define a person—at least not in real life. In fiction, illness may provide a rich vein of internal goals, obstacles, and stakes for a character and story. Although when it comes to fiction, a writer should be mindful of the usage of such words and consider a sensitivity or expert reader as needed.

Myth #3: Alzheimer’s disease and dementia are the same thing

All Alzheimer’s disease is dementia, but not all dementia is Alzheimer’s disease. Alzheimer’s disease is a common and well-known type of dementia, but there are many others, including (but not limited to) vascular dementia, mixed dementia (specifically, Alzheimer’s disease plus vascular dementia), Parkinson’s disease dementia, dementia with Lewy bodies (DLB), and frontotemporal dementia (FTD). Each type of dementia differs in terms of signs and symptoms (particularly in onset), disease course and duration, and other associated factors.

In Alzheimer’s disease, memory is typically the first and worst problem: “Memory leads the way,” the saying goes. For example, a person with Alzheimer’s disease may have difficulty recalling recent events. However, changes in mood, insight, or language may also herald Alzheimer’s disease.

Vascular dementia is associated with strokes, and symptoms depend on the location of the strokes in the brain. Mood symptoms such as agitation, apathy, depression, and irritability are commonly seen. But memory is usually not as impaired in an individual with vascular dementia as it is in Alzheimer’s disease. The progression of vascular dementia tends to have a stair-step progression with worsening after a stroke, followed by a plateau of symptoms until the next stroke. Thus, stroke prevention is a mainstay of treatment.

Parkinson’s disease has a typical duration of decades and motor symptoms (parkinsonism) that persist long before the onset of dementia symptoms. The cardinal motor symptoms of Parkinson’s disease are rest tremor (usually beginning on one side), slowness of movement (bradykinesia), postural instability (tendency to fall, especially backwards), and rigidity. A good response to antiparkinsonian medication helps validate the diagnosis.

DLB is characterized by vivid hallucinations and parkinsonism, as well as dementia with cognitive fluctuations, all initially occurring within two to three years. Patients with DLB typically do not respond as well to antiparkinsonian medication as those who have Parkinson’s disease.

FTD often affects people under age sixty-five and has speech/language variants and behavioral variants. Memory may be intact in initial stages. FTD may be associated with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) and/or parkinsonism. A number of genetic mutations have been identified in families affected by FTD.

Myth #4: Dementia begins with memory loss

As noted in the previous section, memory loss is typically the presenting symptom for Alzheimer’s disease but not for many other types of dementia. If a person has dementia, and memory is NOT the initial symptom, this may suggest a type of dementia other than Alzheimer’s disease.

Myth #5: Dementia is a fast-moving process

Dementia usually results in the gradual decline of cognition, behavior, and functioning over a period of years or even a decade or more. Even a “rapidly progressive dementia” typically occurs over a duration of many months to a few years.

In Harry Potter and the Prisoner of Azkaban (Arthur A. Levine Books, 1999), J.K. Rowling coined the term dementors for demonic tormentors who suck memories (and other cognitive abilities) from someone’s brain. Although the name dementor may conjure up the term dementia, the sudden and precipitous amnesia and other cognitive loss that dementors inflict is not typical of the insidious onset and gradual decline seen in dementia.

Dementia sometimes appears to occur suddenly when a hospitalization or other crisis brings it to light (e.g., police escorting home someone who has become lost). But a good medical history (described in the next chapter) can often uncover previous problems.