Down with ‘dementia’

Recent advancements in diagnosing and treating what most laypeople call “dementia” make early intervention more critical than ever. To have a fruitful dialogue about aging and cognitive health, we must establish an accessible vocabulary around “dementia.” What thoughts come to mind when you hear the word “dementia”? When you imagine a “person with dementia,” what does he or she look and sound like? How would you feel if your doctor diagnosed you or someone you loved with “dementia”? Fearful, hopeless, devastated?

Given the advances in dementia diagnosis and treatment, why do we still react so viscerally to the idea of dementia? Some in the field of gerontology believe the term “dementia” is inherently stigmatizing and medically inaccurate and should be changed. Individuals who have a negative “gut reaction” to the term “dementia” may avoid going to a specialist and miss early opportunities for impactful treatment.

I work with older adults, including individuals with age-related cognitive changes. I can attest (anecdotally) that most people react more fearfully to the idea of having dementia than any other condition. Research conducted by AARP in 2021 confirms that among people 40 and older, Alzheimer’s disease was the most feared disease (more than cancer, stroke and heart disease combined). Using the term “dementia” invokes strong negative emotions that often preclude, interrupt or end constructive discussion about treatment and intervention. The reaction to dementia is like a fire of fear. It is lit by our profound discomfort with any illness characterized as mental (as opposed to physical), stoked by outdated misconceptions that nothing can stop or slow dementia, and sustained by wrongful biases against older adults. It is imperative to change all these corrosive elements to accommodate our graying population (Population Reference Bureau).

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One way to quell this proverbial fire is to stop using the term “dementia,” especially in the absence of a formal diagnosis. Terms like “memory loss” and “cognitive changes” accurately describe dementia-like symptoms, without provoking emotions or avoidance. It bears noting that dementia itself is not a disease, but rather an umbrella term for a pattern of symptoms (like impaired memory and thinking, and changes in mood and behavior) with diverse causes.

The underlying condition or disease impacts what dementia-type symptoms a person exhibits. Recent research forecasts that dementia treatment will become increasingly disease-specific or person-specific. This makes early and accurate diagnosis of the underlying cause of an individual’s dementia symptoms more important than ever.

Common causes of dementia symptoms include Alzheimer’s disease, vascular dementia, Lewy body dementia, Parkinson’s disease, and Frontotemporal Dementia. Each condition damages the brain in a unique manner although mixed forms often exist with indistinct boundaries (WHO). Alzheimer’s disease, which contributes to 60-70% of all dementia cases (WHO), is caused by a build-up of amyloid plaque chains and tau protein tangles in the brain causing neurodegeneration. Vascular dementia, resulting from stroke, protein buildup, or atherosclerosis (abnormal aging of blood vessels), occurs when brain blood vessels become damaged and cannot deliver enough oxygen and fuel to support brain function (Mayo Clinic). Lewy body and Parkinson’s disease dementia occur when abnormal proteins settle inside the nerve cells (WHO/Johns Hopkins). Frontotemporal dementia involves degeneration of the frontal brain lobe responsible for judgment, learning, planning, voluntary muscle movement, personality and self-control (Cleveland Clinic).

Medications and lifestyle practices (like physical exercise, healthy diet, mental stimulation, social interaction and reminiscence therapy) can slow the progression of these conditions especially with early intervention. The fact that dementia-type conditions are not curable at present should not deter a person from seeking treatment. Advances in diagnosing and treating these diseases are developing rapidly. For example, the FDA recently approved a blood test that can detect amyloid plaques in early-stage Alzheimer’s disease (World Economic Forum). Scientists are actively researching other methods and tools that detect, for example, significant biomarkers, elevated tau levels in cerebrospinal fluid, and abnormal brain patterns (World Economic Forum). Early detection is key because new therapies (antibodies, immunotherapy and medications that target amyloid plaques and tau tangles) show the most promise when administered at an early stage (World Economic Forum).

It is my hope that in 10 years, we will no longer fear changes in our memory and cognition. Eliminating the term “dementia” is a small but meaningful step in that direction. PJC

Hillary K. Green is the program coordinator, Memory Café & StoryCorps, of the Jewish Community Center of Greater Pittsburgh, AgeWell at the JCC.