Story Expansion
Alzheimers versus dementia. The lurking evil within the beautiful organ.
In writing “Memories Come,” many things were considered. The process took years to finish. Here’s an article which contributes to the understanding of the lurking evil our minds all possess and hopefully sheds some light on terminology associated.
Margaret’s neurologist told her family she had dementia. Her internist said it was probably Alzheimer’s. The memory care facility intake coordinator used the terms interchangeably. By the time Margaret’s daughter researched the difference, her mother had been prescribed the wrong medications for six months and enrolled in a clinical trial studying a disease she didn’t have.
Margaret’s story isn’t unusual—it’s epidemic. Families, clinicians, policymakers, and media treat “Alzheimer’s” and “dementia” as twins. They are not. This diagnostic laziness wastes billions of dollars, derails promising research, and betrays the dignity of aging minds. The lurking evil isn’t just the diseases themselves—it’s our refusal to name them precisely.
Dementia describes a syndrome where cognitive decline interferes with independence. Alzheimer’s disease is one specific cause of that syndrome—the most common, accounting for 60-80% of cases, but neither exclusive nor inevitable.
This isn’t semantic nitpicking. When a patient presents with fever, we don’t shrug and call it “fever disease.” We investigate whether it’s pneumonia, influenza, or something else entirely. The treatment depends on the cause. Yet mention memory problems, and suddenly precision evaporates. “It’s all the same thing,” families are told. “Don’t worry about the details.”
The details matter. Vascular dementia responds to blood pressure control and stroke prevention. Lewy body dementia can be worsened fatally by standard psychiatric medications. Frontotemporal dementia often strikes people in their fifties with dramatic personality changes while memory remains intact. Normal pressure hydrocephalus can sometimes be treated with surgery. Depression can mimic dementia entirely.
Mix these conditions together under the Alzheimer’s umbrella, and you get wrong treatments, missed opportunities, and false expectations. The patient suffers. The family despairs. The research gets muddied.
For decades, Alzheimer’s drug trials enrolled anyone with dementia symptoms, regardless of underlying pathology. We were testing Alzheimer’s drugs on people who didn’t have Alzheimer’s disease. The predictable result: failure after failure, billions wasted, promising compounds discarded.
Only when researchers began requiring biomarker proof of Alzheimer’s pathology—actual amyloid plaques and tau tangles, not just symptoms—did we see the first drugs that actually slow disease progression. Lecanemab and donanemab aren’t miracle cures, but they represent the first measurable victories against Alzheimer’s biology in a quarter-century. Victory came from precision, not wishful thinking.
When everything is “Alzheimer’s,” every breakthrough claim applies to your loved one. Families chase coconut oil, high-dose vitamins, and expensive supplements marketed for “Alzheimer’s and dementia” without knowing whether these approaches target their specific situation. They enroll in support groups focused on the wrong disease. They make end-of-life decisions based on Alzheimer’s timelines when their family member might have something with a different trajectory entirely.
Resources get misallocated. The Alzheimer’s Association—a powerful advocacy organization—has inadvertently contributed to diagnostic confusion by expanding its mission to “Alzheimer’s and all other dementias.” This dilutes focus and expertise. Vascular dementia, which affects millions and responds to proven cardiovascular interventions, gets a fraction of the attention and funding of rarer genetic forms of Alzheimer’s. Meanwhile, Lewy body dementia remains so poorly recognized that the average time from symptom onset to correct diagnosis is seven years.
Healthcare systems fail to adapt. If it’s all “Alzheimer’s,” then one-size-fits-all approaches seem reasonable. Memory care units use identical programs for people with entirely different needs. Insurance companies develop blanket policies for “dementia” without recognizing that different types require different monitoring, different medications, and different safety precautions.
Consider Robert, whose frontotemporal dementia was misdiagnosed as Alzheimer’s for three years. While his family focused on memory aids and cognitive exercises that didn’t help, his behavioral symptoms escalated. He lost his job, damaged relationships, and eventually required psychiatric hospitalization—all because no one recognized that his preserved memory and prominent personality changes pointed to a different disease entirely.
Or Linda, whose Lewy body dementia was treated with standard antipsychotic medications that triggered a life-threatening reaction. Her family had mentioned visual hallucinations and movement problems to multiple doctors, but those classic Lewy body symptoms were dismissed as “typical dementia symptoms.”
These aren’t rare cases or outliers. They represent systematic failures that occur when precision is abandoned in favor of diagnostic convenience.
The Netherlands provides a glimpse of what’s possible when diagnostic precision drives system design. Their memory clinics require multidisciplinary evaluation before diagnosis. Neuropsychologists, neurologists, and geriatricians work together to distinguish between dementia types. The result: more accurate diagnoses, more targeted treatments, better family preparation, and more coherent research.
In clinical trials, the biomarker revolution has already transformed Alzheimer’s research. The new generation of studies—those testing lecanemab, donanemab, and upcoming combination therapies—require participants to have measurable Alzheimer’s pathology before enrollment. The effect sizes are modest but real, and for the first time in decades, families of people with early-stage Alzheimer’s have access to treatments that measurably slow progression.
Blood-based biomarkers for amyloid and tau proteins are moving from research labs to clinical practice, promising to make accurate diagnosis faster and more accessible. Instead of expensive PET scans or lumbar punctures, a simple blood test may soon distinguish Alzheimer’s from other dementias with 90% accuracy.
Stop using “dementia” and “Alzheimer’s” interchangeably in conversations with families. When you suspect dementia, say so clearly, then explain that determining the cause requires investigation. Use the extra time created by precision to discuss what families can expect and what options exist for each specific diagnosis.
When a doctor mentions memory problems, ask specifically: “Do you think this is Alzheimer’s disease, or could it be something else?” Don’t accept vague answers. If the diagnosis isn’t clear, ask about biomarker testing or specialist referral. Join support groups specific to your family member’s diagnosed condition, not generic “dementia” groups.
Fund research infrastructure that supports precision diagnosis. This means training programs for multidisciplinary memory clinics, reimbursement for biomarker testing when clinically appropriate, and data systems that track outcomes by specific dementia type rather than lumping everything together.
Stop treating every memory-related study as relevant to “Alzheimer’s and dementia.” When reporting on Alzheimer’s research, specify that findings apply to Alzheimer’s disease specifically. When covering other dementias, name them explicitly. Families deserve accurate information, not headline convenience.
Continue the biomarker revolution. Develop better diagnostic tools, study combination therapies targeted to specific pathologies, and resist the temptation to expand study populations for the sake of easier recruitment.
We stand at an inflection point. For the first time, we have treatments that measurably slow Alzheimer’s disease progression. Blood-based biomarkers promise to revolutionize diagnosis. Precision medicine approaches are emerging that could tailor treatments to specific disease subtypes.
But these advances will fail if we continue to treat precision as optional. If everything remains “Alzheimer’s” in practice, we’ll waste the next generation of therapeutic breakthroughs just as we wasted the last.
The lurking evil isn’t just the diseases that steal minds and break families. It’s our collective willingness to accept diagnostic laziness as good enough. It’s the habit of treating complexity as inconvenient rather than essential. It’s the preference for false simplicity over difficult truth.
Margaret’s daughter eventually found a neurologist who took the time to distinguish between her mother’s vascular dementia and Alzheimer’s disease. The correct diagnosis led to better blood pressure management, different medications, and more appropriate family planning. Margaret’s decline slowed. Her family gained precious time.
That’s what precision offers: not miracles, but measurable improvements. Not false hope, but informed decisions. Not perfect outcomes, but better ones.
The choice is ours. We can continue the lazy habit of calling everything Alzheimer’s and accept the waste, confusion, and missed opportunities that follow. Or we can demand the diagnostic precision that patients deserve and that effective treatment requires.
The diseases are terrible enough without making them worse through willful imprecision. It’s time to call things by their right names and fight each battle with the weapons that actually work.
The lurking evil thrives on our shortcuts. Precision is how we take its power away.
References
- National Institute on Aging. What is dementia? and What is Alzheimer’s disease?
- NWorld Health Organization. Dementia fact sheet.
- NJack CR Jr, et al. NIA-AA Research Framework, 2018.
- NUCLA Easton Center and NIA. Alzheimer’s Disease Medications Fact Sheet. Mayo Clinic. Treatment overview.
- Nvan Dyck CH, et al. Lecanemab in Early Alzheimer’s Disease. U.S. FDA. Leqembi prescribing information.
- NSims JR, et al. TRAILBLAZER-ALZ 2. U.S. FDA. Kisunla clinical review and safety review.
- NLivingston G, et al. Lancet Commission 2020. 2024 update in The Lancet.
- NAlzheimer’s Association. 2025 Facts and Figures.
For additional information check out Broken English Books’ “Behind The Screenplay” feature about “Memories Come.”
