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A Being Patient report recounts how Scott Cunningham and Sean Terwilliger sought care for changes in vision, spatial processing, language and numeracy before receiving Alzheimer’s diagnoses. Their accounts show how observations by patients and families can help prompt evaluation, but they do not establish how often such delays occur or prove that every similar symptom signals dementia.
Being Patient has published accounts of two men who noticed changes in their thinking or perception before receiving Alzheimer’s diagnoses, highlighting how patients’ and families’ observations can help prompt medical evaluation. Scott Cunningham’s diagnosis of posterior cortical atrophy was confirmed by a scan in December 2020; Sean Terwilliger received an Alzheimer’s diagnosis at age 60 after years of asking for cognitive testing.
Cunningham, a psychiatrist who worked for 40 years, began having trouble with tasks involving vision and spatial processing. He stopped on a 55-mile-per-hour freeway because he could not make out the lanes and later said he could not read an analog clock. He initially suspected an eye problem and underwent cataract surgery in both eyes. When his difficulties continued, his eye doctor recommended that his primary care physician arrange an MRI and a visit with a neurologist. The scan identified posterior cortical atrophy (PCA), a form of Alzheimer’s that primarily affects visual and spatial processing.
His wife, Anne, had noticed changes at home, including a cabinet installation with knobs that were not in a straight line. She told Being Patient that the signs could be subtle enough for relatives to mistake them for stubbornness. Cunningham said he felt relief when the diagnosis gave an explanation for what had been happening.
Terwilliger’s account followed a different path. After a mini-stroke in 2018, he said words came more slowly and numbers became harder to manage. He requested a cognitive test as a baseline, but, according to the report, it took four years, four primary care doctors and moves across three states before he received one. He missed the test’s passing mark by one point, leading to a neurologist and an Alzheimer’s diagnosis at age 60.
How Early Observations Can Guide Care
The accounts illustrate how changes noticed in daily life may offer useful information for a medical assessment, especially when a person can describe what has changed and when it began. Family members may also notice differences that are hard to capture in a brief appointment. In Cunningham’s case, the eye doctor’s referral connected persistent visual difficulties with further neurological evaluation; Terwilliger’s repeated request eventually led to testing and specialist care.
These are individual stories, not population-level evidence. They cannot show how common diagnostic delays are or establish that comparable problems necessarily mean Alzheimer’s. Vision, language, memory and number difficulties can have different causes. The report’s wider point is that concerns deserve to be heard and evaluated rather than treated as a diagnosis in themselves.
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Two Paths to a Diagnosis
The report appears in Being Patient’s Journey to Diagnosis series, which features people describing their experiences with dementia assessment. Founder and CEO Deborah Kan said the series aims to share accounts that may not appear in medical records. Kan connected the subject to her own family: after her mother died, she found a patient-portal record showing that her mother had raised memory concerns with a doctor five years before her official diagnosis. The report does not provide further details about that earlier visit.
Kan also said Being Patient is conducting a survey about behavioral symptoms of Alzheimer’s. She argued that changes families see at home before diagnosis can offer insights into care. The source does not provide survey findings, response totals or a publication date for results, so the survey’s reach and conclusions are not yet available.
“I wasn’t diagnosing myself with anything, but I was acknowledging an issue, and I could not get anyone to join me on that quest.”
— Sean Terwilliger, as quoted by Being Patient
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What These Accounts Cannot Establish
The report offers two personal accounts, not a study measuring diagnostic access or delay. It does not say whether either man’s experience is typical, what other possible explanations clinicians considered, or what specific treatment and support followed diagnosis. No independent medical records or interviews with the clinicians involved are included in the supplied source material.
The Being Patient survey is also ongoing in the report, with no results given. The accounts do not mean that every change in vision, speech, memory or numeracy indicates Alzheimer’s. The cause of a person’s symptoms and the appropriate evaluation remain matters for qualified health professionals.
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Further Reporting and Survey Results
Being Patient says its Journey to Diagnosis series will continue sharing conversations with people affected by dementia. The organization is also seeking responses to its survey on behavioral symptoms; the source does not state when findings may be released. For readers concerned about changes in themselves or someone close to them, Kan relayed Sabbagh’s advice to raise those concerns with a doctor and seek another medical opinion if they are dismissed. A clinician can assess symptoms and decide whether further testing or referral is appropriate.
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Key Questions
What is posterior cortical atrophy?
Posterior cortical atrophy, or PCA, is a form of Alzheimer’s described in the report as primarily affecting vision and spatial processing. Cunningham’s diagnosis was confirmed by a scan in December 2020.
How long did Terwilliger wait for a cognitive test?
According to Being Patient, four years passed between his request and receiving a test. During that period, he saw four primary care doctors and lived in three states.
Do these symptoms confirm Alzheimer’s?
No. The accounts describe symptoms that preceded diagnoses in two individuals; they do not show that similar changes always indicate Alzheimer’s. A qualified health professional can assess a person’s situation and determine whether testing is needed.
What does the Being Patient survey cover?
The report says Being Patient is conducting a survey about behavioral symptoms of Alzheimer’s and the changes families observe at home. It does not provide results, response numbers or a date for publication.
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