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A Being Patient report describes how Scott Cunningham and Sean Terwilliger received Alzheimer’s diagnoses after noticing changes and continuing to seek evaluation. Their accounts show how concerns from patients and families can precede diagnosis, while the reasons for delays in their cases are not fully established.
Being Patient founder Deborah Kan has recounted how two men received Alzheimer’s diagnoses after they and their families noticed changes that prompted further medical evaluation. The report describes Scott Cunningham’s posterior cortical atrophy diagnosis and Sean Terwilliger’s diagnosis at age 60, highlighting how symptoms reported at home may become part of the path to assessment.
Cunningham, a psychiatrist for 40 years, began having difficulty with tasks involving vision and spatial processing, according to Kan’s account of her interview with him and his wife, Anne. He stopped on a 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, but his eye doctor found his eyes were healthy. The doctor eventually contacted his primary care physician and recommended an MRI and a neurologist. A scan in December 2020 confirmed posterior cortical atrophy (PCA), a form of Alzheimer’s that primarily affects visual and spatial processing.
Anne, a social worker, had noticed changes before the diagnosis, including Cunningham placing cabinet knobs in an uneven line without realizing it. Kan wrote that Anne had read about conditions affecting vision and suspected a brain-related cause. She also described the difficulty of interpreting subtle behavior: Anne said it was “really easy to get frustrated and think the person is just being obstinate.” Cunningham cried with relief when he read the diagnosis, Kan reported.
Terwilliger, a former information-technology director and educator, said he did not feel fully like himself after a mini-stroke in 2018. Words came more slowly and numbers became difficult. He requested a cognitive test as a baseline, but, according to the report, four years passed and he saw four primary care doctors in three states before he was tested. He missed the test threshold by one point, which led to a neurologist and an Alzheimer’s diagnosis at age 60. The report does not provide the test name or further clinical details.
How Early Concerns Reach Clinicians
The accounts describe changes in daily life that patients and families raised with clinicians. In Cunningham’s case, an eye examination preceded a referral for further evaluation, including an MRI and neurologist consultation. Terwilliger requested cognitive testing and was later referred to a neurologist. These are individual stories; the report does not establish that similar changes indicate Alzheimer’s or that the same steps will lead to a diagnosis for others.
Kan says observations from people experiencing symptoms and those close to them can provide information that may not arise during a brief appointment. Being Patient is also running a survey on behavioral symptoms of Alzheimer’s, which the report says is intended to gather accounts of changes families see before diagnosis. The article does not describe the survey’s methods or establish that its results will change clinical practice.
The report recounts that the men and their families described changes and sought medical evaluation. It does not offer clinical guidance or recommend a particular course of care.
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Two Routes to Alzheimer’s Diagnosis
The report is part of Being Patient’s Journey to Diagnosis series, which features accounts from people and families dealing with dementia-related symptoms and medical evaluations. Kan says the series aims to capture experiences that may not be represented in clinical records. Her own interest is personal as well as professional: she founded the journalism platform after her mother received an Alzheimer’s diagnosis.
Kan also recalled finding a patient-portal entry showing that her mother had raised memory concerns with a doctor five years before her official diagnosis. The report does not say what was discussed at that earlier appointment or explain why the diagnosis came later. That recollection is presented as Kan’s experience, rather than evidence about how her mother’s care was handled.
The two cases differ in the symptoms described and the evaluations that followed. Cunningham’s account centers on visual and spatial problems and an MRI leading to a PCA diagnosis. Terwilliger’s centers on changes after a mini-stroke, a delayed cognitive test and referral to a neurologist. The source does not provide medical records, test results beyond the reported score, or independent clinical assessments.
““It’s really easy to get frustrated and think the person is just being obstinate.””
— Anne, Scott Cunningham’s wife, as quoted by Deborah Kan
What the Accounts Cannot Establish
The report gives personal accounts, not a broader study of diagnosis delays. It does not establish how often patients’ observations lead to an Alzheimer’s diagnosis, why particular clinicians did or did not arrange testing, or whether different care would have changed either man’s outcome. The source also does not provide full medical histories or independent documentation of the diagnoses.
For Terwilliger, the article does not explain what assessments occurred during the four years before his cognitive test, or how the reported mini-stroke related to later symptoms. For Cunningham, it does not detail the MRI findings or the full diagnostic process beyond the scan, neurologist referral and reported PCA diagnosis. The survey’s size, questions, analysis plan and findings are also not provided.
Continued Reporting and Patient Accounts
Being Patient says its Journey to Diagnosis series will continue drawing on interviews with people living with dementia and their families. The publication is also seeking responses to its survey on behavioral symptoms of Alzheimer’s. The supplied report gives no results or release date for the survey.
Kan relayed neurologist Dr. Marwan Sabbagh’s advice to continue raising concerns and see another doctor if they are dismissed. The report does not announce a policy change or a new clinical guideline. Any diagnosis or evaluation will depend on an individual’s symptoms and assessment by qualified clinicians.
Key Questions
What happened in the report?
Being Patient founder Deborah Kan described two men who received Alzheimer’s diagnoses after changes in vision, thinking or other daily abilities prompted further evaluation. The report focuses on their experiences and those of people close to them.
What is posterior cortical atrophy?
In the report, posterior cortical atrophy (PCA) is described as a form of Alzheimer’s that mainly affects vision and spatial processing. Cunningham’s diagnosis followed an MRI in December 2020, according to Kan.
Does noticing changes mean someone has Alzheimer’s?
No. The article recounts two individual cases and does not say that any particular change proves Alzheimer’s. Concerns about health or cognitive changes should be discussed with a qualified health professional.
What advice did the report give if concerns are dismissed?
Kan relayed neurologist Dr. Marwan Sabbagh’s advice to keep raising concerns and see another doctor if they are dismissed. The report presents this as general guidance, not a diagnosis or guarantee of a particular outcome.
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