I’m Still Me: Scott Redfern on Living With Alzheimer’s | Scott Redfern

Full analysis

Scott Redfern, 62, was diagnosed with early-stage Alzheimer's last year after years of advocating for a proper workup — and is now seven months into infusions of lecanemab (Leqembi), one of the first drugs shown to slow the disease's progression. His account is a practical guide to what the path from "something feels off" to actual treatment looks like, and what sustains a person through it.

What was covered

• First symptoms and the long road to diagnosis. Redfern, now nearly 62, began noticing word-finding problems around age 56 — especially in stressful work meetings. Family history of Alzheimer's on his mother's side made him take the symptoms seriously. Initial cognitive testing (the MoCA — Montreal Cognitive Assessment, a standard screening tool) and an MRI came back essentially normal. A newer blood test called the p-tau 217 came back inconclusive. Only after he kept insisting did his care team order an amyloid PET scan (a brain imaging test that detects amyloid protein buildup associated with Alzheimer's), which confirmed the diagnosis.

• The case for self-advocacy. Redfern's first neurological group was dismissive. He and his wife pushed back repeatedly, eventually securing care at Yale and at Mass General/Brigham — teams he describes as both expert in younger-onset Alzheimer's and genuinely compassionate. His message: if you sense something is wrong, don't accept a brushoff.

• Lecanemab (Leqembi) treatment, seven months in. Lecanemab is an intravenous anti-amyloid drug — approved for people in Alzheimer's early stages — that Redfern receives every two weeks. He chose it over donanemab (Kisunla), the other approved option, based on his own research. He reports no significant side effects: no ARIA (amyloid-related imaging abnormalities, a form of brain swelling that is the drug's most serious risk), no headaches, no nausea. He is also enrolled in a clinical study tracking lecanemab patients, with monthly cognitive testing. His six-month test results were due to be reviewed at the end of July.

• APOE e4 genotyping as a safety screen. Before starting lecanemab, Redfern had genetic testing. He carries no copies of the APOE e4 allele — the gene variant that substantially raises both Alzheimer's risk and the risk of ARIA from anti-amyloid drugs. That result made him a lower-risk candidate for treatment.

• Managing identity after diagnosis and retirement. Redfern retired to prioritize treatment and time with family. He frames identity preservation around consistency: continuing volunteer work in environmental conservation, mentoring young survivors of domestic violence, solo backpacking, and writing. He completed a hundred-mile backpacking trip in Maine days before this recording.

• The "four pillars" framework and practical coping. Redfern references what he calls the Alzheimer's Association's four pillars of brain-health prevention: physical activity, adequate sleep, healthy eating, and social connection. He identifies social connection as the area he had most neglected, and deliberately rebuilt it post-diagnosis.

• Public disclosure and the Substack "I'm Still Me." Redfern decided on day one of his diagnosis to go public rather than hide the illness, writing openly about his experience. He told his adult children (ages 34 and 31) only after he had the full workup and his first infusion scheduled — so he could share bad news alongside a treatment plan. He urges others not to underestimate their support networks.

Notable claims & predictions

• Scott Redfern: "Not getting a diagnosis doesn't mean you don't have the disease — and a number of years ago that might be fine because there was nothing you could do. But today there are treatments that actually slow the progress, so going and getting diagnosed is essential. The earlier it's diagnosed, the better these drugs are at slowing progression."

• Scott Redfern on the p-tau 217 blood test: His result came back inconclusive — illustrating that this newer blood marker, while promising, does not always give a clear answer, and that a negative or ambiguous result should not end the inquiry if symptoms persist.

• Scott Redfern on ARIA risk and APOE e4: Having no copies of APOE e4 meaningfully reduces the risk of the most serious side effect of anti-amyloid therapy. Patients considering lecanemab or donanemab should expect genotyping as part of the pre-treatment evaluation.

• Scott Redfern on choosing between lecanemab and donanemab: He chose lecanemab partly because of what he describes as its ability not only to clear existing amyloid plaque but also to suppress future buildup of toxic oligomers (the soluble, early-stage forms of amyloid thought to be particularly damaging). He presented this as a personal research conclusion, not a physician recommendation.

• Scott Redfern on disclosure: "Have faith in your support network — they are going to be far more supportive than you might think. Share with your friends. It's so much better than suffering in silence."

Fact check

Redfern's claim about lecanemab suppressing toxic oligomers as a reason to prefer it over donanemab. This reflects ongoing scientific discussion rather than settled fact. Both drugs target amyloid, but their binding profiles differ — lecanemab binds preferentially to protofibrils (a form of soluble oligomer), while donanemab targets a modified form of plaque. The clinical significance of that difference in long-term outcomes has not been definitively established. Redfern was transparent that this was his own research interpretation, not a physician directive. Readers should treat it as one informed patient's reasoning, not a clinical consensus.

The "four pillars" attribution to the Alzheimer's Association. Redfern cites this framework without a specific source document. Various organizations and researchers use similar frameworks; whether this exact formulation originates with the Alzheimer's Association is unverified from the transcript alone. The underlying lifestyle factors (exercise, sleep, diet, social engagement) are broadly supported by research, so the practical advice stands regardless of attribution.

No other claims in this episode fail scrutiny. Redfern is careful to frame his experience as personal, not prescriptive, and host Mark Niu does not make independent factual assertions that require checking.

Why this matters for you

• If you or someone close to you is brushing off word-finding problems as "senior moments," this episode makes a concrete case for getting a formal evaluation now. The treatment window for lecanemab and donanemab is specifically the early stage of Alzheimer's — once the disease has progressed, these drugs are no longer indicated. Waiting costs access.

• Standard cognitive screening (the MoCA) can miss early Alzheimer's. Redfern scored 30 out of 30 — a perfect score — and still had confirmed amyloid buildup on PET imaging. If a neurologist says "the test is fine, come back if it gets worse" but something still feels wrong, Redfern's path shows it is reasonable to push for the amyloid PET scan or blood-based biomarker testing.

• APOE e4 genotyping is now part of the clinical conversation before starting anti-amyloid therapy. If you or a family member is being evaluated for lecanemab or donanemab, ask whether genotyping has been done — it directly affects the risk profile for ARIA.

• The identity and caregiving dimensions here are real and practical. Redfern's strategy — maintaining consistent activity, going public rather than hiding the diagnosis, waiting until a treatment plan was in place before telling his adult children — offers a usable template for others navigating early diagnosis. His wife Jan's role as primary support person also illustrates the caregiving load that falls on a spouse from the moment of diagnosis forward.