Journey to Diagnosis is a Being Patient series sponsored by Eisai. As with all of our reporting, the sponsor has no role in choosing guests, shaping questions, or reviewing content before publication.
Eisai:
Journey to Diagnosis:
Nancy Nelson received an early-onset Alzheimer’s diagnosis in 2013 — news that changed her life and forced her to rethink what the future could look like. Nelson has channeled her diagnosis into creativity and advocacy, publishing three poetry books, participating in research, and leading early-stage support groups for others living with dementia. She later received a diagnosis of mild cognitive impairment in 2018.
Nelson joined forces with Kat Hartley, a pharmacist and brain health professional whose personal life and career have been shaped by Alzheimer’s across generations of her family. Together, they co-founded dangle & dot, a social enterprise built to challenge stigma and reimagine what it looks like to live, work, and connect with dementia.
In this conversation with Being Patient’s founder, Deborah Kan, Nelson reflects on the power of early diagnosis and the value of staying socially engaged after a diagnosis. Hartley offers the perspective of a care partner and advocate working to replace the usual tragedy narrative with one rooted in dignity, resilience, and connection. Their discussion highlights a central message: while dementia brings real change, purpose, community, and support can still shape a rich and active life.
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Being Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia.
Check out our latest Live Talks:
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0:00 Intro
0:10 Meet Nancy Nelson and Kat Hartley of dangle & dot
1:39 Nancy’s first symptoms and diagnosis journey
2:56 Kat’s family history with Alzheimer’s
4:36 Genetic risk, ApoE4, and prevention
5:15 How poetry emerged after diagnosis
7:24 “Blue River Apple” and memory testing
8:51 Kat’s work in Alzheimer’s research
10:18 How dangle & dot began
10:52 Nancy’s diagnosis and medication decision
12:26 Living well 13 years after diagnosis
13:01 Amyloid PET scan, MCI and Alzheimer’s pathology
15:04 Changes over time and the role of support
16:59 Purpose, dignity, and staying engaged
17:57 Writing books and redefining life after diagnosis
18:23 What “doing dementia differently” means
19:41 The dangle & dot mission
22:09 Why social connection matters
23:23 Nancy’s full, active life after diagnosis
24:57 What caregiving and friendship can teach us
25:47 Advice for those newly diagnosed
26:50 Final thoughts
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