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Being Patient founder Deborah Kan says readers responding to a newsletter request asked for help with care costs, risk and testing, daily caregiving, clinical trials and peer support. The publication says it plans to expand resources in 2027, with helping readers connect remaining a central goal.
Being Patient founder Deborah Kan says readers who answered her request for feedback want practical guidance on dementia care, clearer information about research and ways to connect with others facing similar experiences. In a letter published by the Alzheimer’s and brain-health news platform, Kan said the responses will inform its coverage, while describing plans to expand resources in 2027.
Kan wrote that many respondents asked about the period after a diagnosis, when families may need to make care decisions without a clear plan. Their questions included how to pay for care with limited savings or no long-term care insurance, whether Medicare or the Department of Veterans Affairs could help pay for care at home, when to consider leaving a long-time home and how to prepare for later stages of the disease.
Readers also raised questions about personal risk and testing, including concerns among people who have seen a parent develop dementia or learned they carry the ApoE4 gene. Others asked how to manage repeated questions and other difficult daily moments, and requested continued coverage of research, including how to identify and understand clinical trials that are recruiting participants.
Kan said a recurring request was the chance to meet others in comparable situations. People in early stages of a diagnosis, caregivers seeking support groups and people with a genetic risk but no symptoms all described wanting connection. The letter does not report a formal survey or provide counts for each request; it presents themes from emails readers sent after Kan invited them to reply.
Readers Seek Practical Help and Peer Support
The responses point to needs that extend beyond information about dementia research. Families may face immediate choices about care costs, housing and support, while people at risk or living with a diagnosis may be looking for guidance that reflects their circumstances. The letter identifies those topics as priorities readers want the publication to address, rather than reporting a new policy or clinical finding.
Connection is another central concern. Peer groups can give people a way to share experiences and find others at a similar stage, although Kan’s letter does not claim that connection replaces professional, medical or social-care support. It describes the publication’s role as helping readers find one another alongside providing journalism and practical information.
Kan also pointed to examples of readers turning stories into contact and advocacy. Luke Davis, who was diagnosed with Alzheimer’s in April 2023, told her that interviews had helped him connect with people featured by Being Patient. The account illustrates a possible outcome of publishing patient and caregiver stories; it does not establish how often such connections occur across the readership.
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Stories That Led Readers to Connect
Kan founded Being Patient after her mother’s Alzheimer’s diagnosis, following a career as a journalist at The Wall Street Journal. She said she created the platform to explain dementia research in clear, unbiased reporting for people with diagnoses and their caregivers.
In the letter, Kan links the current reader feedback to the publication’s Journey to Diagnosis series, which began in late 2024. She said the series’ stories had been viewed more than 1.5 million times on Facebook and TikTok. That figure is a combined view count on those platforms, as reported by Kan; the letter does not provide a measurement period or a breakdown by platform.
Kan cited Karen Sandone, whose husband Anthony was diagnosed with younger-onset Alzheimer’s at 55. Sandone and three other women started a support group called Surviving the Now; Kan said it drew more than 400 participants over two months, almost all through social media. The letter presents the group as an example of people organizing peer support after sharing their stories.
““I love reaching out to some of the Being Patient guests, both to develop connections and to invite them to be Voices of Alzheimer’s champions.””
— Luke Davis, in a text message quoted by Deborah Kan
How Reader Requests Will Shape Coverage
Kan’s letter does not give the number of people who replied or a breakdown showing how common each request was. The themes reflect the emails she received, not results from a representative survey. It is also unclear which specific articles, services or support resources Being Patient will introduce in response to each topic.
The letter mentions plans for 2027, including help finding clinical trials and clearer information on home care and assisted living, but gives no launch dates or operational details. It does not say whether the planned resources will be available nationally, how readers will access them or whether they will involve outside organizations.
Being Patient Points to 2027 Plans
Kan said Being Patient is developing plans for 2027 that would make it a destination for brain-health and dementia information. She named help finding clinical trials and easier-to-use information about home care and assisted living as areas in development. The letter did not provide a schedule or further specifications.
The publication is also inviting people living with a diagnosis or caring for someone to share how they reached that point, directing prospective contributors to its contact attributions. Kan said that helping readers find each other would remain central to the work. Details on any new programs, their timing and how reader feedback will shape them have not yet been announced.
Key Questions
What did Being Patient readers ask for?
According to founder Deborah Kan, readers asked about care costs, housing decisions, risk and testing, daily caregiving, clinical trials and ways to connect with others in similar situations.
Was the feedback collected through a formal survey?
Kan described receiving emails after asking readers to reply with the three things they most wanted help with. Her letter does not describe a formal survey, give the number of replies or report how representative the responses were.
What plans did Being Patient describe for 2027?
Kan said the publication was developing resources to help people find clinical trials and understand home care and assisted-living options. She did not provide launch dates or details about how the resources would work.
What is the Journey to Diagnosis series?
It is a Being Patient series featuring people’s experiences around reaching a dementia diagnosis. Kan said it began in late 2024 and that its stories had received more than 1.5 million views on Facebook and TikTok, without specifying the measurement period.
Source: rss
