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Being Patient founder Deborah Kan says readers responding to a request for feedback asked for help with care costs, testing and risk questions, daily caregiving and clinical trials. Many also said they want to connect with people facing similar diagnoses or concerns. The publication says it plans to expand its resources and community work in 2027.
Being Patient readers who responded to a request for feedback asked for practical guidance on dementia care, risk and treatment research, as well as ways to meet others in similar situations, founder and CEO Deborah Kan reported. The responses are informing the publication’s planned resources and community work, which Kan said it is developing for 2027.
Kan said she invited readers to reply with the three things they most wanted help with and received emails ranging from short lists to longer personal accounts. She wrote that she was still responding to the messages when she published her report. The article does not describe the responses as a formal survey or provide a total number of respondents, so the requests represent reader feedback rather than a measured poll.
Many readers asked about the practical period after diagnosis, including how families can pay for care when they have limited savings or no long-term care insurance, and whether Medicare or the VA can help cover care at home. Other questions concerned moving from a longtime home, preparing for later stages, and managing repeated questions or other difficult moments in daily caregiving. Kan also highlighted readers who had cared for someone before receiving a diagnosis themselves.
Other correspondents asked about personal risk, including ApoE4, when to seek testing and how to identify trustworthy guidance. Readers also wanted continued coverage of dementia research, particularly information on clinical trials and how to interpret trial details. Across these topics, Kan said a recurring request was to find peers: people newly diagnosed, caregivers seeking support groups, and people with genetic risk who feel isolated.
Readers Ask for Guidance and Peers
The feedback points to needs that extend beyond understanding a diagnosis: families are looking for usable information about care planning and costs, while people living with dementia or worried about risk want contact with others who understand their circumstances. Those needs can shape what questions a dementia news and information service prioritizes, though the report does not establish how common each concern is among the wider public.
Kan’s account also describes peer connection as a route to participation and advocacy. She cited reader Luke Davis, who said Being Patient interviews helped him connect with other people and described how his own public advocacy grew from a short video shared on the publication’s Facebook page. These are individual experiences, not evidence that every reader will have the same outcome. Still, they illustrate why the publication says it wants to make community-building part of its work alongside reporting.
For readers, the report signals an intention to address both information gaps and isolation. It does not announce a new service already available, or specify how forthcoming support will work; its immediate value is a public account of the requests the outlet says it received and the plans it says it is developing.
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Stories That Connect Readers
Being Patient is a journalism-focused platform covering Alzheimer’s disease, dementia and brain health. Kan said she founded it after her mother’s Alzheimer’s diagnosis and drew on her experience as a journalist to report on research and the experiences of patients and caregivers.
In her report, Kan pointed to the publication’s Journey to Diagnosis series, which began in late 2024. She said the stories had received more than 1.5 million views on Facebook and TikTok. That figure is a platform-specific view count reported by Being Patient; the article does not give a time window, unique audience count or comparison baseline.
Kan also cited Karen Sandone, whose husband was diagnosed with younger-onset Alzheimer’s at 55. Sandone told Being Patient that she and three other women started a support group, Surviving the Now, which attracted more than 400 participants over two months, mostly through social media. The example is presented as one group’s experience, not a forecast of participation in future Being Patient programs.
““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, quoted in Deborah Kan’s Being Patient report
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Scope of Reader Feedback
Being Patient did not report how many people replied, how the emails were collected or whether respondents represent its broader readership. The descriptions of the “largest group” and “almost as many” are Kan’s account of the messages, without counts or a stated method for categorizing them. The report therefore documents requests received by the publication, not a representative assessment of public demand.
The publication also did not provide launch dates, budgets, eligibility rules or operating details for its planned 2027 resources. Its statements about making it easier to find clinical trials and understand home-care and assisted-living options describe intentions; the article does not say that these services are currently available or explain how they will be delivered.
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Being Patient’s 2027 Plans
Kan said Being Patient is developing plans for 2027 that include help finding clinical trials and clearer information about home care and assisted living. She described these as work in progress and said connecting readers with one another would remain central. The report gives no further schedule or product details, so readers will need to wait for the publication to announce what will launch and when.
Kan also invited people living with a diagnosis or caring for someone who is to share how they reached that point by contacting Being Patient’s Ana. That invitation offers a way for readers to contribute stories; it is separate from the planned services, whose scope and availability have not yet been specified.
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Key Questions
What did Being Patient readers ask for?
Kan said readers requested guidance on care costs, home care, moving, risk and testing, as well as caregiving challenges, research and clinical trials. Many also asked to connect with peers or support groups.
Was the reader feedback a formal survey?
The report describes an invitation to email the publication with three requests. It gives no respondent total or survey methodology, so it should be read as reader correspondence, not as a representative poll.
What does Being Patient plan for 2027?
Kan said the publication is developing resources to help people find clinical trials and understand home-care and assisted-living options. Specific launch dates and service details were not provided.
How many views did the diagnosis stories receive?
Kan reported more than 1.5 million views on Facebook and TikTok for the Journey to Diagnosis stories, which began in late 2024. The report does not state the measurement period, unique audience or comparison baseline.
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