TL;DR
Being Patient founder Deborah Kan says readers who responded to a request for feedback asked for help with care costs, planning after diagnosis, risk questions, research and daily caregiving. Many also wanted to connect with people in similar situations. The outlet says it plans to expand its resources in 2027, but has not specified a publication schedule or detailed services.
Being Patient founder Deborah Kan says readers who answered her request for feedback want more help with the practical and emotional challenges of Alzheimer’s and other dementia-related experiences, including care costs, planning after diagnosis, understanding research and finding peers. In a report published by the outlet, Kan said it is developing expanded brain-health and dementia resources for 2027, with connection among patients and caregivers a central focus.
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Kan said she asked readers to reply with the three things they most wanted help with, and received emails ranging from short lists to longer personal accounts. She said she was still responding to those messages when she wrote the report. The responses are an account of feedback sent to Being Patient; the report does not describe them as a representative survey or provide a total number of respondents.
Many readers asked about the period after a diagnosis, including how families can pay for care with little savings or no long-term care insurance, whether Medicare or the VA may help cover care at home, when to consider moving from a long-time home and how to prepare for later stages. Other requests concerned personal risk, including questions about the ApoE4 gene, when to seek testing, how to manage repeated questions during caregiving and how to identify clinical trials.
Kan said readers also repeatedly asked to meet others in comparable situations. That included people in early stages of a diagnosis, caregivers seeking support groups—preferably in person—and people who carry a genetic risk but have no symptoms. She cited reader Luke Davis, who said Being Patient interviews had helped him connect with people and pursue advocacy. The outlet says it is working on easier access to information about trials, home care and assisted living, though it did not provide a detailed launch plan.
Readers Seek Guidance and Peers
The requests point to needs that extend beyond understanding a diagnosis: families also face decisions about financing care, housing and future support, while people at different stages may want practical advice from those with similar experiences. The report does not establish how common these needs are across the wider dementia community, but it records them as recurring themes among the readers who contacted the publication.
Peer connection is a particular focus in Kan’s account. A diagnosis, caregiving role or perceived genetic risk can leave people looking for others who understand their circumstances. Being Patient presents its patient and caregiver stories as one route to those connections, while acknowledging through reader requests that people also want support groups and direct contact.
For readers, the planned expansion could mean more material on care options and research alongside personal stories. However, the report describes intentions rather than launched services. Details such as what resources will be available, who can use them and how they will be delivered remain unannounced.
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Stories That Led to Connections
Being Patient is a journalism-focused outlet covering Alzheimer’s, dementia and brain health. Kan said she founded it after her mother’s Alzheimer’s diagnosis, drawing on her background as a journalist to explain research and patient experiences. The report frames its reader outreach as part of the publication’s continuing effort to understand what its audience needs.
Kan described its Journey to Diagnosis stories as a way for people featured in the series to find one another and then reach others. She cited Karen Sandone, whose husband was diagnosed with younger-onset Alzheimer’s at 55. According to Kan, Sandone and three other women started the Surviving the Now support group, which attracted more than 400 participants over two months, almost all through social media.
Kan also reported that stories in the series, which began in late 2024, had received more than 1.5 million views on Facebook and TikTok combined. The figure is a platform-specific view count reported by Being Patient; the article provides no further breakdown or comparison. Davis, diagnosed in April 2023 shortly before his 69th birthday, said a short video he posted on the outlet’s Facebook page helped lead to later advocacy work.
““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 Being Patient’s report
Details Still Awaited
Kan’s report does not provide the number of people who replied to her request, a breakdown of their experiences or information about how responses were collected. The feedback should be understood as messages from Being Patient readers, not as a poll or a measure of the needs of all patients and caregivers.
The publication has not announced specific dates, formats or eligibility rules for the planned 2027 resources. It is also unclear whether the proposed help with clinical trials, home care and assisted living will take the form of guides, services, referrals or other material. The report does not say how readers will find in-person support groups or whether Being Patient will directly organize them.
Being Patient’s 2027 Plans
Kan said Being Patient is building plans for 2027 that include making it easier to learn about clinical trials, home care and assisted living. She described finding connections among people affected by dementia as a priority, but did not give launch dates or name specific products and programs.
The outlet also invited people living with a diagnosis or caring for someone who is to share their stories by contacting its staff. Kan said she was still working through reader messages. Further details about the 2027 plans, including how the proposed resources will respond to the requests, have not yet been provided.
Key Questions
What did Being Patient readers ask for?
Kan said readers asked about care costs, planning after diagnosis, genetic risk, caregiving challenges, clinical trials and connecting with people in similar situations.
Did Being Patient conduct a survey?
The report describes emails sent after Kan asked readers to share their three main needs. It gives no respondent total or survey method, so the responses should not be treated as a representative poll.
What does Being Patient plan for 2027?
Kan said the outlet is developing resources on brain health and dementia, including easier access to information about clinical trials, home care and assisted living. Specific formats and release dates have not been announced.
How did reader stories help people connect?
Kan said people featured in Being Patient’s Journey to Diagnosis stories went on to connect with others. She cited the Surviving the Now group, which she said drew more than 400 participants over two months, almost all through social media.
Source: rss
