Finding Each Other: What You Told Us You Need From Being Patient

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Being Patient founder Deborah Kan says readers responding to a request for feedback asked for practical guidance on care costs, dementia risk and clinical trials. Many also said they want to connect with people facing similar diagnoses, caregiving responsibilities or genetic risk. The outlet says it plans to expand its resources in 2027.

Being Patient founder Deborah Kan says readers who replied to her request for feedback want practical guidance on dementia care and risk, as well as ways to connect with others facing similar circumstances. In a letter published by the dementia news platform, Kan said the responses will inform its coverage and services, with expanded resources planned for 2027.

Kan said she asked readers to reply with the three things they most want help with. Responses focused heavily on the period after a diagnosis, when families may be trying to make care decisions without a clear plan. Readers asked how to pay for care with limited savings or no long-term care insurance, whether Medicare or the Department of Veterans Affairs could help cover care at home, and when a family might need to move from a longtime home. They also wanted guidance on preparing for later stages of dementia.

Other requests concerned personal risk and testing, including questions from people who have watched a parent live with dementia or learned they carry the ApoE4 gene. Readers also asked for help with recurring day-to-day situations, such as responding to repeated questions, and for continued reporting on research—especially how to identify recruiting clinical trials and interpret their information.

Kan said many readers also wanted to find people with similar experiences. Requests came from people in early stages of illness, caregivers looking for support groups, and people with a genetic risk but no symptoms who described feeling alone. She said Being Patient is developing resources on clinical trials and care options, including home care and assisted living, for a planned 2027 expansion.

Readers Ask for Guidance and Community

The responses point to needs that extend beyond learning about dementia research: readers are also seeking usable help with care decisions and relationships with people who understand their situation. Questions about paying for care, housing and support are closely tied to daily family planning, while requests from people concerned about inherited risk show that uncertainty can affect people before symptoms appear.

Being Patient’s letter describes an editorial response, not a survey of all people affected by dementia. Still, the requests give a direct account of what some of its readers want from the outlet. Kan’s stated plans could shape what the platform offers, but the letter does not provide a launch schedule or details of specific services beyond a broad 2027 goal.

Stories That Build Connections

Kan said a text from Luke Davis, who was diagnosed with Alzheimer’s in April 2023 shortly before his 69th birthday, helped bring the reader requests into focus. Davis told her he had connected with people interviewed by Being Patient and used those relationships to develop advocacy work. He said his own advocacy began after he posted a short selfie video on the platform’s Facebook page.

Kan also pointed to Surviving the Now, a support group started by Karen Sandone and three other women. Sandone’s husband, Anthony, was diagnosed with younger-onset Alzheimer’s at 55. Kan said the group attracted more than 400 participants over two months, almost all through social media. Being Patient’s Journey to Diagnosis series began in late 2024; Kan said its stories have received more than 1.5 million views on Facebook and TikTok combined. These figures were supplied in her letter, which did not give a measurement method or a separate breakdown by platform.

““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, as quoted in Deborah Kan’s letter

Plans Still Need Specifics

Kan’s letter does not specify which resources will launch in 2027, when they will be available, or whether they will be free. It also does not set out how the platform will help readers find local, in-person groups, assess care costs or locate suitable clinical trials.

The reader responses are presented in Kan’s account; the letter gives no total number of replies, demographic information or method for determining how common each request was. Its examples should not be read as representative data about all patients, caregivers or people with genetic risk. Medicare, VA coverage and individual care options depend on circumstances, and the letter does not answer readers’ specific eligibility questions.

Being Patient’s 2027 Plans

Kan said Being Patient is working on plans to expand its brain health and dementia offerings in 2027, including making information about clinical trials and care options easier to find. She did not announce launch dates or detailed product features. The outlet also invited people living with a diagnosis or caring for someone who is to share their experiences with its staff, which could inform future reporting.

Key Questions

What did Being Patient readers ask for?

Readers asked for help with care costs, home and residential care choices, dementia risk, testing, daily caregiving challenges and clinical trials. Many also wanted to meet people with similar experiences.

What is Being Patient planning for 2027?

Founder Deborah Kan said the platform is developing expanded resources on brain health, dementia, clinical trials and care options. The letter does not give launch dates or detailed descriptions.

How did Luke Davis connect with others?

Davis said he reached out to people featured in Being Patient stories. He also said a short video posted on the platform’s Facebook page helped lead to advocacy work.

Do the reader responses represent all people affected by dementia?

That is not established. Kan shared themes from replies to her request but did not report the number of responses or describe a representative survey. The account reflects Being Patient readers who chose to respond.

Source: rss