TL;DR
Turn quiet afternoons into listening time
- Thousands of audiobooks, podcasts and originals
- Listen on your phone, tablet or Echo — also offline
- Cancel anytime
Being Patient founder Deborah Kan says readers who responded to a request for their priorities want help with care costs, risk questions, daily caregiving and clinical trials. Many also asked to connect with people facing similar diagnoses or concerns; the publication says it plans expanded resources for 2027.
Being Patient founder Deborah Kan says readers who replied to her request for coverage priorities want practical guidance on dementia care, clearer information about clinical trials and, above all, ways to find others facing similar experiences. In a letter published by the Alzheimer’s and dementia news platform, Kan said the responses are shaping planned resources and reaffirmed that peer connection will remain central to its work.
Kan said she asked readers to email the three things they most wanted help with and received responses ranging from short lists to longer personal accounts. She described one large group of requests as focused on the period after diagnosis, when families may be trying to make a care plan. Readers asked how to pay for care with limited savings or no long-term-care insurance, and whether Medicare or the Department of Veterans Affairs might help with care at home. They also asked about moving from a long-time home and preparing for later stages of the disease.
Other responses raised questions about personal risk, including when to seek testing and how to evaluate advice after a parent’s dementia diagnosis or learning of an ApoE4 genetic variant. Readers also asked for help with repeated questions and other daily caregiving challenges, as well as continued reporting on dementia science and how to understand clinical trials recruiting participants. Kan said some respondents had cared for someone with dementia before receiving a diagnosis themselves, a perspective she wants the publication to cover.
Across these topics, Kan said many readers expressed a wish to connect with others. People in early stages of a diagnosis sought peers, caregivers requested support groups, and some people with genetic risk but no symptoms described feeling alone. The letter also highlighted Being Patient reader Luke Davis, who was diagnosed with Alzheimer’s in April 2023 shortly before his 69th birthday, and described how conversations with people featured by the publication led to connections and advocacy.
Peer Support Alongside Care Guidance
The responses point to needs that extend beyond learning about dementia: families may have to make financial, housing and care decisions while also dealing with uncertainty and daily demands. Readers’ requests show the value they place on information that addresses those decisions in practical terms, alongside reporting on research.
Connection is another part of that need. Kan said people at different points—from caregivers to those with a diagnosis or perceived genetic risk—asked for opportunities to meet peers. Support groups and conversations can offer a way to share experience, though the letter does not establish that every reader can access them or quantify their effects. Being Patient’s stated focus on helping people find each other reflects what respondents said they wanted, rather than a claim that peer contact resolves care or health challenges.
dementia caregiver practical guide daily care and behavior management book
As an affiliate, we earn on qualifying purchases.
As an affiliate, we earn on qualifying purchases.
Stories That Lead to Connections
Being Patient is a journalism-driven platform covering Alzheimer’s, dementia and brain health. Kan said she started it after her mother’s Alzheimer’s diagnosis, drawing on her background as a journalist. The letter links its current plans to the publication’s Journey to Diagnosis stories, which feature people’s experiences of reaching a diagnosis and living with it.
Kan cited Luke Davis’s account of turning a short video posted on Being Patient’s Facebook page into advocacy work, including work with the Alzheimer’s Association, lobbying in Texas and Washington, and involvement with Voices of Alzheimer’s. She also described Karen Sandone, whose husband was diagnosed with younger-onset Alzheimer’s at 55. Sandone and three other women started a support group, Surviving the Now; Kan said it drew more than 400 participants over two months, almost all through social media.
According to Kan, stories in the series have been viewed more than 1.5 million times on Facebook and TikTok since the series began in late 2024. That figure is the platform’s reported view count, not a measure of unique readers or evidence of outcomes.
““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 Being Patient letter
dementia care planning workbook finances Medicare VA benefits and long-term care
As an affiliate, we earn on qualifying purchases.
As an affiliate, we earn on qualifying purchases.
Details of Planned Resources Pending
Kan said Being Patient is building new offerings for 2027, including help finding clinical trials and information about home care and assisted living. The letter does not specify launch dates, how the services will work, whether they will be available in every location, or what sources and eligibility criteria will guide trial matching.
The publication’s description of reader priorities reflects the replies Kan received, but the letter gives no total number of respondents or method for assessing how representative they are of its audience. It also does not detail what support groups or other peer-connection options will be created. Questions about Medicare and VA coverage were reported as reader requests; the letter itself does not answer individual eligibility or coverage questions.
Alzheimer's caregiver support group workbook communication and coping strategies
As an affiliate, we earn on qualifying purchases.
As an affiliate, we earn on qualifying purchases.
Being Patient Plans for 2027
Kan said Being Patient is developing expanded brain-health and dementia resources for 2027, with planned assistance related to clinical trials, home care and assisted living. The publication has not announced specific release dates or service details in the letter.
Being Patient also invited people living with a diagnosis or caring for someone who is to share how they reached that point, directing them to contact Ana at the email address listed in the original publication. Kan said she is still responding to reader emails. Further reporting and program details will clarify how the publication intends to address the requests it received.
dementia home safety products medication organizer and daily activity aids
As an affiliate, we earn on qualifying purchases.
As an affiliate, we earn on qualifying purchases.
Key Questions
What did Being Patient readers ask for?
Readers asked for guidance on paying for care, housing decisions, caregiving, dementia risk and clinical trials. Many also wanted to connect with people facing similar circumstances.
What new resources does Being Patient plan?
Founder Deborah Kan said the publication is developing resources for 2027 related to finding clinical trials and understanding home-care and assisted-living options. Specific formats and launch dates were not provided.
How did Luke Davis connect with other people?
Davis said he reached out to people featured by Being Patient after sharing his own story. Kan reported that these conversations helped him build connections and become involved in Alzheimer’s advocacy.
Does the letter answer questions about Medicare or VA coverage?
No. Kan reported that readers asked whether Medicare or the VA could help pay for home care, but the letter does not give coverage guidance or address individual eligibility.
Source: rss
Halloween Picks
halloween
As an affiliate, we earn on qualifying purchases.
