“Being Patient” community platform – essential clarity, expertise and compassion for Alzheimer’s Jem Golden

Special thanks to Gráinne Cumbers

Early in June this year, the US Food & Drugs Administration (FDA) approved the first Alzheimer’s treatment in nearly twenty years known generically as aducanumab and marketed under the brand name Aduhelm manufactured by Biogen.

Scientific controversies are associated with the clinical trials of this Alzheimer’s drug with conflicting opinions and data concerning the efficacy of Biogen’s (and similar therapies) that target the biomarker, meaning the characteristic by which a particular pathological or physiological process can be identified. In this case, targeting the beta-amyloid, a sticky compound that accumulates in the brain, disrupting communication between brain cells and eventually killing them. Targeting biomarkers has not been applied before to dementia nor Alzheimer’s, nor in fact for most of neurology or psychiatry. 

As I do frequently, in order to be better informed on the latest developments in Alzheimer’s, I logged onto the Being Patient and was directed to an online series of talks with two experts. I was immediately brought up to speed on the topic with an in-depth video interview giving a nuanced and differing perspective at this early stage on the benefits in prescribing Aduhelm; based on the trials conducted so far both experts characterised it as appropriate only for those experiencing early Alzheimer’s [and] building up amyloid. 

Being Patient was founded by Deborah Kan based in San Francisco after her mother’s Alzheimer’s disease diagnosis to reinvent how people get accurate information on long-term illness, pioneering a community-driven editorial strategy. Kan is executive editor of Being Patient leading a team of seven,prior to which, she was an award-winning journalist and media entrepreneur with five years of experience as an executive producer for the Wall Street Journal where her focus was on multi-media expansion throughout Asia. 

“When my mother was diagnosed I was asking myself and many others ‘What does Alzheimer’s really mean? ‘What have we learnt in the last ten years or so about this disease that can be helpful to people like me in this situation? Why isn’t there more expert information publicly available to non-specialists and what would be the best forum to do that? 

Answering these basic but hugely important questions was my inspiration. I was especially conscious of the need to properly support carers of people with Alzheimer’s who were left very frustrated and unable to fulfil their role to the best of their capabilities because they simply did not have access to the right knowledge to do so. Even many doctors lack expertise to best advise patients and their carers”, says Kan. 

Being Patient expert interviews and articles are posted once or twice a week and in Kan’s words: “… connect people directly to the science community; hundreds of experts have been interviewed by us to date and by doing this we stay abreast of the research and explain it. Our network is encouraged to participate, to ask questions directly. 

We also prioritise the need to value and channel the patient’s (and their carers’) perspective. There still exists a strong stigma around diagnosis and symptoms and we want to alleviate this distress by sharing stories and the voices of people at different stages of the disease,” Kan states passionately. 

I particularly appreciate hearing from this perspective. One recent article “I Am The Very Same Person That You Knew Before:” How To Talk To a Person With Dementia outlined that while dementia’s symptoms manifest differently and at different paces for every person who experiences it, many people living with dementia share the experience of having to deal with assumptions, discrimination and discomfort from others.  

As one patient explains in the article: “As soon as you tell someone you have a dementia diagnosis, especially if it’s somebody you haven’t seen for a long time who may not know or even a stranger, their automatic assumption is that you’re in the latter of progression of the disease, that you’re not capable of doing things that you used to do before, that you’re not capable of learning new things…”. Navigating these misconceptions from others naturally has a negative impact on a diagnosed person’s energy levels, self-esteem and quality of life.

Additionally, Being Patient informs non-specialists on potentially aggravating long-term factors for Alzheimer’s, which is hugely valuable information for those not working in the field. For example, if a person is getting hypoglycaemia while sleeping, as many people are, this may suggest that they are entering a pre-diabetic stage, which needs to be addressed. 

A further factor that is important to be aware of, is the need for people with Alzheimer’s to be treated for oral bacteria, gingivitis, chronic inflammatory conditions. Also to take up treatments in order to alleviate oxygen desaturation at night, which experts identify as a likely contributor to cognitive decline among many other factors. Alongside alerting us to symptoms (and recommending preventative care treatments), Being Patient also provides clear, stimulating and practical ways to promote our ‘Brain Health’.

Understandably Alzheimer’s is a very fearful and to an extent even taboo subject for many, comparable to how cancer was viewed until recently but cancer is a much more openly discussed and less taboo disease now. We are also relatively in a ‘nascent phase’ in science for understanding Alzheimer’s multiple causes and treatments at all stages. Being Patient provides essential clarity, expertise and compassion to this complex, sensitive topic where it is needed. 

Sources for the article:

Interview with Deborah Kan, Executive Editor, Being Patient

Debbie LI Profile: https://www.dhirubhai.net/in/deborah-kan-36b2716/

“I Am The Very Same Person That You Knew Before:” How To Talk To a Person With Dementia

https://www.beingpatient.com/stigma-of-dementia-communication-lessons/ 

Q&A: Clinical Trial Investigators Respond to Aduhelm Approval

https://www.beingpatient.com/aducanumab-aduhelm-decision-lon-schneider-stephen-salloway/

Sleep-Based Interventions in Alzheimer’s Disease: Promising Approaches from Prevention to Treatment along the Disease Trajectory by Cardone et al

Published in Pharmaceuticals 2021, 14(4), 383; https://doi.org/10.3390/ph14040383