‘Before the Ashes Fall’: the story behind the book and the movie in development about dementia

Editor’s Note: The author of the post below, David Serafine, is a corporate security professional in the US. He is not like most of our Readers, a professional in healthcare technology or social care. What compelled him to write a novel about a father and son, and a family affected by the onset of Alzheimer’s Disease, is his own family’s story. We deal with dementia as professionals, but it has also touched and affected our family lives, and in many cases, our work lives. 

David reached out to me through a post on LinkedIn and after some discussion, I have decided to share his message with you. He and his production team are now reaching out to people like us to find financing for a film treatment, to be shot in Western New York State. Through the film, they will tell not only a story, but also to use the film to promote education and societal awareness, especially among minority and underserved communities heavily impacted by this disease.

Through our networks and our companies, you may know a funder, or funders, who are interested in backing this cause. More information on the production is attached (Release–PDF). You may contact David at serafinedavid@gmail.com, phone 512.571.0418, or via LinkedIn .


Before the Ashes Fall by David Serafine

I first encountered Dementia in June 2016.  It was my wife’s grandfather, a sturdy and tough as nails Texas farmer, who was diagnosed with Alzheimer’s.   The man’s diagnosis came only a  year removed from tending crops beneath the relentless noon sun while seamlessly conversing with a razor-sharp precision. “And we need to hide his truck keys for good”. The words, stinging with an exactness and finality, didn’t quite measure up.  The man still looked normal.

One year later, I observed half of the same man blankly staring at a birthday cake, not realizing it was his. The celebration carried on around him, with each attendee recalling stories of his life. I stared hard at his face, almost willing a quiver or smile, anything to suggest the words resonated. Nothing moved. Finally, I noticed his jutting collarbones which resembled a cheap wooden hanger. My eyes traced the sharp rise and fall around his shoulders and the blanched fabric which hung from them.

I contemplated whether Alzheimer’s solely left this wake of damage. Or, was it exacerbated by his daughter’s own Frontotemporal Dementia diagnosis, relegating her final days to a Memory Care Facility?  I never knew the answer as two months later, the man succumbed to Alzheimer’s complications.  To this day, his daughter was never told that he died.   That type of message, with a woman in her condition,  could be a potential catalyst for further emotional distress. 

Sometime during that journey, I wrote a fictional novel called ‘Before the Ashes Fall’.   In short, the novel is a race for “Love, Forgiveness, and Redemption” between a father and son beneath the cloud of Alzheimer’s. The process was as equally heartbreaking as cathartic. I mostly bled and cried into pages for a year, completed it, and put it to bed.

However, the book elicited correspondence from Malaysia, Ireland, Brazil, and Chile. The messages always began the same: “I had a (insert family member) die from various forms of Dementia.  Thank you for writing this story”. Two observations became clear over time. First, ‘Dementia’ didn’t stay in lanes, either geographically or demographically.  It was global and touched everyone either directly or indirectly.

Secondly, and arguably the crueler facet, is the insidious nature of Dementia.  In many circumstances, the readers’ initially described  Dementia as a ‘normal’ part of aging.  It wasn’t until an unequivocal tipping point- “my husband left the stovetop gas on’’-that it was no longer ‘normal’. That same moment generated guilt within the de facto caretaker (spouse, daughter, etc.) of what could have been prevented.

I researched the diseases of Dementia -Alzheimer’s is but one diagnosis and it alone will cost over $1 trillion (globally) in 2020 alone.  I also learned life choices and even traumatic events had a dramatic impact on the diseases’ progression.  Those two points are the most critical: we have some control and hope with increased awareness.

In July of 2020,  my book was adapted for film by a multiple award-winning Director. The story and approach are unique, unlike the other Dementia-based films. As we will target 60 global film festivals, three primary goals materialized.

First, and the most unique aspect of the approach, is our desire to facilitate pragmatic and current medical forums.  The engagements will include not only allopathic guidance but more importantly, non-allopathic guidance.  We seek to educate communities on life choices – diet, exercise, early testing before the disease has advanced. There are informed choices we can make that can delay and lessen the impact of Dementia. This is least understood globally.

Secondly, we will use film and outreach to galvanize communities.  A search of Dementia-themed films will yield 2  most recognizable (Still Alice and The Notebook).  Our film will feature a different demographic, one illustrating the ‘absence of lanes’ with the disease.  This will be represented in the cast, crew, and artwork produced by local Dementia patients.

These goals have been welcomed by medical practitioners, podcasters, and Corporate Social Responsibility Executives.  In addition to a strong storyline, we believe film fans will sense a collective ownership of this film during its production and engagement in their communities.   Additionally, it’s supportive and empowering to overcome tragedy alongside others, particularly those who strive for a better future.

Finally, and unique to the film industry, we seek to re-invest 50% of all profits into Dementia-related awareness campaigns.  If funded, we believe “Before the Ashes Fall” has a 3X delivery back into the programs we seek to support.

“Before the Ashes Fall” is a fiscally sponsored film through the Film Collaborative and individual or corporate donations are tax-deductible.   It’s an amazing opportunity to shape the future for current and generations to come, all desiring the same goal: a cure for Alzheimer’s. 

[More information on the production here: PDF]

Ultrasound to break up brain amyloid plaques moving to human trials in 2019

Somewhat outside of telecare, but inside our concern with the health of older people, is the exciting news of a novel ultrasound treatment to break up the amyloid plaques in the brain that may be the cause of many dementias and Alzheimer’s Disease. Initially developed at the University of Queensland in 2015, the original objective was to open the blood-brain barrier to facilitate antibody treatment for dementia. Researchers found that in tests on mice, the ultrasound ablation cleared the plaques without any further drugs. Later tests found that the treatment clears both “toxic proteins and restores memory function safely in several different rodent models, including an older mouse model designed to resemble human brains of 80 to 90 years old.” 

Australian government funding is key in helping accelerate development. The first stage in human trials is a phase 1 safety trial, kicking off later in 2019. 

While at least a decade in the future if all goes well in clinical trials, one of the researchers, Jürgen Götz, is thinking larger, towards future personal ultrasound devices which could be used for personal treatment or prevention. New Atlas

An earlier study referenced in MedPageToday summarized results and concerns with a Canadian study. 

PARO therapy robot tested, cleared by NHS for — hygiene

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2018/03/PARO.jpg” thumb_width=”150″ /]PARO, the therapeutic robot seal developed in Japan by Professor Takanori Shibata for socialization use with geriatric dementia patients, is moving closer to being approved for use in the UK. It passed a cleaning and hygiene test conducted over nine months by Dr. Kathy Martyn, principal lecturer in the University’s School of Health Sciences, on a 10-bed dementia ward run by Sussex Partnership NHS Foundation Trust. The findings were that PARO was safe within the hospital setting for an acute care dementia unit.

TTA Editors have been covering PARO since 2010 (!) and despite the qualms in certain quarters [TTA 22 June 2010 ], unsurprisingly (to this Editor) the research has shown that it lowers stress and anxiety, promotes social interaction, facilitates emotional expression, and improves mood and speech fluency. Digital Health News (Picture from Toronto Star)

Successful Aging 2030: how far we haven’t come, how far we have to go

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2017/05/dhealth2017_300x75_2.png” thumb_width=”200″ /]This Editor attended last Wednesday’s (10 May) d.Health Summit 2017–Successful Aging 2030, sponsored by the University of Rochester and West Health. It was an expansive, well-organized and attended seminar at the New York Academy of Sciences at the impressive new 7 World Trade Center. Panels covered economic, housing, health outcomes, government policy, technology innovation, and investing factors key to one central fact: that in the US, nearly 20 percent of the population will be over 65 by 2030. Worldwide, the numbers are already much higher as of 2015: Japan (26 percent), Italy (22), Greece, Germany, Portugal (21) with nearly all of Europe already near that magic number (World Bank).

What was dispiriting to this Editor was that in her now 11 years in related health tech (telehealth and telecare), the status of many issues were the same as in 2006. The inadequacy of ‘aging in place’ supports and “assisted living”; a culture that brutally devalues people as they get older starting after 50; a belief that whiz-bang technology will fix it, but it doesn’t; the non-recognition of ‘aging-consumer-driven healthcare’; the lack of attention from investors because aging is not glamorous–are still there. What was hopeful? The candid recognition of these factors and the open discussion around them. There was a blunt admission expressed somewhat differently by two speakers, June Fisher MD of UC Berkeley and Charlotte Yeh of AARP, that without co-designing solutions with older people, we will get nowhere, and that imposing ‘fixes’ from the outside hasn’t and isn’t going to work. We also have a new middle age of 55-75, but the work market and employers have not adapted to that lengthening of productiveness, with the ‘pasture’ of retirement still pegged theoretically at 65.

Highlights of each panel:

The Longevity Economy, or the Silver Economy, was estimated by Merrill Lynch‘s Surya Kolluri at $7 trillion, with a surprising 90 percent of package goods spending done by 65+, and not just that but also areas such as home improvement. But healthcare spending is about 200 percent over the population average, and caregiving factors into that as well. There are profit opportunities for companies in this market, including developing/future areas such as robotics. (more…)

VR system integrating cognitive, physical training to reduce falls by 50 percent

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2017/03/vr-parkinsons-672×372.jpg” thumb_width=”175″ /]A virtual reality (VR) treadmill system has been developed that improves both muscle strength, coordination, and cognitive abilities to prevent falls in patients with Parkinson’s disease and dementia. Researcher Jeff Hausdorff at Tel Aviv University-Sourasky Medical Center is integrating traditional therapies that concentrate on developing muscle strength, balance and gait with cognitive factors for fall prevention: motor planning, attention, executive control, and judgment training. In a recent study of 282 patients in matched therapy groups (VR+treadmill versus treadmill alone), those who participated in the VR group fell 50 percent less after six months. The biggest improvement was seen in Parkinson’s patients. Video is below. (Photo and video from Center for the Study of Movement Cognition and Mobility). ApplySci/MIT

One Caring Team testing virtual reality for dementia and depression treatment, relief

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2016/11/vr-elderly-2_wide-af9c501d8fea7232e366e38b699ee41ee4040334-s1500-c85.jpg” thumb_width=”250″ /]A San Francisco-based company, One Caring Team, is visiting Bay Area seniors with a treatment that is also a treat–virtual reality headsets that recreate a beach or other relaxing environment. VR has been used with Microsoft Kinect in game-playing in assisted living communities, but the physician-founder Sonya Kim is seeking to give a break most to those older people with dementia or depression. They no longer can travel and their world has grown very small. VR gives them an opportunity to hear and see things they haven’t in a long time, if ever. Versions being tested have both a VR picture, narration on screen and audio; versions for dementia patients skip written ‘bubbles’. The point is to have the clients/patients feel safe, relaxed and welcomed. Some of the results have been that patients start to speak, interact with the pictures intuitively and be more alert, with lasting effects between VR visits. Formal studies have been done in other settings for pain management and for rehab, but this is a new company and concept. One problem is cost: $850 for each Samsung Gear VR headset plus the Galaxy smartphone, but if anything help on VR and social funding is easy to find the Bay Area; founder of the Virtual World Society, the University of Washington’s virtual interface pioneer Dr. Tom Furness, is now One Caring Team’s acting chief technology officer. Washington Post, NPR, F6S.com (Photo from One Caring Team via NPR)

A virtual reality version of dementia

[grow_thumb image=”http://telecareaware.com/wp-content/uploads/2015/08/virtual-dementia-experience@2x.jpg” thumb_width=”175″ /]The Virtual Dementia Experience simulates for caregivers and other medical professionals the visual distortions typically suffered by those with dementia. Designed by four graduates of Australia’s Swinburne University, it was built on the Unreal Game Engine to run on Microsoft Kinect or Oculus Rift VR. VDE recently won the World Citizenship Award at Microsoft’s Imagine Cup. It is is being developed commercially by Swinburne spin-off company Opaque Multimedia. (It would have been neat to have a video simulation on the website.) It reminds this Editor of a training developed by Second Wind Dreams which more fully simulates the visual, hearing, perceptual and behavioral effects of dementia to heighten sensitivity among caregivers.  Gizmag

Study: success of behavioral telehealth for caregivers

Caregivers for those with neurocognitive disorders (Alzheimer’s disease, dementias and other related progressive diseases) have unique, long-term stressors that lead to increased risk for distress, depression, and negative health outcomes. Conventional approaches through support groups and community based programs are helpful but not adequate, especially for those living in rural areas at a distance from care. This study of 74 women caregivers with mild to moderate depression tested two approaches: a 14-week behavioral intervention using video instructional materials (DVD/VHS), in-person telephone coaching in behavioral management and reinforcing workbook materials, with pleasant events scheduling and relaxation, versus a basic education guide and limited telephone support. The first approach was a statistical improvement over the second, easing caregiver depression and helping in their managing patient behavior. Results were maintained six months after the program ended. “Distance-based interventions (e.g., telephone, video, Internet, and bibliotherapy) hold promise for family carers, especially those living in rural or metropolitan areas with limited transportation.” Now if we could add in some tablet based interactive support? A telehealth behavioral coaching intervention for neurocognitive disorder family carers (International Journal of Geriatric Psychiatry)  Hat tip to Mike Clark via Twitter

10th Anniversary Article 1: The Next Ten Years of Telecare

This year, on the 10th Anniversary of Telehealth and Telecare Aware, we have invited industry leaders nominated by our readers to reflect on the past ten years and, if they wish, to speculate about the next ten. Here is the first article, with a UK focus, by Dr Kevin Doughty.

Many of us are frustrated at how little progress there has been in the deployment and acceptability of telecare during the past decade. Yet, despite warnings that an ageing population was about to bankrupt the NHS (and health insurance schemes elsewhere in the world), and that access to social care for older people was being withdrawn at such a rate that it could only be afforded by the wealthiest in society, our health and social care systems have just about survived.

But this can’t go on, and in England over the past 12 months: (more…)

The underweight may be at higher risk of dementia: UK study

With a personal connection. This study, just released in The Lancet, has created headlines because it contradicts previous research and conventional wisdom that the obese are at the highest risk for dementia. Of nearly 2 million aged 40+ (median age 55), developed from the UK Clinical Practice Research Datalink (CPRD) over 15 years and screened for body mass index (BMI), the highest risk–34 percent– was found among those with a BMI lower than 20, which would include low-normal and underweight, versus those in a normal weight range with BMI 20-25 percent. The very obese, with BMI over 40, had a 29 percent reduced risk versus the normal range. This leads of course to why this is, for others to study. So it looks like you should eat right and exercise, but you don’t have to be a social X-ray. Also The Telegraph, The Guardian. Cheers to one of the researchers, statistician Michelle E Johnson, MSc, of OXON Epidemiology, London–the daughter of TTA founder and EIC Emeritus Steve Hards.

ELabNYC Pitch Day

10 April, Microsoft HQ, NYC

The Entrepreneurship Lab NYC (ELabNYC) presented its second annual class of companies to nearly 200 life science funders, foundations, pharmaceutical companies, healthcare organizations, universities and the occasional Editor. Of the cohort of 19 companies finishing the three-month program, 56% are now funded and 25% had first customer revenue by the end of the program. Each company pitched for five minutes on its concept, its current state of advancement (including pilots/customers), its team and a funding timeline. This Editor will concentrate on the five companies with a digital health component; she was intrigued by their diversity and focus on difficult problems of compliance and diagnosis, especially dementia and concussion. (more…)

One pearl found at the Wearable Technology Show 2014 (UK)

They say if you open enough oysters you’ll find a pearl, which was certainly true of the Wearable Technology Show 2014  held in Olympia on March 18-19. Perhaps I should have paid up to be a delegate, because to me the exhibition was fairly underwhelming with little to excite. Clearly some of the exhibitors felt that way too, as at least a couple of booths had been deserted by midday on the second day. There was one star though.

Unfortunately not all the exhibitors were recorded in the “Exhibitors A-Z” in the show guide so as I had been relying on that for writing this report, I do not have a complete list. For those wondering what they missed, here are a selection (more…)

Designing housing for the cognitively impaired–where’s the telecare?

Steve Moran’s Senior Housing Forum is hosting a lively discussion on designing communities for what this Editor would term the cognitively impaired, euphemistically called ‘memory care’ here in the States, then often bluntly categorized as dementia care. This concentrates on one CEO’s journey in designing a new memory care community, The Cottages at Cedar Run (Wisconsin) and how he utilized ideas developed in the US (Eden Alternative, Green Houses — Bill Thomas’ work, TTA 30 July) as well as the Dutch Dementia Village [TA 22 Dec 12] The architect’s video still strikes this Editor as full of nice touches (the courtyard a la the Dutch, but not as spacious or a center of activity; the padded window seats) but still institutional feeling (the cottages have a nice look but need more individualization to aid resident identification; how a resident/family can personalize the cottage); all in the right direction. The comments expand upon many points, but what is really missing here is the integration of technology(more…)

The long-term care revolution: two papers

Written for the Technology Strategy Board and published by the Housing Learning & Improvement Network, the purpose of the main study is to “outline the case for a revolution in long term care all to be set in a time scale of 2012, 2020 and 2050. This includes evidence about the views of older people and their carers in the UK, lessons from abroad and the implications for industry/providers.” It is written as a ‘study of studies’ on a broadly-scoped problem; it focuses considerably on issues such as care provision, housing (including co-housing and communities) and putting the older person in more control of decisions, housing and tech design. Telehealth and telecare, while not the focus, have a hefty section (pages 32-41) but their conclusions will not be a huge surprise to our readers such as expanding inexpensive, simple assistive technologies, the need for more research and better design. The fact it is comparative is extremely helpful for those who want to see beyond borders, and there is a large section on ethical issues which is certainly unusual in studies of this type.  We thank the lead author, Professor Anthea Tinker, Institute of Gerontology, Department of Social Science, Health and Medicine, King’s College London, for providing information on and the PDFs of the studies. Assisted Living Platform – The Long Term Care Revolution and A study of innovatory models to support older people with disabilities in the Netherlands

Another diagnostic for Alzheimers with impact on telehealth gains $2MM funding

Will a market of hundreds of millions be able to access these needed technologies?

Neurotrack, a computer-based cognitive program designed to pick up changes three to six years in advance of an official diagnosis of Alzheimer’s or dementia, gained Series A funding led by Founders’ Fund (Peter Thiel) and joined by Social+Capital Partnership plus several angel investors. Developed initially at Emory University with the technology part of a five year National Institutes of Health (NIH) study, it tests subjects on preference for repeat images versus novel images; a preference for repeat images may indicate a disturbance in the hippocampus area of the brain in completely asymptomatic subjects. However, you will not find it at a doctor’s office or a pharmacy kiosk near you soon. Its initial use will be in clinical trials for pharma companies developing drugs targeting early-stage dementias. The meaning for telehealth and telecare (more…)

An Alzheimer’s diagnosis test that could have profound telecare implications

Significant progress on early diagnosis of Alzheimer’s is reported today by Fierce Diagnostics.  The Cognoptix test involves a laser eye-scanning device and an ophthalmic ointment, according to their website, designed to spot telltale beta-amyloid proteins in the lens of the eye.

The excitement in the article is about the possibility of increasing drug sales; the ability to deploy drugs to delay progression of the disease would clearly be very important. However, whilst perhaps less commercially significant, there would be some huge benefits (more…)