#DefyDementia

This week at SXSW I was thrilled to be on a #DefyDementia panel.

Dr. Allison Sekuler chief scientist of Baycrest geriatric hospital and the Centre for Aging + Brain Health Innovation moderated the discussion.

Joining me were two world leaders in aging innovation & emerging technologies in cognitive health:

?? Walter Greenleaf, PhD, neuroscientist and "OG"Virtual Reality in health expert based out of Stanford University's Virtual Human Interaction Lab

? David Lindeman, director of the center for technology and aging at the Center for Information Technology Research in the Interest of Society at University of California, Berkeley

To date the tools to enable early detection or accurate (and timely) diagnosis of dementia have been crude, expensive, and not accessible to the population en masse. For example, we currently use long questionnaires often requiring a neurologist to mediate, and PET scans to detect disease. On the treatment side, options have been even slimmer, with the first ever immunotherapy coming onto the market a couple years ago with modest impact, and strong side effects that require regular MRI scans to monitor.

However, the panel agreed we are at an inflection point given what we see in our work every day. The 1 hour discussion uncovered several tech solutions, care models and policy innovations, from prevention through to end of life.

I recap here a few notable examples of technologies in the field or in development, many of which are combining in creative ways to amplify impact and reach:

PREVENTION

• Smarter and more democratized ways to get at key modifiable risk factors that lead to 40%+ of the onset of dementia, such as using better tools to screen for hearing loss or sleep deficit
• A vaccine is in clinical trials
• Intelligent risk stratification based on multiple data inputs, well beyond family history eg genetics, demographics, digital biomarkers, clinical biomarkers

DETECTION & DIAGNOSIS

• Digital biomarkers to detect signs of cognitive decline earlier and with more sophistication, such as with video games, virtual reality experiences and speech patterns (enabled by AI)
• Easier to access clinical biomarkers such as in layers of the retina
• EEG implants in the ear or worn on the head to detect brain activity patterns while awake or sleeping [see demo in image below!]

TREATMENT

• In clinic tools: Many anti-amyloid immunotherapies, as well as Tau protein therapies are in the collective pharma pipeline
• Home-based tools: Immersive experiences in virtual reality, video games, and music therapy - alone or in combination, coupled to real time modulation using AI + the above brain monitoring tools
• Home-based therapy (still in clinical trials): Gamma waves to restore brain action, simply by wearing a headset for 1 hr a day

MANAGING WHILE LIVING WITH DEMENTIA

• De-institutionalized, modern living models such as connected dementia villages
• Modernized memory care facilities and day programs that embed many of the tools and therapies above
• Innovations for the family unit such as supports for family caregivers, often funded by the employer or the state
• Social robots (companionship), helper robots or bots (medications, falls, other monitoring), home safety, fraud detection, etc.

For any of the above tech-enabled solutions the panel noted that a key success factor is authentic co-design of all aspects of the solution and its deployment. This means including the person living with dementia & their family caregivers in all stages of co-design to ensure their full set of values and needs are met, well beyond addressing cognitive or physical decline. For example, driving the design based on relative desires to maximize independence, dignity, agency, consent, social resilience, safety/security, financial security and more.

We collectively felt a legitimate sense of hope that Dementia does not need be the social and economic sinkhole that it is currently projected to be. In many ways, the parallels between dementia and cancer control are striking - the latter disease is no longer an automatic death sentence in many cases, and some forms of cancer (like cervical) will soon be eradicated. Further, cancer care innovation now focuses on the full scope of needs of the family unit (the person living with disease and their family caregivers), well beyond physical treatment. Dementia care is nearly identical, especially in the requirement for integrating needs, values and expectations of the family unit into all aspects of the design of the solutions. If this is done, we really can defy dementia - both reducing its onset, and making life with dementia a manageable condition for everyone impacted.