Alzheimer’s and Dementia: Staying Informed, Issue 1

Message from Principal Investigator

Scott A. Small, MD
Boris and Rose Katz Professor of Neurology
Director of the Alzheimer’s Disease Research Center
Columbia University Irving Medical Center

“Integrative biology is arduous, and requires an appreciation and enduring commitment, not only by biomedical scientists, but also funding agencies and private foundations.  I am approached by many private foundations that have expressed interest in joining the effort—a crusade I would say– to find the cause and ultimately the cure for Alzheimer’s disease.  Often, however, foundations in their eagerness are looking for quick and easy fixes, and are not truly committed to the cause.    After working a year with the leadership at AMF, I have discovered that they are one of those rare private foundation that have an intuitive appreciation of the logic of integrative biology, and are deeply committed to the process of discovery, and ultimately, the cure of Alzheimer’s disease.

Without minimizing the wonders of biology and the miracle which is the human body, medical doctors are taught to think like mechanics.  When presented with a disease, we know that we need to first isolate the primary biological defect that drives the disease, its root cause, before we can even consider effective interventions.  No physician, even the loftiest among us, would object to the mechanical and simple truism, ‘you can’t fix something if you don’t know what’s broken.’

History has validated this basic biomedical truth, although we are often humbled by how long it takes to find a cure even once we discover the root cause and what is biologically broken.

With all the transformative advances in biomedical science and technology, it might surprise that for some diseases, we are only now beginning to figure out their root cause.  Not only for rare diseases, for which we can try and forgive our ignorance because of lack of interest and a dearth of funds; but this is also true for what has emerged as one of the most common and dreaded disorders of our era:  Alzheimer’s disease.

There are many reasons why the root cause of Alzheimer’s disease has eluded us, and I spend hours deliberating over these reasons when I teach graduate students, medical students, and neurologists in training.  In a nutshell, the reason is because for some diseases, typified by Alzheimer’s disease, we can’t rely on one singular biological finding as a eureka moment—say, the study of our genes (called molecular biology) or the study of cells (called cell biology).  The root cause of complex disorders like Alzheimer’s disease only reveals itself when we integrate and synthesize an array of clues from multiple biological disciplines.    This approach is called ‘integrative biology’.

So, in Alzheimer’s disease there is no quick and easy way to find out what’s broken, and there are certainly no quick and easy fixes.”

Dr. Scott Small is the Director of the Alzheimer’s Disease Research Center at Columbia University’s Medical School in New York. Aging Mind Foundation was honored to award Dr. Small with a $500,000 grant to investigate the cause of Cerebro-spinal fluid elevation of the protein Tau in Alzheimer’s disease and to further research on the trafficking hypothesis.

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Dear Doctor…

Dear Doctor,
My sister was diagnosed with Alzheimer’s five years ago. Our family is heartbroken to see the ways that this horrible disease has affected my sister. What is my risk for also developing Alzheimer’s disease?
Sincerely, Heather

Dear Heather,

This is one of the most common questions asked.  It is, however, the one that sometimes takes the longest to answer.  “Deterministic” genes that cause a disease differ from “probabilistic” ones that influence the risk of getting a disease.  A balance scale, I have found, can illustrate this difference. If a disease happens when your carefully calibrated health scale tilts off balance, then a deterministic gene contains a mutation that is heavy enough to, on its own, tilt your health pathologically.  Risk genes are those whose glitches can be feathery light; they by themselves do not necessarily mean you will get the disease, but if they are weighed down with other risk genes and risk factors—for example, other conditions like obesity, heart disease or diabetes– they as a group can tilt the balance.  These genetic distinctions split Alzheimer’s disease into two variants.  The first is caused by a single deterministic genetic mutation and is exceedingly rare (occurring in approximately 1% of all cases), and because the disease manifests in people in their 30’s, 40’s and 50’s is often called ‘early-onset’ Alzheimer’s disease.  ‘Late-onset’ Alzheimer’s disease is the more common variant, typically beginning in our 60’s or after.  It is sometimes still anachronistically called ‘sporadic’ because is etiology is complex and tracking down its smoking gun is harder.  For late-onset Alzheimer’s our family lineage can matter, but only with our inherited genes influencing our risk, our odds, of being inflicted.

Sincerely, Dr. Scott Small

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Corporate Partner Spotlight:

Home Health Companions

Aging Mind Foundation exists only because of the incredible people and companies that support our mission. We are thrilled to shine a light on one of our loyal and committed sponsors, Home Health Companions. Home Health Companions has supported Aging Mind Foundation from the beginning and we are incredibly grateful for their continuous support.

1. What is Home Health Companion’s mission statement and why is it important to you? 
   
   “Our mission is to ‘deliver exceptional, dignified, and quality clinical and non-clinical care.  We promise to deliver a team of unique, skilled and experienced caregivers.’ Our mission is important to us because based on nationwide surveys, we have been recognized by our employees as one of the best Homecare companies to work for and we have been recognized for going above and beyond for our clients. We are working daily to deliver our mission.”
    
   2.  Why has Home Health Companions chosen to support AMF?
   
   “Home Health Companions provides a continuum of care with not only our nursing services but the companionship and aging life care services to improve our clients’ quality of life and maintain their dignity. Alzheimer’s and other dementia‘s affects a great number of our clients, and our expertise and advocacy form a big part of how we care for them. Supporting the AMF is a natural step toward the change and development we aim to be a part of.”
    
   3.  What is one Home Health Companions achievement that you are especially proud of?
   
   “The Home Health Companions University is a self-guided online curriculum that our leadership designed in early 2020 (partly as a response to the pandemic). It’s our intention that our staff continue to shine in their exemplary care, and the new Home Health Companions University is a reflection of that which we are particularly proud of.”
    
   4.  In what ways does Home Health Companions impact the community?
   
   “The ways we directly impact the community are three. First, the services we provide fill an essential space in the lives of clients with in-home care needs wherever their home may be (not to mention their loved ones). Second, our leadership is active in the community, participating in a long list of organizations and groups as well as leading by example (as demonstrated by each leader’s multiple honors and accolades). And third, we impact the community through the support we provide vital organizations helping to shape the landscape for in-home care, such as with our support of the AMF.”
    
   5.  What are some exciting things we can be on the look-out for with Home Health Companions?
   
   “We are licensed to care for people in 13 counties across DFW and we are seeing more clients who need care all across DFW.” 
   
   6.  Can you share 3-5 tips for at-home modifications that caregivers can make to better support their loved ones living with dementia?

• Doorways: ensure all entryways and doors are free of clutter. Lighting is also essential, and you can consider sensors that turn lights on    automatically. Check that locks work well and can open easily.
• Mobility: Ensure grab-bars, ramps and hand-rails are in good condition. Consider areas like stairways, the bathtub and shower. Make it bright and inviting for shower or bath entry
• Storage: put child-proof closures on cabinets and drawers with anything breakable or dangerous. Lock up any house hold cleaning products, matches, scissors and other hazards.
• Bedroom: ensure it’s easy to get in and out of bed safely. Not only does this require good lighting and a space free of clutter, you can even consider putting a mat on the floor (as long as it is not a trip hazard). Using a monitoring system like a camera or a microphone can also be beneficial, so the caregiver can hear when something is needed.

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Board Member Spotlight: Jo Marie Lilly

Our board members are the heart of our organization. Our board is comprised of 27 hard-working, dedicated and passionate individuals. We are honored to work alongside them creating awareness and funding scientific, medical research that seeks the cause of Alzheimer’s disease and other types of dementia. Today we would like to spotlight one of those members, Jo Marie Lilly. Jo Marie is a founding board member who serves on our executive committee. She was also the 2020 Gala Co-Chair alongside Mr. John Clutts.

1.  Hometown?

Fort Worth, Texas

2.  What inspired you to work with AMF?

I became involved with AMF because my sister had severe dementia from PSP, a frontal lobe deterioration. I wanted to learn more as I was her primary care giver.

3.  Why is AMF’s work important to you?

The search for an Alzheimer’s cause. I realize this can help others with brain deterioration and dementia.

4.  Aside from AMF, what other organizations do you dedicate your time to?

I am on the Board of Dallas Contemporary.  I am a member of the Dallas Woman’s Club and Founders Garden Club where I serve on the Executive Board.  Also active with OutTeach, formerly Real School Gardens
 
5.  What would the title of your memoir be? And what is the most significant chapter?

My memoir would be titled “Always Leave Smiling”. The most significant chapter would be the difference between Dallas and Fort Worth. 

6.  If you could give a Ted Talk on anything, what would it be?

Resilience under Pressure

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CarBaret! Aging Mind Foundation is proud to partner with Reid Robinson for a socially distanced night of entertainment with a drive-in film event in Dallas! The evening will include food, drinks, film and live performances. A perfect escape from your house! SAVE THE DATE: FRIDAY, NOVEMBER 13, 2020

Just Be-CAUSE: Holiday Gifts supporting research to find the cause of Alzheimer’s disease and other types of dementia. Exciting details to make 2020 holiday-giving for friends, family and associates extra special will be sent out in early October!

Memory Wall: Losing a loved one is painful. Aging Mind Foundation offers you a space to honor your loved ones on our Memory Wall. Cherish their memory, remember the good and share their story.

Aging Mind Foundation 2021 Gala: SAVE THE DATE: FRIDAY, MARCH 5, 2021. The Joule Hotel, 6:30 pm.