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You may have read recent articles related to the long-distance caregiving of my aunt.  The uncharted waters of frustration about the care she has been receiving — and also not receiving has been very stressful, and I have not known really how to deal with it.

At a networking meeting of healthcare administrators I met Dr. Annette Ticoras, M.D., who founded Guided Patient Services – Patient Advocacy & Navigation in Columbus, Ohio. As I learned a bit about her services, I felt I had finally connected with a service that might be a resource in caring for my aunt.

Here is what GPS does:

Guided Patient Services provides patient advocacy and navigation to clients of all ages who are facing new or challenging healthcare issues.

 

We are your “Doctor in the Family”

GPS-Compass

Guided Patient Services supports you through your healthcare crisis at whatever level you need us. Whether you’re looking for full support, a one-time consult or anything in between, Guided Patient Services provides direction and understanding to confusing, time-sensitive healthcare decisions.
It’s our honor and privilege to be entrusted with the care of our patients and families. When you choose us, you can depend on us to be:

​• Your translator. We understand medical language, and we have experience with complicated diagnoses, procedures, and treatment plans. As your patient advocate, our job is to explain these concepts to you using layman’s terms, as many times as you need us to, so you can make informed decisions.

• Your coordinator. We know that arranging healthcare appointments, surgery, or hospitalizations is time consuming and overwhelming. We will help get your appointments scheduled and make sure you are prepared when the day arrives. If you are unfamiliar with where to go or where to park, we can accompany you there, making sure you are at the right place at the right time, and that all your questions are answered. We’ll stay by your side as long as you need us.​

• Your liaison. We provide coordination of care with multiple health care providers, which is especially common if you require surgery or a hospitalization. We ensure your whole health care team is on the same page and working together for your best possible outcome.

• Your representative. We attend inpatient and outpatient medical team conferences on your behalf. We listen, ask questions and relay your input to everyone involved with your care. Then we’ll explain to you what was discussed during the conference, and answer any questions you have. If you desire, we can serve as the communications contact for other family members, so everyone is up to date on your healthcare journey.

Service Disclaimer

The services provided by Guided Patient Services, Inc are currently not covered by Medicare, Medicaid or any other insurance plans. Payment for agreed upon services will be billed and provided as detailed in the Client Services Contract.

Services provided by Guided Patient Services do not include medical, financial, legal advice or recommendations. Guided Patient Services does not provide medical diagnosis or any form of medical treatment. All clients must continue under the care and supervision of their licensed healthcare providers.

 

The directory of advocates nationwide is:  http://www.advoconnection.com.

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You may feel as I used to feel after each visit with my mom.   I always wanted more for her – that she be able to continue enjoying her life and that she have refreshing new experiences.  My way of achieving that was taking her out for walks in her wheelchair and excursions in the car.

But ten years ago in that day and time, few elders were comfortable using computer technology.  Thankfully times have changed!!

I am pleased to introduce the Birdsong Tablet, pre-loaded with hundreds of hours of music, videos, games, travel and even therapeutic content – all easily accessible by your loved one with one push of a button.   And here’s the source:

Built on an award-winning research study about the impact of personalized computers upon the daily life of seniors and adults with dementia, Westminster Canterbury on Chesapeake Bay in Virginia Beach, Virginia is teaming with the French-based company TMM Groupe in the launch of the Birdsong Tablet.

The Birdsong research study conducted in 2015 at Westminster-Canterbury showed that simplified in-room digital technology and curated content can improve life and brain health for older adults.  The study was conducted among residents of Westminster-Canterbury’s Hoy Nursing Care Center with Eastern Virginia Medical School and Virginia Wesleyan University.  The project received the 2016 Excellence in Research and Education Award from LeadingAge, a Washington, D.C.-based association representing 6,000 non-profit aging services organizations.

I had a question about the learning curve for seniors, especially seniors with dementia.  I was told that the Birdsong Tablet is so designed to serve all cognitive levels.  Icons in the first row on the screen are appropriate for everyone, while icons in the bottom row are more appropriate for residents with higher cognitive functioning.

BirdsongTabletphoto2

The photo attached is of Westminster-Canterbury on Chesapeake Bay in Virginia Beach, Virginia resident Ken Scott using his tablet.  This photo is courtesy of Westminster-Canterbury on Chesapeake Bay.

Along with the pre-loaded content, the device also provides a user-friendly family app that makes it easy for residents and their loved ones to connect with video chat and messaging. The tablets are available through senior living communities.  A cloud-based home version will be available in coming months. Please see below for complete details.

Contact Scott McCaskey, 757-625-2518, ext. 3 or scott@goldmanandassociates.com  for more information or to set up interviews with all parties.

 

Back when my brother and I were sharing the caregiving of our mom during years 2007 – 2011, I did not own a SmartPhone and had never texted.  Most of our communication was via live chats by cellphone.  Fast forward to 2018 and care has intensified for aunt Eunice, who is almost 91, a resident at a nursing facility in Southwest Virginia, a five-hour commute from Columbus, Ohio.

As I told you in an earlier post, our aunt had to leave the facility where she had been a resident for almost 28 years when it closed its doors.  As her guardian and POA, I made the decision to move our aunt to the town near where she grew up and where she has some family.

The move proved to be very difficult, partly because she had trouble understanding why the move was necessary and also because her vision is severely compromised due to macular degeneration.  And my assumption that she might connect with family and friends has been slow to materialize.

Her seemingly only choice for pushing back was to be combative and argumentative with her new caregivers.  That behavior caused her to become medicated to the point where she became relatively helpless, unable to lift a cup to her lips for water or feed herself.

Regrettably, I was recovering from emergency surgery when the move took place and it was weeks before I was able to go and check on her.  By that time she was sleeping much more than she was awake.  In fact the first time I visited her after her move, I had trouble waking her.

When our aunt left the original nursing facility she was feeding herself, getting dressed every day (with some assistance), and able to maneuver her wheelchair throughout the facility and communicate easily with her roommate and with other residents.

Since her arrival at the new facility in late October she has now lost approximately 50 pounds and developed a bedsore on her heel.   Our efforts at bringing attention to her needs through the nursing manager have gone unheeded.  With perseverance I found the doctor’s location and phone number, but requests for a call back went unheeded.

With the support of my daughter-in-law, who has been a nursing home administrator, the director of nurses was apprised of our aunt’s condition, and she pulled the medications that had been sapping our aunt’s energy.

Thankfully, she is now more awake and aware of her surroundings; and the best part is she is gradually getting back to enjoying the taste of a few foods she liked in the past.

And another change has been instituted:

The family has hired a sitter to come and be with our aunt for a couple of hours each day, Monday through Friday.  This sitter has proved to be an angel in some ways.  Yesterday the sitter brought her two chicken drumsticks from KFC – a favorite food from the past.  And the sitter is engaging our aunt in conversation, offering her the comfort and pleasure of personal attention.  The sitter calls each day from our aunt’s room, updating us as to our aunt’s progress.  I cannot say enough good about this lovely lady who has come into our lives.

Two other basic needs, we are continuing to wrestle with:  keeping our aunt hydrated and keeping her turned regularly.  As they say, “The squeaky wheel gets the oil!”  Every loved one in a facility needs an advocate!

 

 

A Piece of the Action

           After years of communication with my readers, there is one thing I know we have in common:   more of us fear the specter of Alzheimer’s than cancer, stroke, or any other debilitating condition combined.  And we have become frustrated, wondering if the hard shell of Alzheimer’s prevention and a cure will ever be cracked.

I would like you to know about a most amazing idea that came across my desk recently, which I am excited to share with you.  The idea happens to be a bold initiative to ensure a cure for Alzheimer’s in time and for each of us to have the opportunity to claim a small piece of its ownership.

To view a brief description of the initiative, click here.

The article, “Alzheimer’s:  The Shocking Truth About the Search for a Cure,” was authored by Max Tokarsky, Founder and CEO of InvestAcure, a Fin Tech Public Benefit Corporation startup based in Brooklyn, New York.

The entire article follows with my interest in receiving your feedback.

Alzheimer’s: The Shocking Truth About The Search for A Cure

Wall Street Math Behind Pfizer’s Decision and A Bold Initiative To Ensure A Cure In Time

by Max Tokarsky

Today at the office, we were calculating the Alzheimer’s death toll worldwide and figured out that every 38 seconds another life is claimed. With Pfizer following other Big Pharma in downsizing or closing their Alzheimer’s research divisions, it is clear that due to the high cost and unpredictable nature of clinical stage research, the investment business model for Alzheimer’s drug discovery is simply broken.

Many drugs have shown potential in restoring brain connections and memory, and leading scientists believe that Alzheimer’s can be cured. Yet, with scarce investment in clinical trials, progress has stalled and countless millions may perish as a result.

In laboratory experiments Alzheimer’s can be prevented and even reversed

In their thought-provoking article in the prominent blog, The Hill, founding members of the Global CEO Initiative on Alzheimer’s Disease; Andy Sieg and George Vradenburg write that according to a September 2014 study from Merrill Lynch and Age Wave, more Americans fear the specter of Alzheimer’s than cancer, stroke or any other debilitating condition combined. They go on to raise the alarm, that before Baby Boomers reach their 70s, generating a massive wave of new Alzheimer’s patients, we need a dramatically new approach to the way we fund research and development of new medicines and therapies for the disease. Within ten years, the government estimates that more than $2 trillion will be spent on care for those with Alzheimer’s, having a massive impact on the economy.

Dr. Hugo Geerts, who formerly headed Alzheimer’s drug discovery at Johnson & Johnson Belgium and who has now joined our Scientific Board at InvestAcure, described the situation best. ‘We can cure Alzheimer’s in our mice every week, but when it comes to clinical research where real progress needs to be made to cure people, there is simply no funding available.’

A single early-stage clinical trial can cost $10 — $30 million or more. Each trial just tests one potential component of a cure. With each trial, we learn vital lessons and come a step closer, but hundreds of trials are needed to test countless combinations and compounds. High-risk Venture Capital investment models need some degree of predictability. If you know that 9 of 10 startup companies fail, you can still make money as long as you make 20X profit on the 1 successful outcome. With the high cost and unpredictable nature of clinical stage drug discovery for a complex disease like Alzheimer’s, there is no way to create a sound mathematical model to forecast when a cure will be found or the amount of investment needed. This makes consistent Venture Capital investment impossible to sustain and has culminated in the current investment scarcity.

A comprehensive study of financial models for Alzheimer’s drug discovery, conducted by Andrew Lo, Director of the Laboratory for Financial Engineering at MIT, puts this in stark terms ‘our portfolio simulations show that the risk-adjusted return on investment of (Alzheimer’s) parallel discovery is insufficient to attract private-sector funding.’

What about charitable organizations and government funding?

The largest Alzheimer’s charity, the Alzheimer’s Association, raised about $300 million in 2016 and gave $29 million to support 159 research projects, almost all of which were pre-clinical. It goes without saying, that donors received zero equity in the research. It’s important to note that the Alzheimer’s Association does extensively benefit the public good by providing support to caregivers and advocacy, but their impact on advancing clinical stage research is rather small.

This is an inherent problem with a non-profit solution for this kind of social impact. Donors can be attracted to give with ads promising a particular impact which may legitimately be one of the missions of the non-profit. Once their donation is given, however, the non-profit can legally use those funds to support other related missions included in its charter. Donors do not own stock equity with their donation; they can’t sell their equity and get their money back. If the intended impact involves the development of a product which is eventually sold, the donors have no share in the revenue from that product, which seems both inherently unfair and builds in a lack of transparency leading to an inefficient impact model.

What about taxpayer-funded research?

In 2016, the U.S. National Institutes of Health (NIH) allocated $929 million for Alzheimer’s research. These funds were distributed in 1768 grantsaveraging a few hundred thousand dollars each and given mostly for pre-clinical research conducted by university labs. With the cost of clinical stage research in the tens of millions for a single study, this wide and shallow distribution of funds has little impact on clinical stage drug discovery and hence the process seems highly unproductive.

It is also hard to imagine that there were 1768 great ideas funded and much more probable, that as with much else in government, political motivations were involved. It goes without saying, that taxpayers had no direct say in how their money was spent, they also receive no stock equity when the government invests in private sector research.

A bold solution to end Alzheimer’s

We believe that InvestAcure’s Public Benefit Corporation model can solve this investment bottleneck by enabling the millions impacted by Alzheimer’s to power clinical stage research with affordable, automated, spare change investment.

Science relies on trial & error to make progress — with each clinical trial funded, we come one step closer to a cure!

The mechanics of the model are similar to other online investment platforms such as Stash and Acorns. InvestAcure is set up as an SEC-approved Registered Investment Advisor (RIA). Users download an app, set up an online investment account and give InvestAcure permission to purchase stock on their behalf. They then connect the credit cards they use for day-to-day transactions. Now, every time they spend money, the system automatically rounds out their transaction to the nearest dollar and deposits the spare change in their investment account. Guided by a panel of leading scientists, InvestAcure then invests those funds in companies spearheading research.

The motivation for this investment is not profit, but rather a feeling of doing one’s best to address a legitimate fear, investing a reasonable amount in a way that makes sense. Much like the motivation for buying term life insurance, you do not expect to die in the next 10 years, however, it makes sense to spend $50 a month to feel secure in the knowledge that you have done your best to protect your family in case you do. Similarly, if you know that you have a 30% chance of getting Alzheimer’s, it makes sense to spend $50 per month to have a reasonable chance for a cure.

Public Benefit Corporation model vs nonprofit

A Public Benefit Corporation is responsible to its shareholders in prioritizing a mission of a specific social good over profit. In the case of InvestAcure, our mission is finding a cure for Alzheimer’s and eventually, other deadly diseases. Unlike a charity or government taxes, the Public Benefit Corporation model is inherently fair and accountable, with each investor receiving fair equity in the outcome and putting investment to work directly in funding companies with specific trials, vetted by a world-class scientific board.

Why spare change investment?

The idea of spare change roundup investment is not new. A company called Acorns, has in a short time attracted two million users to an investment platform offering spare change investment as a way for Millennials to save a bit for retirement in a psychologically painless way.

While spare change doesn’t seem like a lot, automatically rounding up one’s transaction adds up to about $50 per month on average. 26% or 70 million Americans have a relative with Alzheimer’s. If just 1.5% become spare change investors, that’s $600 million annually, $3 billion over 5 years. That would have 30X the impact of Bill Gates’ recently publicized $100 million commitment to Alzheimer’s research. At a 15% participation rate, the number jumps to $6 billion annually or a staggering $30 billion over 5 years! That’s enough for countless clinical trials and a reasonable chance for a cure.

Just think about it, does it really make sense for millions of people to wait around to die from a horrible disease, simply because one can’t make a profit developing a cure?

Doesn’t it make more sense to invest our spare changeregardless if we make money or lose it, but so that we have a pretty decent chance for a cure in 5, 10 or 15 years?

In the words of Dr. George Perry, a world renowned Alzheimer’s scientist and editor of the Journal of Alzheimer’s Disease, who has recently joined the InvestAcure board, ‘InvestAcure has developed a formidable financial plan to end the roadblock imposed by insufficient capital to fund clinical trials necessary to discover effective cures for Alzheimer Disease. With so many major pharmaceutical companies leaving the space, it is even more imperative that we activate this approach immediately if we are to bring cures to families.’

Such encouragement is gratifying and gives us the confidence to believe that the InvestAcure solution can work. It also means that the sooner we launch and scale, the sooner new studies can get funded. The sooner a cure is found and people stop dying!

This realization is probably both the most awesome feeling of purpose any human being can hope to experience and the heaviest possible responsibility. To think that every day, every hour, every minute, if we could just work a bit harder, a bit faster, a bit smarter, another life could be saved.

It reminded us of that scene at the end of Schindler’s list, when Oskar Schindler, surrounded by the 1100 people he saved from the Nazi death camps, is given a parting gift of a ring. It’s inscribed with the words from the Talmud ‘Whoever saves a single life, saved the whole world.’ He takes a gold pen from his jacket pocket and breaks down crying realizing that with just that pen, he could have saved another life.

So, to keep ourselves accountable we decided to put up an office clock, which counts down every 38 seconds and reminds of another life lost. If our idea makes sense to you, join us and together we can stop that clock 38 seconds sooner!

Over the past six months since we quit our day jobs and began working on building InvestAcure full time; a lot has been accomplished:

  • We have built a demo of our investment platform and are about six months away from official launching of a full working model.
  • Received approval from the SEC for our plan, with InvestAcure now an official Registered Investment Adviser (RIA)!
  • Most importantly, we assembled an incredible team, which includes some of the world’s leading Alzheimer’s scientists, who believe that this solution offers the best chance for a future when Alzheimer’s will be cured.

Right now, we are working to raise our Seed round, so that we can finish building the investment platform and launch in the next six months. If you feel, like we do, that working on an idea which could save countless lives is just about the most meaningful thing one can do in life, the good news is that there is plenty of room to get involved:

  • We need as many people as possible to sign-up to download the app when it is launched, this saves precious time once the app becomes available and let’s our investors, who are helping us develop the platform, know that there is strong base of people who care! Go to http://www.investacure.com to sign up today!
  • We need volunteers to spread the word to their local community, answer questions nd galvanize support. We simply can’t do this alone. If you are a natural leader and want to help build the InvestAcure community, email us at info@investacure.com Please put the word Volunteer in the subject of your email.
  • Finally, if you have the financial means to become a Seed investor and partner in building the InvestAcure platform faster, so that more lives can be saved, please email me at mtokarasky@investacure.com and we can schedule a time to speak.

Max Tokarsky is the Founder & CEO of InvestAcure, a FinTech Public Benefit Corporation startup based in Brooklyn, New York. He can be reached at mtokarsky@investacure.

 

 

 

 

 

 

Safe travel starts with planning before you leave.  Here are some suggestions for traveling with an elder dealing with dementia challenges.

Be sure to do some advanced planning.

  • Call the airline to explain your needs. Ask what they provide.  Ask about rules for carry-on medicines.
  • If you are traveling to a resort, call and ask what help they can provide.
  • Pick out snacks or book activities to help your elder enjoy the trip.
  • Put together a packet that has phone numbers for your loved one’s primary care provider, neurologist, and pharmacist, an emergency family contact who knows your elder’s medical history, and the nearest pharmacy and hospital in the place your are visiting.
  • If an airport or tourist attraction requires security screening, ask to have your elder manually searched. This will avoid setting off the security screening device.

Prepare your elder’s medicines.

  • Be sure to have prescriptions filled and picked up before you leave home.
  • Pick up the medications 2-3 weeks before the start of the vacation, so you have enough to take with you.
  • If needed, call your insurance company to see if they will give you advance doses so you will not run out.
  • For air travel, carry two supplies of medicines with you. Put one in your carry-on and the other in your checked baggage.
  • Carry a written list of medicines and doses. This is called a Home Medication List.
  • Bring your pharmacy phone number from home. They can help you with insurance issues at a new pharmacy.

Prepare for the event of an emergency.

  • Ask for and carry a current emergency care plan signed by your care provider.
  • Your elder should wear a medical bracelet or necklace, including any allergies on it.
  • Everyone traveling with your elder should know first aid.

Take precautions if your elder is on a special diet.

  • Ask to have a refrigerator put in your hotel room to store special diet foods.
  • Make enough meals to have on hand during traveling. Plan extra meals in case you are delayed by weather.  Be sure to take an insulated carrier and enough cooling packs to keep food that you are carrying safe.
  • For travel out of the country, you may need a doctor’s letter to take foods/liquids in and out of the country.

Take additional precautions once you arrive at your destination.

  • Check for the location and phone number of a pharmacy and hospital near you.
  • Call ahead for advance seating at restaurants and local attractions.
  • Have a hospital bag put together so that you will have everything you need if an emergency happens. Include a change of clothes, money, the emergency care plan, and your care notebook or notes about your elder’s care.
  • If you need to visit the emergency room while on vacation, the following tips may help make it a smooth visit:
  • Carry an emergency care plan from your care provider. This should include the doses of emergency medicines already calculated for your elder’s weight.  This plan should be signed by your care provider.
  • Bring your provider’s contact information and your elder’s medication list with dosage and formulation.
  • Speak up for your elder. You know your elder’s care best.

Content in this article was adapted from information sent to us by CHOC Children’s Neuroscience Institute.

You Never Know!

Though I am dog tired from a day trip to Virginia to check on my 90-year-old Aunt Eunice, I want to share with you an amazing instance of synchronicity (if such be a word).

I made the trip from Ohio for the nursing home’s Christmas Party today.  Here is what happened —

Though physically challenged, Aunt Eunice has always loved to sing – her alto voice is usually spot on with the harmony of the music, if the song is one she knows.  She was excited to be called to the front to sing with the guitar player during the party.  One tune she was really comfortable with was, “I’ll Fly Away”.

Immediately, after the party broke up, a nicely dressed elderly lady and her daughter appeared before us, introducing themselves to my aunt, who actually remembered the older lady.   I was then asked by them, “Who are you?”   In that place of families knowing families, I answered, “I’m Dupey’s daughter.”

This lady broke into a huge smile, telling me that my mother was her fifth grade teacher. (Before marriage my mom had taught in the community.)

This lady further said, my mother was the best teacher she ever had; and she had named her daughter Christine after my mom!

The mom and daughter were willing to have me snap their photo together.  As I did so, the daughter confided to me that she had always wanted to be called by her middle name Christine rather than Wanda.

Had my aunt not been called to the front, this meeting might never have occurred.

The mother, I was told, has a school days photo in her room.  When I return to the nursing facility for a visit with my aunt, I will hope to talk further with this mom who brought tears of appreciation to a 75-year-old daughter on a gray day in December!

 

12 picture poster

Forget the candy, shirts, sweaters, smell-um-goods this year, as those well-intended gifts may wind up in your loved one’s closet and be soon forgotten.

Instead consider making a Memories from My Life photo poster filed with enlarged pictures and captions, giving your loved one a constant source of pleasure and pride, with the wall poster visible at all times, reminding your loved one of the special people, places, and events that shaped his or her life.

To get started simply visit http://www.MemoriesfromMyLife.com or click here, then follow the prompts.  (If you use older photos, they will need to be uploaded into your computer or iPhone.)  This year as our gift to you, please use PROMO CODEmfmlnh10 for 10 percent off your order!!

Here are a few ideas for deciding what photos to use:    1) A place (childhood home, favorite vacation spot, or special event;  2) Special people (parents, siblings and friends); 3) Hobby/interests (travel, sports activities, crafts, gardening, art interests); and/or  4) Pets (a collage of family dogs, cats, birds, favorite animals).

The posters come in four sizes, beginning with the smaller four photos plus cameo picture of your loved one.  (Shown at the top of this page is the 12-photos plus cameo size 24″ X 36″.)  Alzheimer’s caregivers recommend two or three smaller size posters, such as the 4-photos plus cameo size 16″ X 20″ for loved ones dealing with memory challenges.

Reminiscing with the photo posters can facilitate conversation with visitors.  And your loved one will enjoy seeing herself or himself as they used to be!

Remember to use the PROMO CODE:  mfmlnh10 for 10 percent off your order!!