Podcast: Leaders in Elder Care – Dr. Richard Taylor on Alzheimer’s- The Farthest Thing From the Long Goodbye

UPDATE: Thank you everyone for your support for promotion of the Leaders in Elder Care Series. I had many, many requests to integrate the series into Inside Elder Care.  I’m kicking it off with on my my favorites, so enjoy!

Once in a while, you have the unique pleasure of meeting someone that just stuns you.  While it is certainly their words that enter your ears, it is their demeanor that ignites their message.  For me, Richard Taylor is one of the people.  For me, Richard Taylor is nothing short of a hero.

There are volumes written about Alzheimer’s and other forms of dementia, but I’ve yet to find one that delivers its message with the character and courage that Richard does.  In our interview, Richard conveys such courage and leadership in his battle with Alzheimer’s that it has fundamentally changed the way I think about the disease.

This interview is a bit longer than our others (45 mins), but I highly recommend it for families grappling with dementia.  I also consider it a “must list” for people who have yet to spend much time with people affected dementia.  Enjoy!

How Richard Describes Himself

Richard Taylor, a retired Psychologist, was diagnosed with Alzheimer’s-type dementia in 2001 at the age of 58. Now 65, he is a champion for individuals with early-stage and early-onset Alzheimer’s disease, and author of the book Alzheimer’s from the Inside Out (Health Professions Press, 2006). He serves on the board of the Houston and Southeast Texas chapter of the Alzheimer’s Association and has started over 50 chat rooms worldwide for people with Alzheimer’s disease and their loved ones.

Richard lives in Cypress, Texas, with his spouse Linda, and his Bouvier des Flandres (dog), Annie. His son and family live across the street from him. He now spends his days playing with his two grandchildren, gardening, and writing. Originally, he started to write to better understand for himself what was going on inside of him. When he isn’t out speaking, he writes for two or three hours every day. Even as the disease progresses, he thus far has maintained his ability to look at and attempt to understand himself.

Richard is a passionate advocate for several issues concerning the involvement of people living with a diagnosis of one of the diseases of dementia. He was a moving force in the establishment of the Dementia Advisory Committee of the U.S. Alzheimer’s Association, looking at how to better integrate individuals living with the diagnosis in the leadership, program development, and delivery functions of the Association and its local chapters. He now serves as the chair of a similar committee he helped to establish for the Alzheimer’s Foundation of America. He continues to be a sought-after speaker at various professional conferences, assisted living and memory care communities, and public programs. He is constantly looking for new audiences, especially of professionals who work in the field of dementia, to help them with getting to know the people they serve.

Richard is an articulate, thoughtful, and thought-filled speaker to caregivers. Hundreds of them have used his insights as the basis for conversations and insights into what might be going through their loved one’s minds. Many Alzheimer’s chat rooms, across the United States and worldwide, were created in large or small part with his support. He publishes his own newsletter of, by, and for people with dementia, which you can sign up to receive.

While Richard still leads a vibrant life, control of his concentration is sometimes elusive. His language facility is still mostly intact, although he increasingly searches for the right word. His granddaughter Christina is learning to read and sometimes reads to him. His garden becomes smaller and smaller each year; he plays bridge (with a cheat sheet) once a week and is halfway through editing another book of his writings.

Contact Information

Richard’s website
Richard’s book – Alzheimer’s from the Inside Out

Can Alzheimer’s Be Cured?

A fascinating interview appeared in Scientific American this morning.  Mind Matters editor Jonah Lehrer interviews P. Murali Doraiswamy, the head of biological psychiatry at Duke University and a Senior Fellow at Duke’s Center for the Study of Aging. He’s also the co-author of The Alzheimer’s Action Plan, a guide for patients and family members struggling with the disease. In this interview, Lehrer discusses with Doraiswamy some of the recent advances in Alzheimer’s research and what can be done to prevent memory loss.

Some highlights from the article:

  • The two biggest misconceptions are “It’s just aging” and “It’s untreatable, so we should just leave the person alone.”
  • There are four FDA-approved medications available for treating Alzheimer symptoms and many others in clinical trials.  Strategies to enhance general brain and mental wellbeing can also help people with Alzheimer’s.
  • A population study from Finland has developed a fascinating scale that can predict 20-year risk for dementia – sort of a brain aging speedometer.  Obesity, smoking, lack of physical activity, high blood pressure, and high cholesterol are some of the culprits this study identified.  So keeping these under control is crucial. Depression is another risk factor for memory loss, so managing stress and staying socially connected is also important.
  • By using a combination of biomarkers, genetic tests and new brain scans, we are inching very close to predicting not only who will develop Alzheimer’s but the exact age when they may start developing symptoms.  This offers huge opportunities for conducting prevention trials.
  • The interactions between vascular disease and memory loss suggest that at least some aspects of Alzheimer’s may be modifiable through diet and exercise.

Read the complete article in Scientific American.

Photo: Les Todd, Duke Photography

Live Discussion: Dementia with Lewy Bodies

A dear friend of Inside Elder Care, Kim McRae, just shared a wonderful opportunity to learn more about the second leading type of demntia after Alzheimer’s.

Betwixt and Intermixed – Dementia With Lewy Bodies

Three members of the Lewy Body Dementia Association Scientific Advisory Council (SAC) are participating in an upcoming free webinar on dementia with Lewy bodies (DLB), the quintessential overlap disease between Alzheimer (AD) and Parkinson diseases (PD).

This live discussion, hosted by the Alzheimer Research Forum, will take place on Monday, 15 June 2009, from 12 noon to 1 p.m. EST and will feature short slide presentations by Drs. Ian McKeith, Brit Mollenhauer, James Galvin, James Leverenz, and Walter Schulz-Schaeffer, with audio provided via a telephone line. (Drs. McKeith, Galvin and Leverenz are members of LBDA’s Scientific Advisory Council.)

Questions for the panel can be submitted in advance and during the live event. An interactive chat session will follow the webinar.

Click here to learn more and register for the event.

Picture: Balazs Simon

Alzheimer’s Drug Shows Promise, Begins Phase III Trials

From Indystar.com:

A third set of clinical trials to seek a drug to delay the progression of mild to moderate Alzheimer’s disease is about to get underway, drugmaker Eli Lilly and Co. said today.

The Indianapolis company will begin enrolling patients this month in two separate but identical Phase III clinical trials of Solanezumab, an antibody that may hold the key to preventing the disease that affects 5.3 million people in the United States alone.

Lilly also is in the process of testing out a different type of Alzheimer’s treatment, also geared to help those with the disease, which is known to cause dementia.

“Current therapies available to treat Alzheimer’s disease may help with symptoms, but they haven’t been proven to change the disease progression,” said Eric Siemers M.D., medical director for Lilly’s Alzheimer’s disease research, in a news release. “Biomarker results from a Phase II solanezumab trial give us hope that Lilly is on a path toward a treatment that may slow the rate of progression of Alzheimer’s disease.”

Lilly expects to enroll a total of 2,000 patients age 55 and over from 16 countries, including the U.S., in the Phase III “Expedition” trials.

Patients or caregivers interested in learning how to enroll in the Expedition trials (or a companion trial for a different treatment, known as “Identity” trials) should visit www.clinicaltrials.gov or call (877) 285-4559.

Photo credit: Sam Catchesides

Dakim Battles Dementia and Alzheimer’s

This morning I went to the gym, just like I’ve done 3-4 times a week for years.  I really try to push myself at the end of each workout.  My motivation comes from my desire to be healthy, active and have the longevity to spend many, many years with my wife and daughter.

But did you know your brain is a muscle?  What if I told you your brain could even have its own personal trainer?

It’s true, and it’s called Dakim BrainFitness.

A Brief History of Dakim

In the late 1990s, Dakim CEO and founder Dan Michel became very frustrated with the cognitive stimulation tools available to his father who suffered from Alzheimer’s Disease.  Taking matters into his own hands, he built a collection of rudimentary games to exercise his father’s brain. Over time, Dan’s creations become more complex and challenging.

When it became clear Dan’s analog tools had reached their potential, he realized it was time to go digital.  Dakim was born and Dan was driven with the thoughts of his father’s progress to create a memory training system that could be used over the long-term to create the type of improvement many scientific studies had promised.

Dakim’s Promise

A number of studies exist (read them at Dakim’s website) that correlate consistent mental stimulation with a decrease in Alzheimer’s and dementia.   One such study in the New England Journal of Medicine(1) found that seniors who consistently particpated in highly mentally stimulating leisure activities had a 63% reduced risk of dementia.

The Dakim BrainFitness system provides a mechanism through which seniors can regular exercise their brains in a way that is fun, non-repetitive and interactive such that they look forward to playing every day.

How it Works

Dakim BrainFitness is a purpose-built computer with a touch screen.  Headphones are optional depending on your location.  Dakim BrainFitness combines medically-proven brain exercises with a user interface that is so incredibly simple.  Combining audio, visual and eye-hand coordination, the games are played at a pace that is both fun and challenging.

Dakim BrainFitness trains across six cognitive domains and game takes about 20 minutes to complete.  As players improve on one domain or the other, the system increases the difficulty, enabling users to both play at their own pace yet still be challenges.  Dakim recommends the games be played 20 minutes per day, 3-5 times per week.

When you get it right, you get nothing but encouragement.  And when you get it wrong, you get nothing but encouragement.  Incorrect answers were communicated in a way that inspired me to continue, rather than frustrated me to quit.  And the content of the game was set in the era most relevant to the players – two examples of the little details that make the difference between a good idea and a effective, well-thought product.

Software updates and new game content is update via the Internet automatically — typically at night when nobody is playing.  Dakim Brain Fitness is maintenance free and require no computer skills to operate, clearing a huge usability hurdle for many seniors.

Pricing and How to Buy

Dakim BrainFitness comes in two models – a model designed for elder care communities and a home model.  Dakim shared with me only the pricing for the home model which was $2,499.  Dakim also charges a monthly $50 fee for software maintenace and the downloading of new games and lessons.   Dakim offers a 30-day moneyback guarantee – a testament to their confidence in their product.

My Throughts on Dakim BrainFitness

During Brookdale’s Brain Symposium, I spent nearly a day next to Dan Michel and his head of sales, Rick Sill.  On a perosnal and professional level, these are good guys who have the right intentions for elder care — a personal experience and the drive to help others benefit from a good idea.  From a product perspective, I was very impressed with the Dakim BrainFitness system.   It was easy to use, fun to play and based on sound science.  I thought the pricing for the device was quite reasonable – it was about the same as the cost of the Mac I am writing on now and my monthly gym membership.

Surely that is a small price to pay for a 63% reduced risk of dementia?

I recommend you take a look at Dakim BrainFitness.  Spend some time on their live product demonstration.  Their website is packed full of good materials and plenty of videos for those of you who hate reading page after page of web copy.

Sources:

  1. Verghese J, Lipton RB, Katz MJ, Hall CB, Derby CA, Kuslansky G, Ambrose A, Siliwinski M, Buschke H.  The New England Journal of Medicine, 348: 2508-2516.