Written by J.J.

Alzheimer's disease and memory loss is invisible but, if you're over the age of 50, you certainly know it's there. You know someone who has it, care for someone who has it or know someone else who's caring for someone who has it. When you've forgotten a name or lost your keys one too many times you may worry that you have it. Recent Alzheimer's Association reports don't quell that fear. They warn that every 68 seconds Alzheimer's disease strikes a life. Is fear driving our society to keep Alzheimer's and memory loss invisible? Are we making progress bringing more education and awareness to our communities?

Dr Jytte Lokvig, author, lecturer, Alzheimer’s consultant and founder of America's first Alzheimer's Cafe says, "There's still so much fear and anxiety. People don't even want to be associated with this disease. That's why I named it the Alzheimer's Cafe." Since the creation of her 5 year old Santa Fe "cafe" the trend is now sweeping the country--- state by state. The cafe, powered by volunteers, creates a once a month social outlet for families living with Alzheimer's disease.

Lokvig's assertion that society is still fearful and anxious about Alzheimer's was confirmed in November by a recent poll showing 44% of America naming Alzheimer's as the most feared disease. That stat rises to 56% in polling of people 65+. Much of our fear is driven by an ongoing lack of preparedness in coping with the disease or supporting loved ones that live with it. Several years ago, before my mother was diagnosed with dementia, a friend gave me a copy of an article called, "Letting Go of my Father." In this elegant remembrance, a son portrays the unknowns, logistical problems and personal dilemmas that are universally encountered in family caregiving. He articulates the transient sense of isolation family members often feel, "As I walked the streets...I took to wondering which of the middle-aged people I encountered were quietly struggling to cope with their own crisis. How many of them felt utterly out of their depth? How many others, having come through an ordeal, had experience that they had no ready opportunity to share?" Those words were written in 2010. Are we any more prepared and open about dealing with Alzheimer's today?

Another driver of fear is our worry that we may someday lose the ability to care for ourselves or become a burden. The resulting denial creates a stigma that hampers our creation of services and support systems. It slows our understanding. In September, Alzheimer's Awareness Month, the Mayo Clinic addressed this issue likening the stigma of Alzheimer's to the social stigma of Cancer before society brought more of those diseases out in the light.  "Part of the problem," Lokvig states, "is that there's no cure for this disease. There are still no truly effective medical or pharmaceutical remedies for Alzheimer’s."

“When you’re caring for a person or you are someone living with Alzheimer’s or dementia, your daily life overwhelmingly revolves around the disease. Increasingly your only contact with the outside world as care partners is disease related. ” Dr. Lokvig explained, “Alzheimer’s café time gives everyone a chance to be themselves and to relax in a safe, supportive, and non-judgmental environment. The café is a respite from the disease and it allows the care-partners to share something positive and see one another in the community through a different lens.” That need and the shortage of other services for people living with Alzheimer’s and Dementia is why she's become an educator on the disease, a guide for caregivers, and an advocate for the national development of Alzheimer's Cafes. "There's absolutely no excuse for a community to not have a cafe," she said,"People find it unbelievable that you don't need a bazillion grants to start one."

"They're easy to start. It doesn't cost money," geriatric social worker Carin Mack said of her experience initiating the growth of Alzheimer's Cafe's in Seattle, Washington."One needs to find a good space in the community and work with a willing business owner to host the cafe. Each cafe is different and it is a good idea to visit one or two before you set one up," she explained. "You need someone willing to do the publicity, a person who will be there for continuity and a couple of volunteers." Mack started the first Alzheimer's Cafe in Seattle and partners with the Washington Health Foundation on a regional platform for the development of cafes.

"It’s a slow process," Dr Lukvig said referring to the work of cultivating a cafe community. The same can be said, however, for the process of educating ourselves and lifting awareness about Alzheimer's and dementias. Because there are stages to the disease there's often time for people living with Alzheimer's to take leadership helping us understand and modeling courage, acceptance, and resilience. Their caregivers often turn to the Internet for resources and blog about their challenges and rewards sharing moving stories of Alzheimers care with a wondering world. The media, for it's part in Alzheimer's education, ebbs and flows as is evident in this list of mainstream media profiling Alzheimer's 1981-2013. Focus spiked in 2009 and 2010 then quieted again last year. In 2012, for the first time, President Obama launched a National Alzheimer's Plan, with ambitious goals to prevent and treat Alzheimer's by 2025. While the nation waits for that success the plan directs much needed money toward research, caregiver support, and national education and awareness programs.

Our understanding and ability to talk about Alzheimer's still needs growth but is constantly improving. We've come a long way from the beginning of this century when Maria Shriver, whose father had dementia, confessed the hush and stigma her family faced. Alzheimer's disease, its sorrows and demands, weigh heavily on this nation and its families. Healing and visibility is coming, slowly, one story at a time, one cafe at time, and one day at a time.

Thanks to Dr Jytte Lokvig for generous time and guidance in producing this blog.

Written by J.J.

We're fully into the 21st century now and, looking back at 2013, many of the year's hot topics feel like we're in a new century: the real possibility to end aging, global development of driverless cars, cloning human embryos, discovering more water on Mars, data mining surveillance revelations, gay marriages in many states, Google Glass on our streets, printable body parts being generated, widespread deployment of drone applications, the beginnings of legalized marijuana, the first mind controlled robotics and prosthetics, and, after 36 years of traveling, finally reaching intersteller space with the Voyager 1 probe!

Reaching the edge of the Milky Way may be the most exciting 2013 development in space though some would argue that seeing more signs of water on Mars or concluding that there are billions of other earth-like planets in our galaxy's "Goldilocks zones"exceeded that thrill. Breaking the barrier of our galaxy with the Voyager probe is a "goosebump" triumph that brings to mind 1969 and Neil Armstrong's"... giant leap for mankind." Though scientists now believe the probe broke free late last year it wasn't confirmed until recently since the data it was sending back was confusing because it was the first of its kind. "Voyager has boldly gone where no probe has gone before, marking one of the most significant technological achievements in the annals of the history of science and adding," said John Grunsfeld, NASA's associate administrator for science in Washington,"a new chapter in human scientific dreams and endeavors."

If space seems a little abstract to you, down here on earth discovery was no less amazing as breakthroughs in 3D printing, biomedical engineering, and CAD software cleared the way for printed body parts. "We have a whole bank of different noses and ears now," says industrial designer Tom Fripp, of Fripp Designs.  Fripp is currently partnering with the UK's largest undergraduate University to print prosthetic eyes. That next breakthrough, nearly realizable, will use 3D printing to create organs and more advanced prosthetics at an affordable price. Great news for amputees came from the Center for Bionic Medicine who announced the first mind controlled prosthetic which acts more like a natural limb. Add to all of this 2013's sensational biomedical news in May of a successfully cloned human embryo and you may be wondering if Philip Dick's sci-fi Replicants can be far behind! The potential for misuse is always present but the goal with human cloning is to facilitate treatment for Alzheimers and a variety of illnesses with no cure today. "It's been a holy grail that we've been after for years," said Dr John Gearhart, a stem cell pioneer at the University of Pennsylvania.

Unless you follow biomed or biotech or need their innovations 2013 breakthroughs in those industries may not touch your life. However, most of us have encountered or will be encountering Google Glass and driverless cars on the streets and drones flying in the skies of our communities. The first time I saw Google Glass I thought it was an unusual eyeglass frame or head brace of some sort. I didn't realize I was facing a computer and camera and that's what's so compelling about the technology and what causes controversy. Is the Glass a friendly innovation or the dawn of a 'cyborg' class? Unlike driverless cars, which are on our streets and in development at every major automotive company now, but not available to the public yet, Google Glass is available to some now and will roll out to the market next year. Drones, on the other hand are here today. Did you think, like I did, that drones were only insidious weapons of war? Much like the Humvee, first an overseas armament then a popular stateside vehicle, the drone is now available in the public market. Amazon says they'll soon be dropping your packages on the doorstep with drones. Does anyone else think that sounds a little scary? The use of drones in war draws heated controversy worldwide and, here at home, some communities passionately debate their use in law enforcement while others seek licenses to hunt them.

Yet, as advanced as these inventions and discoveries are we still plod along down here on earth at a humble rate of civic progress. 2013 was dominated by political gridlock and extremist plays for power. Did you understand what the Fiscal Cliff, the Shutdown, and the Sequester was all about? Not many people did until they felt the impact or knew someone whose life was disrupted. Were you one of the 800,000 people furloughed when the government shut down for 16 days? Were you one of the 1.3 million that had to report to work without pay? Did you know someone that went hungry or worried that they'd lose housing because the government safety net was closed? The impacts were financially disruptive and damaging to too many of our older Americans on low incomes who absorbed the consequences of political games.  Meanwhile, the Older Americans Act of 1965 attracted bi partisan sponsorship for reauthorization this year but failed to move out of committee. The Act provides critical funding for Meals on Wheels and other essential services for our aging population.

Though America stepped away from the fiscal cliff in January 2013 the teeth of the Sequester dug in two months later threatening to bite harder every year until 2021. Throughout 2013, Sequester impacts slashed services for older Americans ending 6,000 jobs from the Senior  Community Service Employment Plan, a successful program that hires low income people who are 55+, and undercutting the services of 2/3rds of the nation's Meals on Wheels programs. Respite care, home care, transportation for frail "elderly" people was deeply cut as Area Agency on Aging services across the country lost funds impacting over a million older Americans. Lastly, as we approached the cold winter, over a quarter of a million older people could not get energy assistance because of Sequestration. There's hope that this suffering will end with the mid December passage of a two year budget that eliminated 1/2 of Sequestration's planned cuts. Which half? Unknown. But what we've seen so far from that compromise budget was an end to extended unemployment benefits that strand 2 million 55+ older Americans that were still looking for work in 2013.

In 2013 turning point moral issues occupied us in our local politics. We struggled with gay marriage and marijuana legalization. We argued fracking and Tar Sands. We debated voting rights vs. voter ID laws, privacy vs. security and safety,  gun legislation vs. the second amendment, and "right to work" vs. union benefits.  Google's announcement of Calico in September sparked questioning dinner table conversations about aging and radical life extension. In 2013, it seemed like many historical certainties met with change --- even our certainty that aging is inevitable. If you're feeling tired as you hang that new calendar it's no wonder. This was a big year!

 Update March 2014: 3D skull printed. From the short article and link to a you tube video on this: "3D printing....has great cosmetic advantages [and] patient's brain function often recovers faster then using the old method."

Also: The "Stranger Visions" project from 2013 creates faces from found DNA.  Do you know where your fallen hair or lip print on a discarded coffee cup is really going? Is someone using it now?

Update April 10--Wondering how to spend and IRS return? Google glass going on sale to the public on Tax day....but grab them fast. They sell  for one day only.