PBS Documentary: You’re Looking at Me Like I Live Here and I Don’t

Many of you know the work I do with my Young Advocates group, YAAA! Young Advocates for the Alzheimer's Association.  Kathy Ritchie found me through this group last year and has had her own, massive, family struggles with dementia.  I want to help spread the word about this documentary airing THIS THURSDAY, March 29th, 2012 AT 10PM (check local listings) on PBS.  Anyone able to re-post via Facebook, Twitter, blogs, etc...  Please do so!  Kathy interviewed the filmmaker and her personal blog, www.MyDementedMom.com contains a Q&A with him.  I am sure it is a great documentary and I think and hope it will help shed some light on the disease and what it's like living with it.

Thank you for sharing Kathy!

Film Description:

You’re Looking at Me Like I Live Here and I Don’t is the first documentary filmed exclusively in an Alzheimer’s care unit, told from the perspective of someone suffering from the disease.

Lee Gorewitz's search is for more than a word, or a memory, or a familiar face. It is a quest for understanding. She wanders through her unit. She gazes through windows, examines other residents’ rooms, and strains to see outside the front entrance.

She scours family photographs in her bedroom, unable to identify herself in the pictures. Combing through the items in her closet, she mistakes an everyday outfit for her wedding dress. She finds a birthday card but cannot recognize that she is the “Mom” to whom the card is addressed. Exasperated and missing her children, Lee embraces a make-believe family of stuffed animals.

Although she lacks the ability to grasp memories, Lee’s attempts at recollection demonstrate unusual and poetic candor. Reflecting on her birthplace, she says, “Brooklyn, it’s right behind you.” Regarding her deceased husband, she professes, “How do I even say it? The air — was very good.” Considering love, she intones, “That’s a damn good thing to work with.”

The Science Behind Frontotemporal Dementia

When Times staff photographer Rob Gauthier and I first visited the Bryant family last April to begin reporting a story, (“Little-known brain disease rips apart lives of victim, loved ones,”), about a rare type of dementia, known as frontotemporal dementia, we realized that we needed to explore the science behind the malady. FTD, as the disease is known, is similar to Alzheimer's but affects the front portions of the brain and leads to behavioral problems such as the Bryants experienced with Stu.
I knew about Phineas Gage, the railroad foreman who in 1848 lost the front portion of his brain in a terrible construction accident and who survived as a radically changed man. I had read the work of Hanna and Antonio Damasio, neuroscientists who almost 20 years ago pioneered our understanding of the biology of emotions, and I was eager to see how frontotemporal dementia was being studied to further this research.
In the course of our reporting, Rob and I took a number of trips to UCLA and the West Los Angeles Veterans Affairs hospital to interview Mario Mendez, the physician and neuroscientists treating Stu. In our conversations, Mendez helped us understand what Oliver Sacks meant when he wrote, “Without the great development of the frontal lobes in the human brain, civilization could never have arisen.”
By studying the effects of frontotemporal dementia – and its slow diminishment of personality – Mendez is able to see more clearly the so-called social brain, a portion of our frontal and temporal lobes that plays a role in allowing us to successfully interact with each other and build relationships. Take away this portion of the cortex and we are no longer able to moderate our emotions.
Moderation – the inhibition of emotional impulses – can take the form of empathy and embarrassment and is critical in helping us negotiate complex social environments. Without either, as Rob and I learned during the time we spent with Stu, humans grow untethered to the world, unable to read feelings or behave in an appropriate manner.

By steering the discussion about morality, normally the providence of ethicists and philosophers, away from the symposium and putting it inside the laboratory where thoughts are considered to be not so much conscious choices, but instead reflexes based on a neurological network, Mendez and other neuroscientists are furthering the inquiry into the nature of right and wrong. In this light, religion, family, even Freud's notions of superego, ego and id matter less than biology.

Mendez argues that specific behaviors – not harming another person, respecting hierarchy and authority, accepting communal goals, recognizing equity and fairness – evolved among humans. Good manners, therefore, have as much to do with what we are born with as they do with how we were raised and what our parents taught us.
“Much of the social behavior that we take for granted and that we often consider to be learned or cultural or developmental is actually behavior that is deeply ingrained in the nervous system and in the frontal lobes,” Mendez says.
Consider that the next time you’re in a crowded restaurant and watching the kaleidoscope of interactions. Never mind the ability to speak and communicate. Never mind the opposable thumbs. The frontal lobes make humans human.
 
By Thomas Curwen
February 15, 2012

Alzheimer's and the Importance of Early Detection

Alzheimer's disease is one of the top 10 diseases Americans die from each year, but it is the only one on that list that is expanding as the other causes of death are declining. Alzheimer's disease is a degenerative brain disease and the most common form of dementia.

"Alzheimer's is becoming a more common cause of death as the populations of the United States and other countries age," notes the Alzheimer's Association. "While other major causes of death continue to experience significant declines, those from Alzheimer's continue to rise."

One reason for this difference is that the other leading fatal illnesses are preventable, such as stroke and heart disease, but Alzheimer's cannot be prevented with lifestyle changes. According to the Alzheimer's Association, preliminary data from between 2000 and 2008 showed that deaths attributed to Alzheimer's increased 66 percent, while those attributed to the No. 1 cause of death, heart disease, decreased by 13 percent.

Such statistics make the latest Alzheimer's research so vital for those who suspect they may get the disease, those already suffering from it and their friends and family, who may provide some level of in-home caregiver support during the long course of the disease.

Some of the biggest news about Alzheimer's currently is the importance of early detection.

"Biological changes associated with Alzheimer's disease are thought to begin 10 to 15 or perhaps 20 years before an individual displays symptoms," states Dr. Heather Snyder, senior associate director of medical and scientific relations at the Alzheimer's Association. "But there is no single generally accepted way to identify the disease in its earliest stages -- before symptoms are evident. At the same time, Alzheimer's therapies are in development that may be able to slow or stop the progression of the disease."

There are efforts underway to update the diagnostic criteria in a variety of ways, including biomarker measures. This spring, the National Institute on Aging (NIA) and the Alzheimer's Association published new diagnostic criteria guidelines for Alzheimer's disease in Alzheimer's and Dementia: The Journal of the Alzheimer's Association.
You might ask: If the disease cannot currently be stopped or cured, what difference does early detection make?
"The benefits of early detection are many," says Beth Kallmyer, senior director of constituent services at the Alzheimer's Association. "People who are diagnosed early can participate in the planning of their future -- they can talk to their families about advanced directives, how they want to have their finances handled, what they want to have happen when they can't drive anymore."

Not only does this allow the person with Alzheimer's disease to feel empowered, Kallmyer says, but it's a huge relief to their caregivers and loved ones who otherewise may have to make decisions under a great deal of stress later, when the disease is in its advanced stages.

We recently posted an article on Homewatch Caregivers that pulls from the Alzheimer's Association's own 10 Signs of Alzheimer's list. There is a distinct difference between the signs of normal aging and early Alzheimer's disease. For example, someone may answer the phone and simultaneously put down their keys, then not be able to find them a few minutes later. A normal aging brain will retrace their steps and remember the moment that they answered the phone, whereas an individual with Alzheimer's disease will not remember the phone call or be able to retrace their steps.

Kallmyer points out that the role of an in-home caregiver to someone with Alzheimer's is unique in the length of the disease and increased need. "It starts with helping with memory aides and then ends when the person with Alzheimer's can do nothing for themselves," she says.

Another benefit to early detection of Alzheimer's disease is that the individual can decide if they want to be part of future Alzheimer's research by signing up to participate in clinical trials. "When somebody has a fatal illness, clinical trials can be a great way for them to feel like they are making a change," Kallmyer says. "They might feel like they are making a difference for their kids and grandkids."

Ultimately, with hopes that there will be treatments for Alzheimer's disease, the time to intervene will be in the earliest stages of the brain disease. "This approach envisions what is now common practice in heart disease," says Dr. Snyder. "Where early signs of risk -- for example, in genetic markers or in blood cholesterol and/or blood pressure levels -- can be treated to reduce the chances of heart attack or stroke later on."

Dr. Snyder said there is a lot more research to be done on Alzheimer's disease. "There are many unanswered questions in Alzheimer's disease," she says. "We do not yet know the causes of the disease, we do not know risk factors associated with Alzheimer's disease."

By Leann Reynolds

YAAA! Young Advocates for the Alzheimer's Association Meeting & Social

PLEASE NOTE THE NEW LOCATION! Our next meeting is August 9th from 6-8pm in Phoenix. Please see below for more details and we will see you there! ~ Suzette

Applebees Neighborhood Grill & Bar

2547 N 44th St (just South of Thomas Rd)

Phoenix, AZ

YAAA!, Young Advocates for the Alzheimer's Association, will be having Monthly meetings every 2nd Tuesday of the month from 6:00-7:00 pm followed by a supportive social from 7:00 - 8:00 pm. Young adults 18-39 are welcome to attend! We will be reviewing current federal and state priorities of the Alzheimer's Association as well as any advocacy done by our YAAA! members for the previous month.

After the meeting we invite everyone to stay for our supportive social from 7:00 to 8:00pm to further bond with members, prospective members or just enjoy drink and food specials for happy hour! Please calendar this for future reference and let me know when you can make it. I am looking forward to seeing everyone!

YAAA! Facebook page: www.facebook.com/DSWYAAA

Live in Phoenix? Then Save the Date, May 10th & Every 2nd Tuesday Evening!

EVENT 1 (12-3 p.m.)

My friends at the Banner Alzheimer's Institute are hosting a 3 hour program for friends and family of loved ones with Frontotemporal Dementia (FTD, sometimes called Pick's disease) to help them better understand and cope with the symptoms, disease progression and the kind of care required. You'll hear from experts in the field of this dementia, get your questions answered and meet others who are in the same boat.
Remember, you may feel like you're an island unto yourself when dealing with this, but you are never alone. You just have to take that step, and this is a great first step.
Space is LIMITED, so register for this workshop STAT. Email Deidra Colvin at Deidra.Colvin@bannerhealth.com

EVENT 2 (6-8 p.m.)
YAAA!, Young Advocates for the Alzheimer's Association, will be hosting its supportive social starting at 6 p.m. at Cheuvront Restaurant & Wine Bar. YAAA! is for younger adult caregivers (18-39) and the intent is to focus on advocacy at the state and federal levels... This is your chance to make your voice heard! Our mix and mingle starts around 7 p.m... this is a great opportunity for caregivers, friends and family to connect, talk to people in the field and find a real support system here in the Valley.

2011 Alzheimer's Association Advocacy Forum

With newly elected leaders in Congress, it is more important than ever that our messages about the Alzheimer epidemic get heard. We need passionate Alzheimer advocates to come to Washington, D.C., to lend their VOICE to the cause.

Join us in our nation's capital May 15-17, 2011, for the Alzheimer's Association Advocacy Forum – become educated about the issues, learn new skills, network with fellow advocates and take our message directly to members of Congress to fight for our legislative agenda.

"I am going back this year! I met amazing, motivated people and had a life changing time. It is such an awe-inspirring time to be in an already beautiful place. To be able to make a difference, speak up... fight... I highly recommend this forum!"

—Advocate Suzette Armijo

2010 proved to be an outstanding year for Alzheimer advocacy. We saw:
•  The historic passage and signing of the National Alzheimer's Project Act (NAPA).
•  The inclusion of younger-onset Alzheimer's disease in the Social Security Administration's compassionate allowance program.

•  The first-ever inclusion of Alzheimer's disease and other dementias in the government's Healthy People 2020 report.

•  Detection of cognitive impairment included as a mandatory part of the new Medicare annual wellness visits
•  More than 112,000 petition signatures collected through the Alzheimer's Breakthrough Ride urging Congress to make Alzheimer's disease a national priority.

Each of these major victories, together with all important wins that have happened around the country on a state and local level, would not have been possible without the commitment and action of you, the Alzheimer advocate.

But even as we celebrate our successes, we still have much work ahead to ensure we build on this momentum to lead our country toward overcoming the Alzheimer crisis. The Alzheimer's Association Advocacy Forum is the premier experience to learn how we can continue to successfully advocate for these issues.

This year's Forum will be held May 15-17, 2011, in Washington, D.C. We have a program that is designed to help you hone your advocacy skills — not just for your visits on Capitol Hill, but also as you return home. You will learn about our legislative priorities, our critical messages and how to deliver these messages to key decision makers. You will learn about how to engage your local legislators and how to use a wide variety of resources in your communities to encourage more people to join with us as Alzheimer advocates.

I look forward to seeing you in May as we celebrate our recent victories and redouble our efforts to secure the Association's mission of a world without Alzheimer's.

Karen Kauffman
Advocacy Forum Chair

National Alzheimer’s Project Act (NAPA) Becomes Law

Landmark legislation passes

The National Alzheimer's Project Act (NAPA) is the largest legislative victory in many years for the Alzheimer cause. Over the last several years, the Alzheimer's Association has been the leading voice in urging Congress and the White House to pass the National Alzheimer's Project Act (NAPA). The National Alzheimer's Project Act will create a coordinated national plan to overcome the Alzheimer crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer research, clinical care, institutional, and home- and community-based programs and their outcomes. Alzheimer's advocates were instrumental in moving NAPA through Congress. More than 50,000 e-mails, nearly 10,000 phone calls and more than 1,000 meetings by the Alzheimer's Association and its advocates led us to the historic legislative victory for the Alzheimer community.

NAPA Chronology

January 4, 2011	President Obama signs NAPA into law, marking the largest legislative victory in many years for the Alzheimer cause.
Late December	Alzheimer's Association advocates have sent more than 15,000 email messages to the White House asking the President to sign the National Alzheimer's Project Act into law.
December 15, 2010	Thousands of advocates flood Capitol Hill with phone calls and e-mails urging their Representatives to vote for NAPA. NAPA is passed by the House of Representatives and moves to the White House for signature.
December 9, 2010	Alzheimer's Association President and CEO Harry Johns testified before the House Committee on Energy and Commerce, Subcommittee on Health. Harry spoke about the importance of NAPA and encouraged its immediate passage.
December 8, 2010	After Alzheimer's Association advocates blanket Senate offices with phone calls and e-mails for several days, asking the Senate to pass NAPA immediately, the National Alzheimer's Project Act (S.3036) passed the Senate unanimously and moved to the House of Representatives.
December 1, 2010	After months of behind the scenes work by the Alzheimer's Association federal affairs team with champions in Congress, the Senate Committee on Health, Education, Labor, and Pensions (HELP) approved the National Alzheimer's Project Act (S. 3036).
October 18, 2010	With the release of The Shriver Report: A Woman's Nation Takes on Alzheimer's Disease, repeated appeals are made for the passage of NAPA in Hill visits, Administration briefings, Washington policy briefings, and by Maria Shriver in interviews on This Week and other news programs.
September 21, 2010	Concluding the Alzheimer's Breakthrough Ride, on World Alzheimer's Day participants cycled to Capitol Hill and presented more than 110,000 petition signatures for delivery to Congress. The petition called for passage of the National Alzheimer's Project Act and two other Alzheimer's Association priorities. Researchers who participated in the Alzheimer's Breakthrough Ride visited Capitol Hill to meet with more than 50 Members of Congress, urging their support for NAPA. Later that day, the Alzheimer's Association delivered a message in support of NAPA at a special White House briefing on Alzheimer's disease. Harry Johns, Alzheimer's Association President and CEO, and National Board Member Stephen Hume, Psy.D., an individual living with the disease, made presentations at the meeting, focusing on the urgent need for a coordinated national Alzheimer's strategy and for its swift implementation. See the full video of the White House meeting.
July 30, 2010	The Alzheimer's Association President and CEO Harry Johns, former National Board Public Policy Chair Bettylu Saltzman, and Public Policy Vice President Robert Egge meet again with Pete Rouse, one of President Obama's top aides, to solicit the Administration's support for NAPA and for creating a national strategy to combat Alzheimer's disease.
Summer 2010	The Alzheimer's Association's President and CEO, Harry Johns, and the federal affairs team make the rounds on Capitol Hill, meeting with members of Congress and staff to drum up support for NAPA and to plan strategy on how to enact the bill by the end of the year.
March 9, 2010	Alzheimer's Association Advocacy Forum attendees march on Capitol Hill to meet with their Members of Congress, urging their support for the National Alzheimer's Project Act. David Hyde Pierce joins advocates from Iowa to meet with Sen. Chuck Grassley (R-Iowa).
February 2, 2010	With active collaboration and drafting support from the Alzheimer's Association, the National Alzheimer's Project Act is reintroduced by Senator Evan Bayh and Senator Susan Collins in the Senate (S.3036) and by Rep. Ed Markey and Rep. Chris Smith (H.R.4689) in the House. The Alzheimer's Association immediately endorses the reintroduced bill.
July 31, 2009	Based on the Alzheimer's Study Group recommendations and following consultations with the Alzheimer's Association, Sen. Mel Martinez introduces the first National Alzheimer's Project Act in Congress. The Alzheimer's Association immediately endorses the bill.
July 20, 2009	The Alzheimer's Association President and CEO Harry Johns, former National Board Public Policy Chair Bettylu Saltzman, and Public Policy Vice President Robert Egge meet with Pete Rouse, one of President Obama's top aides, to discuss the Alzheimer's crisis and introduce the need for a bold, coordinated national Alzheimer strategy to address it.
March 25, 2009	Alzheimer's Study Group releases its final report, A National Alzheimer's Strategic Plan: The Report of the Alzheimer's Study Group. The report calls for the creation of a National Alzheimer's Strategy and an Alzheimer's Project Office within the federal government. Harry Johns, President and CEO of the Alzheimer's Association, pledged, "You can be assured that the Alzheimer's Association will play a leading role in seeking the enactment of the core recommendations present in the ASG report." That same day, advocates attending the 2009 Alzheimer's Association Advocacy Forum visited their Members of Congress urging support for these key Alzheimer's Study Group recommendations, the beginning of the Association's ongoing campaign to accomplish this objective in the 111th Congress. Register now to attend the 2011 Alzheimer's Association Advocacy Forum.
July 11, 2007	With endorsement of, and financial and in-kind support from, the Alzheimer's Association, the Alzheimer's Study Group is launched at a Capitol Hill Conference. The Alzheimer's Study Group is also endorsed at the launch event by then Alzheimer's Disease Task Force co-chairs, then-Senator Hillary Clinton and Senator Susan Collins, and Rep. Ed Markey and Rep. Chris Smith, as well as by Senator Barbara Mikulski and Senator Richard Burr.
July 2007	Speaker Newt Gingrich and Robert Egge author an article in Alzheimer's and Dementia: The Journal of the Alzheimer's Association. This article, "Developing a National Alzheimer's Strategy Equal to the Epidemic," first makes the case for the creation of a federal Alzheimer strategy.