July – Alzheimer’s Association International Conference

https://www.alz.org/aaic/

From July 13-18 in Boston, MA, the Alzheimer’s Association International Conference© 2013 will bring the world’s leading dementia researchers together to reveal and discuss the latest news in the field. As AEDA participants, we will send you a special communication during the conference to keep you up-to-date on the latest and most exciting developments in Alzheimer’s research. We hope you will share this with your employees.

We are also hosting our inaugural Corporate Roundtable featuring experts from Fortune 500 companies, academia, media and the Alzheimer’s Association discussing best practices for supporting employees who are helping family members navigate this challenging disease. This event is open to all AEDA members, click here for more details.

Surveillance is an essential function of public health. It involves collecting data to better understand the extent of a problem and its impact, and to motivate policy makers to address the problem. Each year, every state conducts a public health survey through the Behavioral Risk Factor Surveillance System(BRFSS).

Recent work by the Centers for Disease Control and Prevention (CDC) now enables states to collect data through the BRFSS on the impact of Alzheimer’s disease using:

• The Cognitive Impairment Module
• The Caregiver Module

The Cognitive Impairment Module

The BRFSS Cognitive Impairment Module provides demographic, geographic and socioeconomic data regarding cognitive impairment. The module asks about memory and cognitive abilities as well as the impact of any memory loss on daily living. Five states served as pilots for the module in 2009, and 22 states asked the questions in 2011. Another 23 states and the District of Columbia asked the questions in 2012, and 19 states and Puerto Rico are asking the questions in 2013. Over the three-year period, 45 states and two territories will have used the module.

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New film project shows how caregivers adapt to Alzheimer’s disease

http://www.aarp.org/health/brain-health/info-06-2013/living-with-alzheimers.html

David Shenk, author of The Forgetting — Alzheimer’s: Portrait of an Epidemic, has produced a new film project titled Living With Alzheimer’s. Shenk asked four directors to each make a short film to demonstrate how families adapt to caring for a person with Alzheimer’s disease.
Read the article >>

David Shenk, the author of The Genius in All of Us and The Forgetting — Alzheimer’s: Portrait of an Epidemic, recently talked with Mike Cuthbert about his Living With Alzheimer’s film project. In his role as producer, Shenk tasked four different filmmakers to each make a short film to show how families adapt to having a loved one who has Alzheimer’s disease.

See also: Caregiving Resource Center

Veteran caregivers can be the best resource for new family caregivers “living with Alzheimer’s.” — Peter Zander/Getty Images

In this Prime Time Radio interview, Shenk points out that every year about 450,000 Americans arediagnosed with Alzheimer’s. Every diagnosis creates a ripple effect, as millions of family members are thrown into a terribly sad, confusing and time-consuming new world.

Shenk believes the best resource, by far, is experienced Alzheimer’s families — caregivers who have already spent years learning to navigate this harrowing terrain.
“That’s where our new film series comes in,” said Shenk. “It will introduce shell-shocked, brand-new caregivers to veteran caregivers, and powerfully demonstrate precisely how they cope.”
Shenk emphasizes that while no one is glossing over the difficulty of the disease, he did ask the filmmakers to focus on solutions — the tools and strategies families employ to carve out a comfortable and meaningful life.
“The overarching message of each film will be: We’re making it through this, and you can, too,” he said. “The agenda: to show newly diagnosed families that life does go on, that in the face of all the extraordinary challenges presented by Alzheimer’s, families do learn to cope. The goal is to show how people adapt.”

Also of Interest

• Memory: Is mine normal?
• Amy Goyer on Alzheimer’s and her dad
  
• Join AARP today and receive access to exclusive information, benefits and discounts
  
• More health information you can use

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One day can make a difference in the fight against Alzheimer’s

As the sun rises on June 21, The Longest Day®, teams across the northern hemisphere will begin a full day of activities to honor those living with Alzheimer’s disease and their caregivers, and to raise awareness and funds for the Alzheimer’s Association. You can participate by following their progress, sending encouragement and donating to the cause.
Participate in The Longest Day >>

Join us on June 21, 2013 for The Longest Day^® , as together we honor those living with Alzheimer’s disease and their caregivers. Organize a team for this sunrise-to-sunset event and raise funds and awareness for Alzheimer’s care, support and research.

This event is about patience, strength and endurance – but it’s also about a challenge. On The Longest Day, do something you love – or try something new – to advance the cause! For people facing Alzheimer’s disease, this challenge is every day. For you, it’s just one.

On The Longest Day, it’s time to make a difference.

REGISTER NOW »

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HHS releases 2013 update to the National Alzheimer’s Plan

http://www.alz.org/news_and_events_hhs_releases_2013_update.asp?WT.mc_id=enews2013_06_19

The Department of Health and Human Services (HHS) has released theNational Plan to Address Alzheimer’s Disease: 2013 Update, which updates the first-ever National Alzheimer’s Plan issued in May 2012. The update includes a new timeline for achieving the plan’s first goal — to prevent and effectively treat Alzheimer’s disease by 2025 — and a review of progress over the past year. The Alzheimer’s Association commends HHS Secretary Kathleen Sebelius for her ongoing work to ensure a strong implementation of the National Alzheimer’s Plan and the inclusion of a timeline to reach the plan’s first goal.
Read the Association’s statement >>

HHS releases 2013 update to the National Alzheimer’s Plan

Washington, D.C., June 14, 2013 – Today, the Department of Health and Human Services (HHS) released the National Plan to Address Alzheimer’s Disease: 2013 Update. The first-ever National Alzheimer’s Plan, initially released in May 2012, was mandated by the bipartisan National Alzheimer’s Project Act (P.L. 111-375), which Congress passed unanimously in 2010. The 2013 Update includes a new timeline for achieving its first goal – prevent and effectively treat Alzheimer’s disease by 2025 – and a review of progress over the past year.

“The Alzheimer’s Association commends HHS Secretary Kathleen Sebelius for her ongoing work to ensure a strong implementation of the National Alzheimer’s Plan and the inclusion of a timeline to reach the Plan’s goal of preventing and effectively treating Alzheimer’s disease by 2025,” said Harry Johns, President and CEO of the Alzheimer’s Association and member of the Advisory Council to the Plan. “So that this plan called for by Congress can be translated into results, Congress now must continue its leadership by supporting the additional $100 million included in the President’s fiscal year 2014 budget for the fight against Alzheimer’s.”

In addition to the creation of a timeline, the 2013 Update includes new provisions such as:

• Creation of important milestones to facilitate achieving the goal of preventing and effectively treating Alzheimer’s by 2025;
• Development of a curriculum on Alzheimer’s disease for primary care practitioners so that providers have the necessary skills to provide high-quality dementia care;
• Convening an expert panel on advanced dementia to examine the unique and often unaddressed needs of those in the late stages of the disease; and
• Expanding public outreach efforts to increase awareness of the disease and connect those with Alzheimer’s and their caregivers to available resources.

A review of accomplishments over the past year as outlined in the 2013 Update includes work by the Alzheimer’s Association to launch the International Alzheimer’s Disease Research Portfolio (IADRP) database in partnership with the National Institute on Aging (NIA). Consistent with the National Alzheimer’s Plan objective of fostering international collaboration, the Alzheimer’s Association and the NIA also co-hosted a funders meeting in July 2012 at the Alzheimer’s Association International Conference (AAIC) and have convened representatives of several funding organizations around the world for regular teleconferences. This group, which will convene again in Boston next month at AAIC 2013, will continue efforts to better understand the global Alzheimer’s research effort and enable research funders to coordinate planning, leverage resources, avoid duplication and identify new opportunities for collaboration.

In addition, also at AAIC 2013 in Boston and highlighted in the 2013 Update, the Alzheimer’s Association and the Centers for Disease Control and Prevention (CDC) will release the second in a series of “Road Maps” to advance cognitive health as a vital, integral component of public health.

Today there are more than 5 million Americans living with Alzheimer’s disease and 15.4 million friends and family members providing care, often at the expense of their own health. While the human toll is alarming, the economic costs pose a significant threat to the nation as well. According to the Alzheimer’s Association2013 Alzheimer’s Disease Facts & Figures report, caring for people with Alzheimer’s, the country’s most expensive condition, currently costs the nation $203 billion annually with projections to reach $1.2 trillion by 2050. However, even with this information, for every $27,000 Medicare and Medicaid spend on caring for individuals with Alzheimer’s, the National Institutes of Health (NIH) spends only $100 on Alzheimer’s research. The President’s budget takes the next step in recognizing the correlation – investments in Alzheimer’s research today will result not just in better lives for millions, but a much sounder financial future for our nation as well.

“Congress must see to it that the necessary resources are committed to accelerate and prioritize the government’s efforts on Alzheimer’s,” said Johns. “Without these new resources, efforts in Alzheimer’s research, care and support will continue to be hampered to the determent of millions of families and the economic well-being of the nation.”

For the full 2013 Update, visit http://aspe.hhs.gov/daltcp/napa/#Plan. For more information on Alzheimer’s disease and available resources, visit the Alzheimer’s Association at alz.org.

Alzheimer’s Association
The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.

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A special gift to keep or give – Alzheimer’s Association

http://act.alz.org/site/PageNavigator/FY13_Fathers_Day_recipe_premium.html

Today I want to share an incredible story about Christina, who has devoted her life to helping others. Her beloved father suffered from Alzheimer’s for six years before passing away, and he inspired her commitment to easing the burden for families who face this dreadful disease.

As Father’s Day nears, I hope Christina will inspire you to honor a special dad in your life by making a gift in his honor.

Your gift demonstrates your commitment to the fight against Alzheimer’s whether the dad you celebrate has Alzheimer’s or cares for someone living with the disease. This kind of story is too common and your donation shows that you want to help advance research and provide education, support and guidance to families caring for an individual with Alzheimer’s.

Christina’s father, Giovanni, was an accomplished Italian chef. In appreciation for your support, you can download the recipe to his signature pasta dish – one of her favorites.

Like Christina, one of the greatest gifts you can give this Father’s Day is one that helps others. Please make a donation in honor of a dad today. Thank you.

Honoring a father’s battle with Alzheimer’s Disease

Christina’s life changed forever during a visit home from college, when she discovered that her father, an Italian chef, could no longer remember how to make his signature pasta dish. A short time later, he was diagnosed with Alzheimer’s disease.

Over time, Giovanni forgot every recipe he’d ever made. “Eventually, the disease robbed my father of even knowing that I was his daughter,” she says sadly.

Throughout his illness, her father was always painfully aware of the changes that were happening to him. “He knew something wasn’t right, and that he would never get better. I always tried to be strong for him, and support him in any way I could. But it was devastating to watch.”

A daughter’s favorite memory of her dad

Christina reflects on the changes Alzheimer’s wrought on her father, and on their relationship. “It’s so easy to see the disease first, and then the person,” she says. “As Alzheimer’s progresses, more and more of the person seems to slip away. But there are so many ways to share meaningful moments together and to remember that there is still a person inside.”

As an example, Christina recalls her wedding, one of her favorite memories of their years together. “It was toward the end of his illness and he was having more bad days than good,” she explains. “I was concerned that he wouldn’t be able to attend, but one of his close friends brought him.

“He was having trouble walking at that point, but not only did he walk around – he lit up. It was like he was back to being an entertainer and a host, and he loved every minute of it. We danced to Frank Sinatra’s “The Way You Look Tonight,” and he looked so happy as he sang along.”

Committed to helping others facing Alzheimer’s

Christina’s journey through her father’s illness affected her profoundly, including her career decisions. She now works for the Alzheimer’s Association, providing education, guidance and support to other families “who are trying to navigate this awful and often mysterious, challenging disease,” she explains.

“I work with the different programs offered by the Association, and it blows me away that we can offer so many resources to help with this disease,” she explains. “I see firsthand what a difference these programs make in people’s lives. I hope that in my effort to help others, I honor my father, who was one of the most gentle, kind and caring people I have ever known.”

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