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January 16, 2015
News from the Alzheimer's Foundation of America

Alzheimer's Foundation of America Requests Additional Federal Funding for Alzheimer's Disease


As the nation kicked off 2015, Alzheimer's Foundation of America President and CEO Charles J. Fuschillo Jr. penned a letter to President Obama, in which he requested additional federal funding for Alzheimer's disease.

 

Among the specific requests, Fuschillo asked for an additional $500 million for Alzheimer's disease research and $20 million in enhanced investments for caregiving supports and services in the Administration's budget for fiscal year 2016 (FY'16). He also requested $5million in funding to support the Department of Justice's Missing Alzheimer's Disease Patient Alert Program.

 

Fuschillo underscored the need for this funding by emphasizing the disparity between federal dollars spent on Alzheimer's disease and those spent on other disease states including heart disease and cancer. In FY 2013, the National Institutes for Health (NIH) spent approximately $504 million for Alzheimer's disease, while $5.2 billion went to cancer research; $2.9 billion for HIV/AIDS; $2 billion for cardiovascular disease; $1.2 billion for heart disease; and more than $1 billion for diabetes.

 

Without the same investment in combatting dementia, costs will continue to rise at unprecedented rates and promising research will remain unfunded, slowing scientific progress and putting Americans at risk for this terminal disease.

New Congress Brings Changes To Congressional Committees



With the new Congress comes a change in the make-up and leadership of Congressional committees, where much of the policy making in Washington happens. With their victory in November, Republicans now control both the House and Senate. They also assume the majority roles, meaning they have a majority in membership and control the chair (and, therefore, the agenda) of all Congressional committees.

 

While not completely finalized, following are some anticipated changes to the Congressional Committees with the largest impact on Alzheimer's disease stakeholders:

 

Senate Leadership

Sen. Mitch McConnell (R-Ky.) assumes the top mantle as Senate Leader with Sen. John Cornyn (R-Texas), his principal deputy, as Majority Whip. This relegates Sen. Harry Reid (D-Nev.) to Minority Leader and Sen. Richard Durbin (D-Ill.) to serve as Minority Whip.

 

Senate Committees

  • Finance - this Committee has say over Medicare and Medicaid policy. Sen. Orrin Hatch (R-Utah) assumes the chair and Sen. Ron Wyden (D-Ore.) becomes Ranking Member.
  • Appropriations - this is the panel that funds government agencies, including the Department of Health and Human Services, the National Institutes of Health and the Centers for Medicare and Medicaid Services. Sen. Thad Cochran (R-Mich.) will get the gavel while longtime champion against Alzheimer's disease, Sen. Barbara Mikulski (D-Md.) becomes Ranking Member.
  • Special Committee on Aging - while not a legislating committee, this panel often shines a bright spotlight on issues impacting persons with dementia and their family caregivers and takes an active oversight role. Sen. Susan Collins (R-Maine), another champion of Alzheimer's disease causes, will head the Committee. Sen. Claire McCaskill (D-Mo.) becomes the top Democrat.

 

House Leadership

Given that Republicans retained control of the House, there was little shake up over the top leadership slots. Rep. John Boehner (R-Ohio) was again named Speaker of the House with Rep. Mike McCarthy (R-Calif.) as Majority Leader. Top Democrat, Rep. Nancy Pelosi (D-Calif.) will remain as Minority Leader with Rep. Steny Hoyer (D-Md.) as her Minority Whip.

 

House Committees

  • Ways & Means - Rep. Paul Ryan (R-Wis.) assumes the gavel of this powerful Committee with jurisdiction over most federal health programs. Rep. Sander Levin (D-Mich.) becomes Ranking Member.
  • Energy & Commerce - share jurisdiction over Medicare and Medicaid with the House Ways and Means Committee. Rep. Fred Upton (R-Mich.) will become chair and Democrats selected Rep. Frank Pallone (D-N.J.) as Ranking Member.
  • Appropriations - as in the Senate, this Committee holds the purse strings to fund federal agencies. Rep. Hal Rogers (R-Ky.) retains his chair while Rep. Nita Lowey (R-N.Y.) remains as Ranking Member.

AFA will continue to update you on the progress of our ambitious legislative agenda as the 114th Congress continues its work.  

News to Use
Enter the AFA Teens for Alzheimer's Awareness Scholarship Competition

2014 Scholarship Grand Prize Winner Laura McCarter and her Grandad
There is still time to enter AFA's Teens for Alzheimer's Awareness college scholarship competition. The competition is open to teens who will enter a four-year accredited college or university within 12 months of the application deadline, February 15.

Teens are encouraged to share a 1,200-1,500-word essay sharing how Alzheimer's disease has changed or impacted their lives and what they learned about themselves, their families or their communities in the face of coping with the disease.

Last year's winner, Laura McCarter, of Newark, Del., told a heartwarming story that toggled between cherished childhood memories and the realities of caring for a loved one with Alzheimer's disease. She relied on her grandfather's recurring question, "would you like a hard candy?" to paint a picture of love, strength and patience.

Prizes of $5,000, $2,500 an $1,000 will be awarded. For more information, please visit the Young Leaders of AFA website.
News Update
Depression and Behavior Changes May Precede Memory Issues in Alzheimer's Disease

A new study suggests that depression and other behavior changes may be evident in people who will later develop Alzheimer's disease even before they experience memory problems.

 

The study followed 2,416 people age 50+ for up to seven years. All had no cognitive problems at their first visit to one of 34 Alzheimer's disease centers across the country. Nearly 1,200 of the study participants remained cognitively normal during the study. The other 1,218 people developed dementia during the same time period.

 

Those individuals who developed dementia also developed behavior and mood symptoms such as apathy, appetite changes, irritability and depression sooner than the people who did not develop dementia. In addition, the people who developed dementia were more than twice as likely to develop depression sooner than those without dementia and more than 12 times more likely to develop delusions than those without dementia. Read more.
Member Spotlight

Judy Berry

Cokato, Minn.

 

At an age when most people are looking forward to retirement, Judy Berry dove headfirst into a second career. Frustration with the fact that her mother, who was living with dementia, was repeatedly kicked out of care facilities because of aggression, Berry thought there had to be another way.

 

"I knew my mom well enough to realize that the reason she was acting out was that she had needs that weren't being met," Berry recalls. "For example, sometimes, she just wanted someone to sit with her and keep her company, but she wasn't able to express that, so as the caregivers were leaving the room, she might trip them."

 

This realization-that underlying emotional and spiritual needs of individuals with dementia manifest themselves in aggression or other forms of acting out since people with dementia often cannot communicate what they are feeling-led Berry to research other approaches to deliver compassionate dementia care and ultimately, start her own care facility, the Lakeview Ranch, in Dassel, Minn. The Ranch serves individuals who have been unable to remain in other facilities because of aggression and other behavioral issues.  

 

Now, some 15 years later, Berry has sold the ranch and consults with families, professionals and communities, sharing her philosophy of dementia care.

Save The Date!
Friday, May 15, 2015
Concepts in Care Educational Conference

AFA's annual Concepts in Care Educational Conference will take place Friday, May 15, at the New York Hilton.

As always, the conference is free to attend and will feature thre separate "tracks" of study: one for family caregivers, one for professional caregivers and one for individuals with Alzheimer's disease and related illnesses.

Additional details and program agenda will be announced in the coming months.

For more information, or to sponsor or exhibit at the conference, please contact Josie DiChiara at 866-232-8282 or by e-mail.
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Alzheimer's Foundation of America | Phone: 866-232-8484 | Fax: 212-991-6715 | [email protected]| www.alzfdn.org

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