National Caregiving Foundation

“There are only four kinds of people in this world.  Those who have been caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers.” 

Rosalynn Carter, Former First Lady

         

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EVERY 70 SECONDS SOMEONE IN AMERICA DEVELOPS ALZHEIMER'S DISEASE.

 

APRIL 2011                                ALZHEIMER'S RESEARCH NEWS

Five new genes have been identified by scientists that are believed to raise the risk of late onset Alzheimer’s disease. 

This brings the total genes identified to ten.   Researchers hope this finding will lead to treatments that remove the

detrimental effects of these genes and help reduce the proportion of people developing Alzheimer’s disease.

 

 

NEW INFORMATION FOR VETERANS

 

VETERANS CRISIS LINE  -- DIAL 1-800-273-8255  CONFIDENTIAL HELP FOR VETERANS.

 

The Department of Veterans' Affairs announced the launch of a

new toll-free National Caregiver Support Line:   1-855-260-3274

Operates                   8:00 a.m. - 11:00 p.m. Monday through Friday and

                                   10:30 a.m. - 6:00 p.m.  Saturday     -   Eastern Time

Licensed clinical social workers will be available to answer your questions, listen to your concerns and directly link

you to the Caregiver Support Coordinator at your local VA Medical Center.  Each VA Medical Center has a

Caregiver Support Coordinator who can locate assistance tailored to your unique situation.

 

                                                    

SOCIAL SECURITY CHANGES

The Social Security Administration will no longer mail annual Social Security statements to workers. 

They expect to save an estimated $30 million in 2011 and $60 million in 2012 by suspending these mailings.

Also Social Security will no longer mail checks to recipients who apply for benefits after May 1, 2011. 

The funds will be handled by direct deposit to a bank or credit union or put on a prepaid

Direct Express Debit MasterCard.

 

MEDICATION MISTAKES

These ten medication mistakes experts say are most likely to kill or cause serious harm

according to recent article by Melanie Haiken:

Confusing 2 medications with similar names

Taking drugs that magnify potential side effects

Overdosing with similar drugs

Getting the dosage wrong

Mixing alcohol with medications

Taking brand name drug and generic version at the same time

Taking RX drugs and over-the-counter alternative

Not understanding interactions between medications

Failing to adjust dosages after losing kidney, liver

Taking a medication that's not safe for your age

 

News from Mount Sinai School of Medicine on Alzheimer's Disease Studies

Studies suggest that elderly people with Type 2 diabetes are twice as likely to develop Alzheimer’s disease. 

Scientists with the Mount Sinai School of Medicine believe a gene associated with the onset of Type 2 diabetes

is found at lower than normal levels in people with Alzheimer’s disease.  They are continuing research in the

hopes of new approaches to prevention and treatment.

 

Medicare News--Annual Wellness Exam

How often is it covered?

After you’ve had Part B for longer than 12 months, you can get a yearly wellness exam to develop or update a prevention plan just for you, based on your current health and risk factors. This exam is covered once every 12 months.

Who’s eligible?

All people with Medicare. If you got the “Welcome to Medicare” physical exam, you have to wait 12 months before you can get your first yearly wellness exam.

Your costs in Original Medicare

You pay nothing for the yearly wellness exam.

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A new study at the Columbia University College of Physicians and Surgeons in New York                   revealed promising results that High HDL-C levels in elderly individuals may be associated                       with a decreased risk of Alzheimer’s Disease.

 Article available online by the Archives of Neurology (December 2010 issue) at

http://archneur.ama-assn.org/cgi/content/full/67/12/1431

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Maria Shriver's recently released report,  A Woman's Nation Takes on Alzheimer's,

emphasizes the fact that women are at the core of the Alzheimer's epidemic. 

Nearly 2/3rds of all people with Alzheimer's Disease are women,

Almost 60% of caregivers for people with Alzheimer's are women.

 

NEWS FROM MEDICARE  

Closing the Prescription Drug Coverage Gap

You Could Be Eligible For A $250 Rebate This Year to Help with your Medicare Drug Costs ………. 

The Affordable Care Act passed by Congress and signed by President Obama this year contains some important benefits for Medicare recipients. If you have Medicare prescription drug coverage, and aren’t already getting Medicare Extra Help, Medicare will automatically send you a tax free, one-time $250 rebate check after you reach the coverage gap (also called the “donut hole”) in 2010. This rebate is the first step toward closing the Medicare prescription drug coverage gap.

Will I need to do anything to get this rebate check? No. There are no forms to fill out. Medicare will automatically send a check that’s made out to you. You don’t need to provide any personal information like your Medicare, Social Security, or bank account numbers to get the rebate check. DON’T GIVE YOUR PERSONAL INFORMATION TO ANYONE WHO CALLS YOU ABOUT THE $250 REBATE CHECK. Call 1-800-MEDICARE (1-800-633-4227) to report anyone who does this. TTY users should call 1-877-486-2048

When will I get the rebate check? If you reach the coverage gap this year and enter the Part D “donut hole”, you will receive a one-time $250 rebate check if you are not already receiving Medicare Extra Help. These checks began mailing to beneficiaries in

mid-June 2010.  Checks will be mailed monthly throughout the year as beneficiaries enter the coverage gap. However, this is a one-time benefit and if you qualify, you will only receive one check after you reach the coverage gap. 

Will I have to pay taxes on this rebate check? No. You don’t have to pay taxes on your $250 rebate check. It is tax free.  

What if I don’t get the rebate check when I should? If you hit the donut hole after the program has begun, you should expect to receive your check within 45 days. Your rebate may be delayed if Medicare doesn’t have information from your Medicare drug plan showing that you reached the coverage gap in time to include you in the next mailing. You should call your Medicare drug plan to make sure all of your information has been sent to Medicare. If you don’t get your rebate check, contact Medicare at 1‑800‑MEDICARE. Individuals receiving Medicare Extra Help will not receive a rebate check. You can also check to make sure Social Security has your correct home address. Call 1-800-772-1213 or your local Social Security office. TTY users should call 1-800-325-0778.

 What’s Next…Coming in 2011 If you reach the coverage gap in 2011, you will get a 50% discount on your brand name prescription drugs at the time you buy them, unless you are already getting Medicare Extra Help. Stay tuned for more information from Medicare. Help us spread the word about this important benefit

And help stop scams against seniors Pass this information along to your friends, neighbors and family so they know the facts about this important program. Remember—there are no forms to fill out to receive this benefit once you qualify for it. Medicare will automatically send a check that’s made out to you. You don’t need to provide any personal information like your Medicare, Social Security, or bank account numbers to get the rebate check. Don’t give your personal information to anyone who calls you about the $250 rebate check. Call 1-800-MEDICARE (1‑800-633-4227) to report anyone who does this. TTY users should call 1‑877‑486-2048. Go to stopmedicarefraud.gov to learn more about how Medicare is working with law enforcement to stop scams against seniors.

Have other questions about the $250 rebate check or the Affordable Care Act and Medicare?   You can also visit www.medicare.gov, or call 1-800-MEDICARE.

  
   

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 Official Summary of the National Alzheimer’s Project Act (NAPA)

Senator Evan Bayh and Representative Edward Markey (S. 3036/H.R. 4689)

 2/24/2010- Introduced.National Alzheimer's Project Act – (NAPA)

Establishes in the Office of the Secretary of Health and Human Services (HHS) the

Office of the National Alzheimer's Project to:

(1) accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer's;
(2) create and maintain an integrated national plan to overcome Alzheimer's;
(3) help to coordinate the health care and treatment of citizens with Alzheimer's;
(4) ensure the inclusion of ethnic and racial populations that are at higher risk for Alzheimer's or that are least likely to receive care in clinical, research, and service efforts with the purpose of decreasing health disparities;
(5) coordinate with international bodies to integrate and inform the fight against Alzheimer's globally; and
(6) provide information and coordination of Alzheimer's research and services across all federal agencies. Sets forth the duties of the Director of the Office, including to use discretionary authority to evaluate all federal programs concerning Alzheimer's. Establishes in the Office an Advisory Council on Alzheimer's Research and Treatment.   Contact your congressman to encourage passage of this bill.

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Fluid test could reveal Alzheimer's

A Press Association release regarding an Alzheimer's marker in fluid drawn from the spine can reveal early signs of the disease in healthy adults years before any symptoms appear, new research suggests.

The spinal tap test was 90% accurate in identifying Alzheimer's in patients already diagnosed with the disease.

But it also produced positive readings in 72% of people with mild mental impairment, and 36% of apparently normal individuals showing no signs of dementia.

The test relies on three protein "biomarkers" linked to Alzheimer's in cerebrospinal fluid.

Scientists found that people with different levels of mental impairment had different amounts of the proteins.

The researchers analysed data from 114 older adults whose brain functioning was normal, 200 who had mild levels of mental impairment, and 102 who had confirmed Alzheimer's disease.

Their findings were published in the journal Archives of Neurology.

The authors, led by Dr Geert De Meyer, from Ghent University in Belgium, wrote: "The initiation of the Alzheimer's disease pathogenic process is typically unobserved and has been thought to precede the first symptoms by 10 years or more. Therefore, demonstrating that Alzheimer's disease biomarkers are true indicators of the pathogenic process at an early stage is a major challenge."

The results were confirmed by post-mortem studies of dead patients who had suffered from Alzheimer's, and following up patients who developed the disease over five years.

Finding the Alzheimer's signature in more than a third of "normal" individuals indicated the disease was detectable earlier than was previously thought possible, said the researchers.

While there is no cure for Alzheimer’s Disease, at the moment, this could be an early warning of what is to come as life expectancy gets longer due to other medical advances. 

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ASSISTED LIVING FACILITIES

Recent statistical numbers show assisted living facilities at a national median monthly rate of $3,185.00.  A 12 percent increase over 2009 and a 5 year growth rate of 6.7 percent.

 Other rates are currently: 

bullet $60.00 an hour for adult day care
bullet $18.00 an hour for homemaker services and personal care assistants
bullet $185.00 daily for a semi-private nursing facility room
bullet $206.00 daily rate for a private room in a nursing facility

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 CAREGIVERS CAN RECOGNIZE UNSAFE DRIVERS

 According to the American Academy of Neurology a new guideline can help determine when people with Alzheimer's disease or other types of dementia should stop driving by having Caregivers and family members identify warning signs.

These warning signs include:

bullet Decreased miles being driven
bullet Collisions
bullet Moving violations
bullet Avoiding certain driving situations, such as driving at night or in the rain
bullet Aggressive or impulsive personality traits

  Most elderly underestimate their own safe driving abilities. 

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YOU SHOULD KNOW…………..

You can receive unemployment benefits and Social Security at the same time in 45 states.  However, the states of Illinois, Louisiana, South Dakota, Utah and Virginia reduce your unemployment compensation by 50 percent of what you receive in Social Security retirement funds thereby eliminating most if not all of your unemployment benefits.  For example, if your Social Security benefit is $200 a week then $100 a week is subtracted from your weekly unemployment insurance check.

 

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The White House

Office of the Press Secretary

For Immediate Release
May 05, 2010
 

Remarks by the President at Signing of Caregivers and Veterans Omnibus Health Services Act

State Dining Room

1:29 P.M. EDT

THE PRESIDENT:  Good afternoon, everyone.  Danny Akaka, aloha.  (Laughter.)  Since the 9/11 attacks more than eight years ago, the United States has been a nation at war.  In this time, millions of Americans have worn the uniform.  More than a million have served in Afghanistan and Iraq.  Many have risked their lives.  Many have given their lives.  All are the very embodiment of service and patriotism.  And as a grateful nation, humbled by their service, we can never honor these American heroes or their families enough.

Along with their loved ones, we give thanks every time our men and women in uniform return home.  But we’re forever mindful that our obligations to our troops don’t end on the battlefield.  Just as we have a responsibility to train and equip them when we send them into harm’s way, we have a responsibility to take care of them when they come home. 

As Michelle and Dr. Biden have reminded us in all their visits to military bases and communities, our obligations must include a national commitment to inspiring military families —- the spouses and children who sacrifice as well. 

We have a responsibility to veterans like Ted Wade, who joins us here today with his wonderful wife Sarah.  We are so proud of both of them.  Six years ago, Sergeant Wade was serving in the 82nd Airborne Division in Iraq when his Humvee was struck by an IED, an improvised explosive device.  He lost much of his right arm and suffered multiple injuries, including severe traumatic brain injury.  He was in a coma for more than two months, and doctors said it was doubtful that he would survive.  
But he did survive -- thanks to the care he received over many months and years, thanks to Ted’s indomitable spirit, and thanks to the incredible support from Sarah, who has been at his side during every step of a long and very difficult recovery.  As I’ve said many times, our nation’s commitment to our veterans and their families —- to patriots like Ted and Sarah —- is a sacred trust, and upholding that trust is a moral obligation.

Since taking office, my administration -— in partnership with many -- the veterans organizations who are here today —- has worked to make sure that America fulfills this obligation.  We’ve dramatically increased funding for veterans’ health care, including our wounded warriors, especially those with the signature wounds of today’s wars -— post-traumatic stress and traumatic brain injury.  Under Secretary Ric Shinseki’s outstanding leadership, we’re building a 21st century VA, including budget reform to ensure predictable funding, and a historic increase in the VA budget.

But as we all know, keeping faith with our veterans and their families is work that is never truly finished.  As a nation, as the beneficiaries of their service, there’s always more we can do and more that we must do.  And that’s what we’re doing today, as I sign this important legislation —- the Caregivers and Veterans Omnibus Health Services Act.

With this legislation, we’re expanding mental health counseling and services for our veterans from Afghanistan and Iraq, including our National Guardsmen and Reservists.  We’re authorizing the VA to utilize hospitals and clinics outside the VA system to serve more wounded warriors like Ted with traumatic brain injury. 

We’re increasing support to veterans in rural areas, with the transportation and housing they need to reach VA hospitals and clinics.  We’re expanding and improving health care for our women’s veterans, to meet their unique needs, including maternity care for newborn children.  And we’ll launch a pilot program to provide child care for veterans receiving intensive medical care. 
We’re eliminating co-pays for veterans who are catastrophically disabled.  And we’re expanding support to homeless veterans, because in the United States of America, no one who has served this nation in uniform should ever be living on the streets.

Finally, this legislation marks a major step forward in America’s commitment to families and caregivers who tend to our wounded warriors every day.  They’re spouses like Sarah.  They’re parents, once again caring for their sons and daughters.  Sometimes they’re children helping to take care of their mom or dad.   

These caregivers put their own lives on hold, their own careers and dreams aside, to care for a loved one.  They do it every day, often around the clock.  As Sarah can tell you, it’s hard physically and it’s hard emotionally.  It’s certainly hard financially.  And these tireless caregivers shouldn’t have to do it alone.  As of today, they’ll be getting more of the help that they need.

If you’re like Sarah —- and caring for a severely injured veteran from Afghanistan or Iraq —- you’ll receive a stipend and other assistance, including lodging when you travel for your loved one’s treatment.  If you need training to provide specialized services, you’ll get it.  If you need counseling, you’ll receive it.  If you don’t have health insurance, it will be provided.  And if you need a break, it will be arranged —- up to 30 days of respite care each year.

So today is a victory for all the veterans’ organizations who fought for this legislation.  It’s a tribute to those who led the fight in Congress, including Senator and World War II vet Danny Akaka, and Senator Richard Burr; and in the House, Representatives Mike Michaud and Bob Filner.  And I thank all the members of Congress who are joining us here today.

Most of all, today is a victory for veterans like Ted and caregivers like Sarah, who, by the way, has become a passionate and very effective voice on behalf of wounded warriors and their families.  Testifying before Congress, she said of her husband, “Just like he needed a team in the military to accomplish the mission, he needs a team at home in the longer war.”

So to Ted, and to Sarah, to all our veterans and your families, with this legislation we’re building a stronger team here at home that you need —- now and for the long road to recovery.  And that’s why I’m very much looking forward to signing this legislation.  Thank you. 
 ..........

Elder Justice Act and the Patient Safety and Abuse Prevention Act

 

Final Congressional approval was given and then signed into law for the Elder Justice Act and the Patient Safety and Abuse Prevention Act as part of health care reform legislation.  The Elder Justice Act was added into the Senate health care bill by Senator Blanche Lincoln (D-Arkansas) a co-author of the measure and a member of the Finance Committee.  The bill's sponsor was Senator Orrin Hatch (R-Utah).  The Patient Safety Legislation was added by Senator Debbie Stabenow (D-Michigan) on behalf of the bill's author Senator Herb Kohl (D-Wisconsin).

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Social Security News:                

Early-Onset Alzheimer's disease will be included in the New Compassionate Allowance Conditions set by the Social Security

Administration according to Michael J. Astrue, Commissioner of Social Security.  Mr. Astrue said, " The expansion we are announcing today means tens of thousands of Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years. "There can be no higher priority than getting disability benefits quickly to those Americans with these severe and life-threatening conditions."

 

These 38 New Compassionate Allowance Conditions go into effect March 1, 2010:

 

  1.   Alstrom Syndrome

  2.  AmegakaryocyticThrombocytopenia

  3.  Ataxia Spinocerebellar

  4.  Ataxia Telangiectasia

  5.  Batten Disease

  6.  Bilateral Retinoblastoma

  7.  Cri du Chat Syndrome

  8.  Degos Disease

 9.  Early-Onset Alzheimer's Disease

10.  Edwards Syndrome

11.  Fibrodysplasia Ossificans Progressiva

12.  Fukuyama Congenital Muscular Dystrophy

13.  Glutaric Acidemia Type II

14.  Hemophagocytic Lymphohistiocystosis (HLH), Familial Type

15  Hurler Syndrome, Type IH

16  Hunter Syndrome, Type II

17.  Idiopathic Pulmonary Fibrosis

18.  Junctional Epdermolysis Bullosa, Lethal Type

19.  Late Infantile Neuronal Ceroid Lipofuscinoses

20.  Leigh's Disease

21.  Maple Syrup Urine Disease

22.  Merosin Deficient Congenital Muscular Dystrophy

23,  Mixed Dementia

24.  Mucosal Malignant Melanoma

25.  Neonatal Adrenoleukodystrophy

26.  Neuronal Ceroid Lipofuscinoses, Infantile Type

27.  Niemann-Pick Type C

28.  Patau Syndrome

29.  Primary Progressive Aphasia

30.  Progressive Multifocal Leukoencephalopathy

31.  Sanfilippo Syndrome

32.  Subacute Sclerosis Panencephalitis

33.  Tay Sachs Disease

34.  Thanatophoric Dysplasia, Type 1

35.  Ullrich Congenital Muscular Dystrophy

36.  Walker Warbug Syndrome

37. Wolman Disease

38.  Zellweger Syndrome

 

For more information:  www.socialsecurity.gov/compassionateallowances

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"Caregiving can be a lonely, exhausting experience-- but it still can be a spiritually-enriching one.  Here are seven ways to help you get there according to Verna Benner Carson, PhD., Rev. Lois Knutson and Beth Witrogen:

Believe that caregiving is a calling.  Looking at caregiving as an appointed or God-given task makes it inherently meaningful from the get-go.   

Treat the mundane as the sacred.  Every task, from sorting paperwork to preparing food, can become meaningful if it's endowed with love and a passion to dignify another human being.

Maintain disciplines of reflection.  Keeping a journal of thoughts and feelings, for example, can help caregivers become more self-aware and make them more likely to manage emotions better from day to day.

Pray or meditate.  Contemplative practices provide time for much needed quiet, outlets for releasing stress and connections to a wider universe.

Care for the body.  Getting sufficient sleep, nutrition, exercise and recreation help create conditions in which caregiving can be more rewarding than draining.

Repeat helpful truths.  Saying the same affirming statements to oneself on  a regular basis provides positive structure to a day and keeps the mind from slipping into destructive negativity.

Remember that attitude is a choice.  Determine each day to view caregiving more as an opportunity for growth rather than an undeserved burden.  This sets the stage for joy and hope to color the experience."

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Recent news on Alzheimer's Disease

Failed Drug Trials are Disappointing

Alzheimer's drug researchers served up a string of bad news at the International Conference on Alzheimer's Disease, presenting one failed trial after another.

None of these strategies tested--such as blocking amyloid, improving insulin sensitivity in the brain, or even doubling up on agents that improve synaptic signaling--was able to alter the steady rate of cognitive and functional decline in patients with mild to moderate Alzheimer's.

Instead of searching for the compound that will alter the so-far inevitable decline seen in Alzheimer's, the key will probably be preventing the disease from taking hold in the first place, Samuel Gandy, MD, PhD said.

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bulletAlzheimer and Caregiver assistance proposals being considered in Congress:

HR 519 Elder Caregiver Support and Information Enhancement Act of 2009 provides for additional appropriations for FY 2010 - FY 2012 for the family caregiver support program.

HR 769  Social Security Caregiver Credit Act of 2009 if passed this legislation would amend the Social Security Act to give wage credits for up to 5 years of caring for a dependent  relative, no actual pay is given, but the credit could significantly increase a caregiver's Social Security benefit amount. 

HR 1192 Alzheimer's Family Assistance Act of 2009.  If enacted would amend the IRS Code to allow a tax credit for family caregivers of spouses and dependents who have long-term care needs as well as a tax deduction for long-term care insurance contracts.

S 697 Community Living Assistance Services and Supports Act (CLASS)  A bill to amend the Public Health Service Act to help individuals with functional impairments and their families pay for services and supports that they need to maximize their functionality and independence and have choices about community participation, education, and employment, and for other purposes. 

H.R.3286  To amend the Public Health Service Act to fund breakthroughs in Alzheimer's disease research while providing more help to caregivers and increasing public education about prevention.                        

                                                                                                                                                           
S.1492  A bill to amend the Public Health Service Act to fund breakthroughs in Alzheimer's disease research while providing more help to caregivers and increasing public education about prevention.

S.RES.185  A resolution supporting the goals and ideals of National Alzheimer's Disease Awareness Month and National Memory Screening Day, including the development of a national health policy on dementia screening and care.                                                                                                                                                            
H.R.2987  To amend the Public Health Service Act to ensure sufficient resources and increase efforts for research at the National Institutes of Health relating to Alzheimer's disease, to authorize an education and outreach program to promote public awareness and risk reduction with respect to Alzheimer's disease (with particular emphasis on education and outreach in Hispanic populations), and for other purposes.                                                                                                                                                                             
H.R.632   To encourage, enhance, and integrate Silver Alert plans throughout the United States, to authorize grants for the assistance of organizations to find missing adults, and for other purposes.
 

H.R.908   To amend the Violent Crime Control and Law Enforcement Act of 1994 to reauthorize the Missing Alzheimer's Disease Patient Alert Program.

S.1555   A bill to establish the Office of the National Alzheimer's Project. 

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bullet Georgetown University Medical Center researchers released study results indicating that a class of Alzheimer’s disease drugs appears to be effective in the treatment of traumatic brain injury.  These animal test results show that this class of drugs could possibly prevent the long-term damage from a serious brain injury.  Researchers hope to soon test these drugs with patients who have traumatic brain injury. For detailed information on this and other research check out the Georgetown University Medical Center website: http://memory.georgetown.edu
bullet For Information on all clinical trials go to:   http://www.clinicaltrials.gov/
bullet CPHPC is a new drug developed by Researchers at University College London's dementia research unit to benefit Alzheimer’s patients.   CPHPC was found to remove a protein, SAP (serum amyloid P component), and thought to be involved in the disease.  Findings that CPHPC removed the protein from the brain without any side effects are the result of a study of five patients over a three month period.  Researchers are encouraged and believe the results warrant more extensive clinical study of CPHPC.
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Last modified: 01/23/12