TrialMatch® Links People with Dementia, Clinical Studies

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Did you know that the Alzheimer’s Association offers a service called Alzheimer’s Association TrialMatch® that assists people with Alzheimer’s disease and other forms of dementia, their families, and caregivers participate in clinical trials?

TrialMatch®, which is available at no charge and is confidential, provides participants with comprehensive clinical trial information. As the name implies, the service matches people with Alzheimer’s disease and related forms of dementia with existing clinical studies. To date, TrialMatch® has matched more than 11,000 people to Alzheimer’s clinical trials based on their diagnosis, preferences, and location.

TrialMatch® is easily accessible 24 hours a day at http://www.alz.org/trialmatch. TrialMatch Specialists are available via telephone at 800-272-3900, Monday-Friday, 8:00 a.m. – 8:00 p.m. Central time.

The specialists at TrialMatch® will not recommend any particular clinical trial, but will describe all studies for which the person is eligible. They will answer questions about the trial process and connect individuals with trial sites based on their unique profiles.

The Alzheimer’s Association created TrialMatch® because recruiting and retaining participants for clinical studies is one of the greatest obstacles to developing the next generation of Alzheimer treatments. Those with dementia diseases, as well as healthy individuals are needed for a variety of studies. The immediate need for advances in diagnosis, treatment and prevention has led to an unprecedented call for clinical study participants.

Since the service launched in July 2010, more than 85,000 individuals have registered for Alzheimer’s clinical trials. Currently, Alzheimer’s Association TrialMatch® lists 250 research studies with 1000+ local trial sites nationwide.

Why I Walk – Tessa Anderson

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My name is Tessa Anderson, and I Walk to End Alzheimer’s for my grandmother, Theresa Zarbo.

My name, Tessa, means little Theresa, and I am so proud to carry a little piece of my grandmother with me. She was truly a saint every single day—from the moment she was diagnosed to the day she slipped away. Theresa was the hardest working, most intelligent woman I have ever known. She graduated from high school at age 16 and went to Hunter College on a full ride in the 1940s. She was not only a dedicated mother, wife and teacher, but also an artist. We have her artwork all over our family home, from oil paintings to wicker baskets to beautiful afghans.

My family connected as a unit to take care of my grandmother around the clock while she battled this insidious disease. I loved watching her light up while we colored with crayons or played with finger paints. Even though her motor skills were greatly impaired, she still enjoyed expressing herself through art. Alzheimer’s may have taken her brain, but it never stole her spirit. My grandmother never complained and was a courageous soldier throughout the stages of Alzheimer’s. I hope I have inherited her resilience.

You can now register for the 2015 Walks to End Alzheimer’s!

Northern Neck – Middle Peninsula; Saturday, September 19th at Bethpage Camp Resort. Register and donate at bit.ly/NNMPWalkToEndALZ2015

Fredericksburg; Saturday, September 26th at University of Mary Washington. Register and donate at bit.ly/FredericksburgWalkToEndALZ2015

Richmond Walk to End Alzheimer’s; Saturday, November 7th at Innsbrook. Register and donate at bit.ly/RVAWalkToEndALZ2015

NEW ALZHEIMER’S ASSOCIATION REPORT FINDS LESS THAN HALF OF PEOPLE WITH ALZHEIMER’S DISEASE SAY THEY WERE TOLD THE DIAGNOSIS

The Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report, released earlier this week, found that only 45 percent of people with Alzheimer’s disease or their caregivers say they were told the diagnosis by their doctor. In contrast, more than 90 percent of people with the four most common cancers (breast, colorectal, lung and prostate cancer) say they were told the diagnosis.

“The Alzheimer’s disclosure rates are disturbingly low and reminiscent of disclosure rates seen for cancer in 1950s and 1960s when mention of the word cancer was taboo,” said Jeff Baldwin, Communications Director for the Alzheimer’s Association Greater Richmond Chapter. “Sharing the diagnosis early is critical to ensure that the individual can play an active role in their own care – allowing them to benefit from planning and support services that can make it easier to manage the disease.”

“We can, and must do better,” added Baldwin.

The Alzheimer’s Association 2015 Facts and Figures report also found that people with Alzheimer’s or their caregivers were more likely to say they were told the diagnosis by their doctor after the disease had become more advanced. According to the Association, this is a problem because learning the diagnosis later in the course of the progressive brain disease may mean the person’s capacity to participate in decision making about care plans, or legal and financial issues, may be diminished, and their ability to participate in research or fulfill lifelong plans may be limited.

One of the reasons most commonly cited by health care providers for not disclosing an Alzheimer’s diagnosis is fear of causing the patient emotional distress. However, according to the new report, “studies that have explored this issue have found that few patients become depressed or have other long-term emotional problems because of the [Alzheimer’s] diagnosis.”

BENEFITS OF DISCLOSING AN ALZHEIMER’S DIAGNOSIS

According to the Alzheimer’s Association, telling the person with Alzheimer’s the truth about his or her diagnosis should be standard practice. Disclosure can be delivered in a sensitive and supportive manner that avoids unnecessary distress.

The benefits of promptly and clearly explaining a diagnosis of Alzheimer’s have been established in several studies. Benefits include better access to quality medical care and support services, and the opportunity for people with Alzheimer’s to participate in decisions about their care, including providing informed consent for current and future treatment plans. Knowing the diagnosis early enables the person with Alzheimer’s to get the maximum benefit from available treatments, and may also increase chances of participating in clinical drug trials that help advance research.

THE ALZHEIMER’S EPIDEMIC AND ITS IMPACT

The 2015 Facts and Figures report provides an in-depth look at the prevalence, incidence, mortality and economic impact of Alzheimer’s disease and other dementias – all of which continue to rise at staggering rates as the American population ages.

Prevalence, Incidence and Mortality

• According to the report, an estimated 5.3 million Americans have Alzheimer’s disease in 2015, including 130,000 Virginians. Barring the development of medical breakthroughs, the number of Americans with Alzheimer’s disease will rise to 13.8 million by 2050.
• Almost half a million (approx. 473,000) people age 65 or older will develop Alzheimer’s in the U.S. in 2015. Every 67 seconds, someone in the U.S. develops Alzheimer’s. By mid-century, an American will develop the disease every 33 seconds.
• Two-thirds (3.2 million) of Americans over age 65 with Alzheimer’s are women.
• Alzheimer’s disease is the sixth-leading cause of death in the U.S., and the fifth-leading cause of death for those age 65 and older.
• From 2000-2013, the number of Alzheimer’s deaths increased 71 percent, while deaths from other major diseases decreased.
• Heart disease deaths decreased 14 percent; stroke deaths, 23 percent; HIV deaths, 52 percent; prostate cancer deaths, 11 percent; and breast cancer deaths, 2 percent.

Costs and Financial Impact

• Alzheimer’s is the costliest disease to society. Total 2015 payments for caring for those with Alzheimer’s and other dementias are estimated at $226 billion, of which $153 billion is the cost to Medicare and Medicaid alone.
• Total payments for health care, long-term care and hospice for people with Alzheimer’s and other dementias are projected to increase to more than $1 trillion in 2050 (in current dollars).
• In 2014, the 15.7 million family and other unpaid caregivers of people with Alzheimer’s disease and other dementias provided an estimated 17.9 billion hours of unpaid care, a contribution to the nation valued at $217.7 billion (with care valued at $12.17 per hour).
• There are 452,000 Alzheimer’s caregivers in Virginia providing 514,000,000 hours of unpaid care valued at $6,259,000,000.

Full text of the Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report can be viewed at http://www.alz.org/facts.

ALZHEIMER’S ASSOCIATION 2015 ALZHEIMER’S DISEASE FACTS AND FIGURES

The Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the report has become the preeminent source covering the broad spectrum of Alzheimer’s issues. The Facts and Figures report is an official publication of the Alzheimer’s Association.

April Educational Programs – Middle Peninula Northern Neck Area

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April 28th; 6pm-7pm
Conversations About Dementia
Alzheimer’s Association Office – DeHardit House
7335 Lewis Avenue
Gloucester, VA 23061

April 30th; 9am-5pm
Memories in the Making for Professional Caregivers
Markel Building, James Salons A & B
4600 Cox Road
Glen Allen, VA 23060

Pre-Registration Required for All Programs. Pre-Register by calling 804-695-9382 or e-mail ellie.galloway@alz.org. For more information, please visit http://www.alz.org/grva

April Educational Programs – Fredericksburg Area

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April 24th; 10am-2pm
Living with Alzheimer’s: Moderate Stage for Family Caregivers
Dorothy Hart Community Center
408 Canal Street
Fredericksburg, VA 22401

April 30th; 9am-5pm
Memories in the Making for Professional Caregivers
Markel Building, James Salons A & B
4600 Cox Road
Glen Allen, VA 23060

Pre-registration required. Pre-register by calling 540-370-0835 or e-mail lori.myers@alz.org. For more information, please visit http://www.alz.org/grva

April Educational Programs – Richmond and Tri-Cities Area

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April 7th; 11am-1pm
Coping Skills for the Caregiver
Hanover Community Center
14662 Bethany Church Road
Montpelier, VA 23192

April 9th; 10am-2pm
Living with Alzheimer’s: Moderate Stage
Companion Extraordinaire
5311 Lakeside Avenue
Richmond, VA 23228
Light lunch provided

April 14th; 2:30pm-4pm
Effective Communication Strategies
Brandermill Woods Healthcare Center
2100 Brandermill Parkway
Midlothian, VA 23112

April 18th; 8:30am-3pm
Navigating the Maze of Dementia
Good Shepherd Baptist Church
1127 North 28th Street
Richmond, VA 23223

April 23rd; 5:30pm-7:30pm
Understanding and Responding to Dementia-Related Behavior
Colonial Heights Healthcare and Rehab Center
831 Ellerslie Avenue
Colonial Heights, VA 23834

April 25th; 9am-4pm
Dementia Care: Creating a Positive Partnering Experience with Presenter Teepa Snow
University of Richmond Jepson Alumni Center
101 College Road
Richmond, VA 23229

April 30th; 9am-5pm
Memories in the Making for Professional Caregivers
Markel Building, James Salons A & B
4600 Cox Road
Glen Allen, VA 23060

Pre-registration required for all programs. Pre-register by calling 804-967-2580 or e-mail fran.foster@alz.org. For more information, please visit http://www.alz.org/grva

April 2015 Support Groups – Northern Neck and Middle Peninsula

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April 7th; 6pm
For Caregivers
The Orchard
62 Delfae Drive
Warsaw, VA 22572
Respite available with reservation.
Please call Carolyn Costello, 804-615-1117, for more information.

April 8th; 10:30am
For Caregivers
Alzheimer’s Association Office – DeHardit House
7335 Lewis Avenue
Gloucester, VA 23061
No respite available.
Please contact Ted Leonard, 804-642-9189, for more information.

April 14th; 10:30am
For Caregivers
The Orchard
2 Delfae Drive
Warsaw, VA 22572
Respite available with reservation.
Please call Carolyn Costello, 804-615-1117, for more information.

April 16th; 6pm
For Caregivers
Alzheimer’s Association Office – DeHardit House
7335 Lewis Avenue
Gloucester, VA 23061
No respite available
Please call Ellie Galloway, 804-695-9382, for more information.

April 21st; 10:30am
For Caregivers
Harmony Grove Baptist Church
7722 Gen. Puller Hwy
Topping, VA 23169
No respite available.
Please contact Barbara Swain, 804-832-1571, or Lisa Jones, 804-695-9008, for more information.

April 23rd; 10:30am
For Caregivers
Commonwealth Assisted Living
460 S. Main Street
Kilmarnock,VA 22482
Respite care available with reservation.
Please contact Ellie Galloway, 804-695-9382, for more information.