FLORA, MS – Keith Plunkett, Mississippi Paddler and founder of Lucy’s Revenge: The Alzheimer’s Paddling Project made the following statement after the release of the new Facts and Figures report by the Mississippi Chapter of the Alzheimer’s Association:
“These new numbers show that Alzheimer’s is going to be a significant challenge to our Medicaid system in Mississippi in the coming years. We are a rural state with a large number of individuals already on the Medicaid rolls; that number is going to increase exponentially in the next 10-20 years. It is irresponsible for public officials to ignore that fact. I issued a challenge last month to those individuals campaigning for public office to give a percentage of the millions they have raised in campaign funds and assist the roughly seven (7) percent of Mississippians who act as caregivers in this state. I stand by that challenge! A gift of a simple one (1) percent from campaign war chests could give the Mississippi Alzheimer’s Association the ability to provide support to hundreds of thousands of Mississippians. The help could also benefit early diagnosis efforts which may reduce costs to the state in the future. I support public officials who want to cut government spending, but they should also lead the way in showing that private sector giving can help solve our most daunting challenges. Political slogans don’t fix real problems, and developing long-term policy is only part of the equation. These are real Mississippi families with real problems that don’t end after the legislative session is gaveled to a close.”
Showing posts with label Alzheimer's Support Services. Show all posts
Showing posts with label Alzheimer's Support Services. Show all posts
Friday, March 18, 2011
Tuesday, March 15, 2011
New Mississippi Alzheimer's numbers released today show a worsening problem
NEW REPORT SAYS AS MANY AS 198,000 ALZHEIMER’S AND DEMENTIA CAREGIVERS IN MISSISSIPPI
The Mississippi Chapter of the Alzheimer's Association released the 2011 figures for the state today.
In this year’s Facts and Figures report, we see the number of people with the disease growing and the number of friends and family who care for them significantly more than previously reported. The new report reveals there are more than 198,000 Alzheimer’s and dementia caregivers in Mississippi and shedding light on the growing impact of a disease that currently is the sixth-leading cause of death and the only cause of death among the top 10 causes in America without a way to prevent, cure or even slow its progression. In 2010, these caregivers provided over 225 million hours of unpaid care valued at over $2.6 billion. There are an estimated 5.4 million Americans living with Alzheimer’s disease, including 53,000 living in Mississippi alone.
Most people survive an average of four to eight years after a diagnosis, but many can live as long as 20 years with the disease. This prolonged duration often places increasingly intensive care demands on family members and friends who provide care. Most caregivers are family members who take on a tremendous financial, physical and emotional burden to help care for a loved one with Alzheimer’s or a related dementia.
“Alzheimer’s is a significant threat not only for the nation – but also for the people of Mississippi,” said Patty Dunn, executive director of the Alzheimer’s Association Mississippi Chapter. “With a rapidly aging population at increased risk for developing Alzheimer’s and the number of caregivers growing each year, it will become increasingly important for states to be prepared with dementia-capable support services for people at all stages of the disease.”
Alzheimer’s Impact on States
Medicaid covers nursing home care and other long-term care services in the community for individuals who can no longer afford to pay for long-term care expenses. Ensuring access to Medicaid for those who need it must remain a priority for states as they deal with the escalating Alzheimer crisis. Average per-person Medicaid payments for beneficiaries aged 65 and older with Alzheimer’s and other dementias are nine times higher than Medicaid payments for those without the disease. While Medicaid costs are $37 billion today they will climb almost 400 percent by 2050.
At a time when a number of states are facing tremendous budget challenges, the growing Alzheimer’s population will strain state budgets further. Alzheimer’s has profound implications for future state budgets, and states must prepare now to address the multiple and complex challenges that Alzheimer’s poses to individuals, families and state governments, particularly Medicaid.
While only 4 percent of the general population will be admitted to a nursing home by age 80, for people with Alzheimer’s, 75 percent will admitted to a nursing home, posing significant economic challenges to state Medicaid budgets.
More than half of the states in the country have developed or are in the process of developing state plans. These plans will be instrumental in assessing the current impact of Alzheimer’s on Mississippi and outlining what steps Mississippi lawmakers must take in the coming years to improve its services and support to Alzheimer’s families.
“The latest Facts and Figures report shows the significant impact of Alzheimer’s disease – on the individual, the family, and state and federal governments,” said Patty Dunn, executive director of the Alzheimer’s Association Mississippi Chapter. “This is why we urge state policymakers to support the progression and further refinement of the Mississippi Alzheimer’s plan which can help to set goals for a broad range of related issues such as state support of research efforts, financing long-term care, expanding dementia-capable home and community based services and other important issues.”
Importance of Early Detection
Increasing evidence suggests that early diagnosis of Alzheimer’s and timely intervention is beneficial, both for people with the disease and their caregivers. Early diagnosis allows affected people, relatives and their caregivers to plan for the future, obtain medical care to manage symptoms and optimize function, and assists Alzheimer’s families in taking steps to reduce the risk of accidents requiring further medical care. The new report explores the issue of early detection and outlines the various benefits it provides families, including access to valuable support services and resources and also helping to reduce anxiety among caregivers. The Alzheimer’s Association helps newly diagnosed individuals and their families. The Mississippi Chapter offers lunch and learn programs including the Know the Ten Signs campaign as well as several family orientation programs.
“The Alzheimer’s Association is committed to increasing awareness about the importance of early detection and diagnosis,” said Patty Dunn, executive director of the Alzheimer’s Association Mississippi Chapter. “The Family Orientation Program goal is to work with families in the community and connect them to local resources and services that help them to better understand and manage what Alzheimer’s disease introduces into their lives. This knowledge can not only be empowering but extremely helpful to the whole family.”
Delays in diagnosis mean that individuals are not getting treatment in the earlier stages of the disease when they are most effective. They also miss the opportunity to make legal, financial and care plans.
2011 FF ALZ_MS[1]
Alzheimer's caregiver numbers larger than first believed
Report: Alzheimer's caregivers number 15 million
Far more people than previously believed are providing billions of hours of unpaid care for Alzheimer's patients, highlighting the growing impact of a graying population.
Nearly 15 million caregivers — most of them family members but also friends — provide care for people with dementia, says a report being released Tuesday by the Alzheimer's Association.
An estimated 5.4 million Americans have the mind-destroying disease. That it takes so many more people to care for them reflects the burden of an illness that not only robs its sufferers of the ability to do the simplest activities of daily life — but that patients can survive in that increasingly incapacitated state for years, even a decade or two.
"It's too much of a job for any one person," said Dr. William Thies of the Alzheimer's Association. "Even Superman can't do it."
Those caregivers provide 17 billion hours of unpaid care, valued at more than $202 billion. Previously, experts had used a count about a decade ago to estimate that about 10 million caregivers provided 8.5 billion hours of unpaid care for Alzheimer's patients.
Moreover, the time and stress of caring for an Alzheimer's patient takes a physical toll, translating into nearly $8 billion worth of extra health care costs for caregivers, the report says.
There is no known cure, and today's treatments merely help symptoms for a while. While Alzheimer's can strike the middle-aged, it mostly is a disease of older people and thus is expected to skyrocket as the population ages.
Despite all the behind-the-scenes unpaid care, health and nursing home expenditures for dementia patients will reach $183 billion this year, much of it paid by Medicare and Medicaid, the report says.
Far more people than previously believed are providing billions of hours of unpaid care for Alzheimer's patients, highlighting the growing impact of a graying population.
Nearly 15 million caregivers — most of them family members but also friends — provide care for people with dementia, says a report being released Tuesday by the Alzheimer's Association.
An estimated 5.4 million Americans have the mind-destroying disease. That it takes so many more people to care for them reflects the burden of an illness that not only robs its sufferers of the ability to do the simplest activities of daily life — but that patients can survive in that increasingly incapacitated state for years, even a decade or two.
"It's too much of a job for any one person," said Dr. William Thies of the Alzheimer's Association. "Even Superman can't do it."
Those caregivers provide 17 billion hours of unpaid care, valued at more than $202 billion. Previously, experts had used a count about a decade ago to estimate that about 10 million caregivers provided 8.5 billion hours of unpaid care for Alzheimer's patients.
Moreover, the time and stress of caring for an Alzheimer's patient takes a physical toll, translating into nearly $8 billion worth of extra health care costs for caregivers, the report says.
There is no known cure, and today's treatments merely help symptoms for a while. While Alzheimer's can strike the middle-aged, it mostly is a disease of older people and thus is expected to skyrocket as the population ages.
Despite all the behind-the-scenes unpaid care, health and nursing home expenditures for dementia patients will reach $183 billion this year, much of it paid by Medicare and Medicaid, the report says.
Tuesday, September 21, 2010
Report: Alzheimer's disease causes global financial burden
The cost of caring for people with dementia around the world tops $600 billion according to a report released Tuesday. "70 percent of the costs occur in Western Europe and North America," according to the report.
With the release of the World Alzheimer's Report 2010, Alzheimer's Disease International (ADI), a consortium of 73 non-profit Alzheimer's groups from around the world, is trying to raise awareness about the global financial burden caused by dementia.
Each year ADI issues a report on September 21, which has been designated as World Alzheimer's Day.
Last year's annual Alzheimer's report estimated that 35.6 million people would be living with some form of dementia in 2010 and predicted that this number would nearly double in 2030 and reach 115.4 million in 2050.
The new report calculates the cost of medical care as well as the cost of formal services and informal services provided by family members. Researchers estimate the total cost of care just for this year will be $604 billion, which they say is equal to the gross domestic product (GDP) of what would be the 18th largest country or about 1 percent of the world's GDP.
The United States ranks highest when comes to the cost of caring for a person with dementia, which comes to more than $48,000 according to the report. Caring for people with dementia is least costly – just $903 according to the new data – in South Asian countries like Bangladesh and India.
In this report, ADI is calling on all governments to do more to recognize dementia as a health priority and invest more in prevention and developing plans for caring for the millions more who will get this disease in the coming decades.
"The U.S. is unprepared to handle the massive human and economic burden that is building as a result of the growing number of people with Alzheimer's disease," Harry Johns tells CNN. Johns is the president and CEO of the Alzheimer's Association, one of the members of Alzheimer's Disease International. He notes that the U.S. government annually spends $6 billion on cancer research, $4 billion on heart disease research, approximately $3 billion on HIV/AIDS, which he says are all good investments and have led to lives being saved. However, when it comes to Alzheimer's research, Johns notes that funding by the National Institutes of Health is only $469 million per year.
ADI suggests in this report that many governments are unprepared to meet the challenges they face with a growing population of people with dementia. The Alzheimer's Association in the United States points out that 6 other countries, including France, England and Australia do have national Alzheimer's plans, but the United States does not. Legislation called the National Alzheimer's Project has been introduced in Congress.
CNN
With the release of the World Alzheimer's Report 2010, Alzheimer's Disease International (ADI), a consortium of 73 non-profit Alzheimer's groups from around the world, is trying to raise awareness about the global financial burden caused by dementia.
Each year ADI issues a report on September 21, which has been designated as World Alzheimer's Day.
Last year's annual Alzheimer's report estimated that 35.6 million people would be living with some form of dementia in 2010 and predicted that this number would nearly double in 2030 and reach 115.4 million in 2050.
The new report calculates the cost of medical care as well as the cost of formal services and informal services provided by family members. Researchers estimate the total cost of care just for this year will be $604 billion, which they say is equal to the gross domestic product (GDP) of what would be the 18th largest country or about 1 percent of the world's GDP.
The United States ranks highest when comes to the cost of caring for a person with dementia, which comes to more than $48,000 according to the report. Caring for people with dementia is least costly – just $903 according to the new data – in South Asian countries like Bangladesh and India.
In this report, ADI is calling on all governments to do more to recognize dementia as a health priority and invest more in prevention and developing plans for caring for the millions more who will get this disease in the coming decades.
"The U.S. is unprepared to handle the massive human and economic burden that is building as a result of the growing number of people with Alzheimer's disease," Harry Johns tells CNN. Johns is the president and CEO of the Alzheimer's Association, one of the members of Alzheimer's Disease International. He notes that the U.S. government annually spends $6 billion on cancer research, $4 billion on heart disease research, approximately $3 billion on HIV/AIDS, which he says are all good investments and have led to lives being saved. However, when it comes to Alzheimer's research, Johns notes that funding by the National Institutes of Health is only $469 million per year.
ADI suggests in this report that many governments are unprepared to meet the challenges they face with a growing population of people with dementia. The Alzheimer's Association in the United States points out that 6 other countries, including France, England and Australia do have national Alzheimer's plans, but the United States does not. Legislation called the National Alzheimer's Project has been introduced in Congress.
CNN
Monday, August 30, 2010
Lucy’s Revenge Caregiver Chronicles: Ocean Springs Couple Fighting Alzheimer’s With Help of Friends and Family
BY: B. Keith Plunkett
You don’t drown by falling into water. You drown by staying there. -- Robert Allen
 |
| Cindi and Jon Braud |
For many people, Alzheimer’s is an elderly person’s disease. Sadly, this misconception may be why some people don’t give it the attention it deserves when considering worthy causes to support. Despite her busy schedule at IP, Cindi is out to change all that. Alzheimer's is a disease of the brain that causes problems with memory, thinking and behavior. It is the seventh leading cause of death in the country and the fifth leading cause of death for those over age 65. Contrary to public opinion, it is not a normal part of aging and currently the cause of Alzheimer's disease is unknown. What many people don’t understand is that a growing segment of those diagnosed are much younger than 65. Cindi’s husband Jon is among that group. Jon Braud was diagnosed at the age of 40. He is now 42.
Cindi explains that the diagnosis was not a complete surprise. The Ocean Springs couple knew the genetics were there, and that the disease could touch them as it had prior generations of the Braud family. Jon’s father was diagnosed at the age of 44, a mere 23 months before his death. Likewise, Jon’s Grandmother and a cousin were taken by the disease at the ages of 50 and 51, and a Granduncle died just after turning 40. It was because of these familial reasons that Jon and Cindi decided early on not to have children. The chances were simply too great that the Alzheimer’s disease gene would be passed along. Early Onset Alzheimer’s Disease (EOAD) is more about genetics than any other subset of the disease. The couple made a conscious effort to end the disease in the Braud family with Jon.
The decision the Braud’s made to forego having children is an honorable one and one of necessity. It illustrates how Alzheimer’s is not only affecting individuals and their caregivers, but also generations of entire families. Strides have been made in the past decade to ease the affects of Alzheimer’s symptoms with some success, but there is still no cure. Cindi believes the lack of knowledge keeps medical professionals out of the fight. The Braud’s have visited a few medical facilities with less than supportive results. Just last July, Jon’s Neurologist summed up the current lack of medical resources when he told him, “Its Alzheimer’s, I’m sorry there is nothing I can do for you.”
Other facilities also found reasons not to help the Braud’s. The Lou Ruvo Brain Institute in Las Vegas turned the couple away because they did not live in Nevada. An administrator at the famed Mayo Clinic said, “We’re not the miracle hospital everyone thinks we are.” And, the Pennington Bio-Medical Center in nearby Baton Rouge summed up what those with EOAD face in the competitive research money race. Simply put, they said, “There is no money in saving the 1% with the disease.”
But, if there is one thing Cindi Braud is, it is persistent. She, along with 50 family members and friends, has embarked on a crusade to email every medical facility and doctor associated with Alzheimer’s at every University in the country.
“I hope that they will be so inundated with emails regarding Jon and us asking for help that someone might be able to. Squeaky wheel gets the grease,” she said.
Cindi is also hoping to toy with a few egos and the facilities desire to compete for research dollars. She says it has already worked with UCLA.
“UCLA told me there was nothing they could do for us and they referred me to a doctor at UCSD. I emailed UCSD, and they replied with a ‘yes’ as they are doing stem cell research,” says Cindi. “When we concluded our conversation (UCSD) copied the doctor at UCLA (on the email). Within 2 hours I received a phone call from UCLA inviting us out there for research.”
Cindi’s employer has joined in the fight. IP Casino’s Benefits Manager has helped with everything from insurance questions to accommodating Cindi through Family Medical Leave. IP is also donating $10K to the Alzheimer’s Association (ALZ) and will hold signups for teams for an Alzheimer’s Association Memory Walk in November. In January the company will hold an event to promote awareness and provide information for Gulf Coast residents.
The Braud’s are not alone in their inability to find resources. Here in Mississippi, an estimated 148,000 caregivers are working tirelessly to provide for the 53,000 loved ones affected by the disease with little or no support. Only now are medical facilities beginning to recognize the dire need across the state, and that the disease takes a toll not only on the patients, but on those working hard to provide care.
“There is no assistance on the Gulf Coast for our situation,” says Cindi. “When I first called ALZ in September 2009 they asked me if I had my financial affairs in order and had I picked out an assisted living facility. That was unacceptable to me. It’s one of the many reasons I fight so hard.”
“I want to change the way ALZ responds when someone is calling for help,” she added. “When you hear the diagnosis for the first time you already understand the finality of the disease. Tell me who is willing to fight it, cure it…not, ‘have I picked out his tombstone?’.”
Cindi’s investigation into the disease continues to show the need for more awareness in the medical community. She says that people continue to be “shocked” when she tells them her 42-year old husband has the disease, “Most people, including doctors look at me like I’m crazy.”
Studies have been started and stopped over the years with little sharing of information. Cindi says that at least one University, UAB, destroyed the outcome of a retired doctor’s research on the genetics of EOAD.
Cindi relates the story, “In 1998 UAB was conducting a study on Jon’s family and sent his cousin a letter. She was shocked to receive the letter and knew nothing about the study. A med student named Kathryn Hanson came to Baton Rouge to meet with some family members and they never heard from her again. I contacted UAB to see if anything had been concluded with the study. No one knew who Kathryn Hanson was nor did they know about the study.”
Cindi eventually found an email address for one of the doctors mentioned in the study, and he informed her that since his retirement UAB had destroyed his research. Further attempts to get the research or have Jon added to clinical drug qualifications have been unsuccessful.
"Any clinical trial drug qualifications start at the minimum age of 50,” says Cindi. I have yet to find anyone at UAB that can give me any information regarding their study on Jon’s family.”
Jon did not qualify for three other trials at UAB due to his age and they were unwilling to make an exception. The Braud’s have found that going through their doctor and following normal protocol does not get them very far. Yet, they continue to fight.
“My husband’s motto is ‘play to win’,” says Cindi of her former High School and College athlete husband. “It has a new meaning now. I do not stop thinking about this. It’s 24/7 with me. What can I do to help him? Who can I call or write to?”
Despite the numerous setbacks, Cindi’s tenacity has had some pay off. Jon was recently enrolled into the Dominantly Inherited Alzheimer’s Network (DIAN). The world-wide study by Washington University in St. Louis, Missouri is studying Amyloid Beta protein in the brain and the possible connections to Alzheimer’s.
She continues to fight every day. She fights for what little time she has left with Jon, she fights for disability benefits for her husband, and she fights for a doctor to help him. One thing is certain: Cindi Braud does not take no for an answer, and in the fight against Alzheimer’s that is a good thing.
Friday, August 13, 2010
Mississippi Paddler to Visit Gulf Coast’s Most Historic River This Weekend
Flora, MS. August 13, 2010—Keith Plunkett, Mississippi paddler and organizer of Lucy’s Revenge, will be continuing his August effort to paddle the Mississippi Gulf Coast by joining friends on the Pascagoula River August 14.
“I have been very much looking forward to the ‘Singing River’,” said Plunkett. “Part of what we hope to do with this project is not only raise funds for Alzheimer’s support services, but to highlight the beautiful waterways in Mississippi, and how those waterways support wildlife and the environment. You won’t find a better place to highlight conservation in the state than on the Pascagoula. I have my camera batteries fully charged and ready for this one!”
Plunkett kicked off a yearlong effort to paddle over 600 miles of Mississippi waterways in July on the Gulf Coast. He will begin focusing on waterways in the East Mississippi Region in September after finishing the Gulf Coast Region this month.
So far, Plunkett has paddled 127 miles and has been on the coastal waterways of Old Fort Bayou, Davis Bayou, Wolf River and the Escatawpa River. He has raised $2,231 for the Mississippi Chapter of the Alzheimer’s Association in the first month.
“I have been very much looking forward to the ‘Singing River’,” said Plunkett. “Part of what we hope to do with this project is not only raise funds for Alzheimer’s support services, but to highlight the beautiful waterways in Mississippi, and how those waterways support wildlife and the environment. You won’t find a better place to highlight conservation in the state than on the Pascagoula. I have my camera batteries fully charged and ready for this one!”
Plunkett kicked off a yearlong effort to paddle over 600 miles of Mississippi waterways in July on the Gulf Coast. He will begin focusing on waterways in the East Mississippi Region in September after finishing the Gulf Coast Region this month.
So far, Plunkett has paddled 127 miles and has been on the coastal waterways of Old Fort Bayou, Davis Bayou, Wolf River and the Escatawpa River. He has raised $2,231 for the Mississippi Chapter of the Alzheimer’s Association in the first month.
Tuesday, July 13, 2010
ALZHEIMER’S ASSOCIATION LAUNCHES TRIALMATCH. A FIRST-OF-ITS-KIND CLINICAL TRIAL MATCHING SERVICE IN ALZHEIMER’S
Alzheimer’s Association TrialMatchTM Connects People with Alzheimer’s with Potentially Life-Altering Clinical Studies
July 12, 2010, Ridgeland, MS – The Alzheimer’s Association announced today the launch of Alzheimer’s Association TrialMatchTM, a confidential and free tool that provides comprehensive clinical trial information and an individualized trial matching service for people with Alzheimer’s disease and related dementias.
The Internet (www.alz.org/TrialMatch) and phone-based (800-272-3900) service debuted during the Alzheimer’s Association’s 2010 International Conference on Alzheimer's Disease (ICAD) in Honolulu, HI.
As many as 5.3 million Americans are living with the disease, and every 70 seconds someone in America develops Alzheimer’s disease, according to the Alzheimer’s Association’s 2010 Alzheimer’s Disease Facts and Figures.
“Alzheimer’s disease is reaching epidemic proportions with devastating impact on families, and the potential to wreck Medicare, Medicaid and the health care system,” said William Thies, PhD, chief medical and scientific officer at the Alzheimer’s Association. “The immediate need for advances in diagnosis, treatment and prevention has led to an unprecedented need for clinical study participants. This, combined with challenges specific to recruitment and retention of participants with Alzheimer’s, has created a particularly difficult situation for the field. That’s why the Alzheimer’s Association has launched Alzheimer’s Association TrialMatch.”
Recruiting and retaining participants for clinical studies is one of the greatest obstacles to developing the next generation of Alzheimer’s treatments, according to the National Institute on Aging.
“We’re looking to physicians to play a leadership role in referring their patients to clinical trials in Alzheimer’s and dementia,” said Marilyn Albert, PhD, professor of neurology at Johns Hopkins and director of the Division of Cognitive Neuroscience. “As healthcare professionals, there is more we can do to help our patients post-diagnosis. By referring our current patients to trials, we offer access to potential cutting-edge treatments while unlocking the door to potentially more widely available treatments for people with Alzheimer’s in the future.”
No treatments are available to slow or stop the brain cell deterioration that occurs with Alzheimer’s. However, more than 100 clinical studies in Alzheimer’s and dementia are currently taking place and dozens more experimental compounds are moving from the laboratory to clinical testing.
“Families affected by Alzheimer’s need better diagnostic and treatment options now, and the lack of participants in clinical studies is a significant public health issue,” Dr. Thies said. “Alzheimer’s Association TrialMatch is a powerful and user-friendly tool for people with Alzheimer’s, their healthcare professionals, caregivers, and healthy volunteers to learn about and take part in cutting-edge research going on right now. By volunteering for clinical studies, people with Alzheimer’s and their caregivers can play a more active role in their own treatment while also contributing to scientific discovery and benefiting future generations. It is public service in the best possible sense.”
Alzheimer’s Association TrialMatch is a “dementia friendlier” service than others in this space, with Web and phone support, specially trained staff, and tools developed with input from people with Alzheimer’s.
The strength of this Web- and national 800 line-based service is that Alzheimer’s Association TrialMatch contains a comprehensive, constantly updated database of institutional review board-approved Alzheimer’s, mild cognitive impairment and other dementia trials taking place across the U.S. Specialists at the Alzheimer’s Association’s national Contact Center – available 24-hours a day – assist in the process of matching individuals to clinical trials for which they are eligible based on study inclusion/exclusion criteria, diagnosis, treatment history and location. The technology and platform for Alzheimer’s Association TrialMatch is provided by EmergingMed.
Alzheimer’s Association Contact Center specialists 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 profile. Patients and caregivers will be encouraged to share their trial matches with their healthcare professionals to help decide whether a clinical trial is appropriate.
Alzheimer’s Association TrialMatch can be accessed at www.alz.org/TrialMatch or by calling toll-free, (800) 272-3900.
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research, with a vision of a world without Alzheimer’s. The 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. For more information, visit www.alz.org.
July 12, 2010, Ridgeland, MS – The Alzheimer’s Association announced today the launch of Alzheimer’s Association TrialMatchTM, a confidential and free tool that provides comprehensive clinical trial information and an individualized trial matching service for people with Alzheimer’s disease and related dementias.
The Internet (www.alz.org/TrialMatch) and phone-based (800-272-3900) service debuted during the Alzheimer’s Association’s 2010 International Conference on Alzheimer's Disease (ICAD) in Honolulu, HI.
As many as 5.3 million Americans are living with the disease, and every 70 seconds someone in America develops Alzheimer’s disease, according to the Alzheimer’s Association’s 2010 Alzheimer’s Disease Facts and Figures.
“Alzheimer’s disease is reaching epidemic proportions with devastating impact on families, and the potential to wreck Medicare, Medicaid and the health care system,” said William Thies, PhD, chief medical and scientific officer at the Alzheimer’s Association. “The immediate need for advances in diagnosis, treatment and prevention has led to an unprecedented need for clinical study participants. This, combined with challenges specific to recruitment and retention of participants with Alzheimer’s, has created a particularly difficult situation for the field. That’s why the Alzheimer’s Association has launched Alzheimer’s Association TrialMatch.”
Recruiting and retaining participants for clinical studies is one of the greatest obstacles to developing the next generation of Alzheimer’s treatments, according to the National Institute on Aging.
“We’re looking to physicians to play a leadership role in referring their patients to clinical trials in Alzheimer’s and dementia,” said Marilyn Albert, PhD, professor of neurology at Johns Hopkins and director of the Division of Cognitive Neuroscience. “As healthcare professionals, there is more we can do to help our patients post-diagnosis. By referring our current patients to trials, we offer access to potential cutting-edge treatments while unlocking the door to potentially more widely available treatments for people with Alzheimer’s in the future.”
No treatments are available to slow or stop the brain cell deterioration that occurs with Alzheimer’s. However, more than 100 clinical studies in Alzheimer’s and dementia are currently taking place and dozens more experimental compounds are moving from the laboratory to clinical testing.
“Families affected by Alzheimer’s need better diagnostic and treatment options now, and the lack of participants in clinical studies is a significant public health issue,” Dr. Thies said. “Alzheimer’s Association TrialMatch is a powerful and user-friendly tool for people with Alzheimer’s, their healthcare professionals, caregivers, and healthy volunteers to learn about and take part in cutting-edge research going on right now. By volunteering for clinical studies, people with Alzheimer’s and their caregivers can play a more active role in their own treatment while also contributing to scientific discovery and benefiting future generations. It is public service in the best possible sense.”
Alzheimer’s Association TrialMatch is a “dementia friendlier” service than others in this space, with Web and phone support, specially trained staff, and tools developed with input from people with Alzheimer’s.
The strength of this Web- and national 800 line-based service is that Alzheimer’s Association TrialMatch contains a comprehensive, constantly updated database of institutional review board-approved Alzheimer’s, mild cognitive impairment and other dementia trials taking place across the U.S. Specialists at the Alzheimer’s Association’s national Contact Center – available 24-hours a day – assist in the process of matching individuals to clinical trials for which they are eligible based on study inclusion/exclusion criteria, diagnosis, treatment history and location. The technology and platform for Alzheimer’s Association TrialMatch is provided by EmergingMed.
Alzheimer’s Association Contact Center specialists 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 profile. Patients and caregivers will be encouraged to share their trial matches with their healthcare professionals to help decide whether a clinical trial is appropriate.
Alzheimer’s Association TrialMatch can be accessed at www.alz.org/TrialMatch or by calling toll-free, (800) 272-3900.
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research, with a vision of a world without Alzheimer’s. The 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. For more information, visit www.alz.org.
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