INSIDE THIS ISSUE:
- New Recommendations for Assesing Cognition
- TrialMatch
- OHSU Brain Awareness Lecture Series
- Advocacy Day
- Volunteer Corner
- Contact Information
Research - Our Reason to Hope
A message from Executive Director Kathleen Cody
Currently, there are no survivors of Alzheimer’s disease and there is
no cure. To many, this simple fact alone makes them feel hopeless and
that is understandable. Here at the Association, however, we are very
hopeful about the future – and research is the key to that hope. The
research work of the Alzheimer’s Association is multi-leveled and
extensive, but the overall strategy is straightforward:
We provide funding
We have awarded in excess of $300 million to more than 2,100 projects
since our grant program was started in 1982. We fund investigations
that advance our understanding of Alzheimer’s disease, identify new
treatment strategies, improve care for people with dementia, optimize
services for their families, and further our knowledge of brain health
and disease prevention.
We connect and convene
As the world’s leading Alzheimer’s nonprofit, the Alzheimer’s
Association provides global forums for the greatest minds in
Alzheimer’s science to collaborate, connect across disciplines, and
share new discoveries:
The Alzheimer’s Association International Conference (AAIC) – an
annual event, the world’s largest gathering of Alzheimer’s researchers
and professionals.
The Alzheimer’s Association Research Roundtable – a consortium of
scientists from the pharmaceutical, biotechnology, diagnostics,
imaging and cognitive testing industries, and senior staff and
advisors from the Association.
Alzheimer’s Association International Society to Advance Alzheimer’s
Research and Treatment (ISTAART) – the only professional society
designed exclusively for individuals dedicated to Alzheimer’s and
dementia science.
We collaborate
No single organization can surmount a challenge as great as
Alzheimer’s disease. To help achieve our vision of a world without
Alzheimer’s, we partner with dozens of key stakeholders. Some notable
partnerships:
Our work with the National Institute on Aging (NIA), the primary
federal Alzheimer’s research agency of the National Institutes of
Health.
The Alzheimer’s Disease Neuroimaging Initiative (ADNI), a
groundbreaking investigation to identify and standardize strategies
for earlier diagnosis and disease monitoring. The Alzheimer’s
Association has awarded several million dollars in grants to support
the original ADNI study and its extensions.
We seize opportunities
We use our many connections in the global research community to
identify issues, gaps and opportunities. To help inform, mobilize and
motivate study participants, the Association has launched TrialMatch,
a user-friendly tool to help prospective participants and physicians
identify and connect with appropriate clinical studies.
We advocate
An increase in research funding is critical to forestall both the loss
of life and the crushing financial burden facing our nation – and
advocacy is key to securing more funding for research. The Association
fulfills a vital role as we work to ensure our national policy and
research agendas reflect the importance of Alzheimer’s as a leading
cause of death and disability and an emerging national health care
crisis.
Research is our reason to hope
The Alzheimer’s Association is committed to accelerating the global
effort to eliminate Alzheimer’s disease. We are the largest private,
nonprofit funder of Alzheimer’s research in the world. We believe in
the value of collaboration and maintain hope that we will soon
discover disease-modifying treatments, preventive strategies and a
cure.
Research will be the key to changing the course of this devastating
disease – research is our reason to hope.
Sincerely,
Kathleen Cody
Executive Director, Oregon Chapter
New Recommendations for Assesing Cognition
The Alzheimer’s Association has unveiled new standards to help health
care providers detect cognitive impairment as part of the Medicare
Annual Wellness Visit. While physicians are required to include
detection of cognitive impairment as part of the Medicare Annual
Wellness Visit, until today there has been no comprehensive guidance
to physicians on how to accomplish that.
Detecting possible cognitive impairment is the first step in
determining whether or not further evaluation is needed. In developing
the recommendations, the Alzheimer’s Association convened a group of
experts to survey the current literature and build consensus around an
effective, practical and easy process that could be used in the
primary care setting. The recommendations will be released by the
Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association as
an article online in advance of the hard copy publication.
“We understand that by assessing and documenting cognitive status on
an annual basis during the Annual Wellness Visit, clinicians can more
easily monitor gradual cognitive decline in a patient over time,” said
Bill Thies, Ph.D., Alzheimer’s Association Chief Medical Scientific
Officer. “Through this workgroup process, we now have a comprehensive
recommendation for a brief, step-by-step process to detect cognitive
impairment that includes tools for patients and family members, as
well as an emphasis on vital patient history, self-reported concerns
and clinician observations.”
According to the Alzheimer’s Association’s 2012 Alzheimer’s Disease
Facts and Figures report, among the more than 5 million Americans with
Alzheimer’s, as many as half have not been diagnosed. Without initial
detection, these individuals would not be diagnosed, which would
deprive them of available treatments and services, as well as the
opportunity to make financial and care plans.
“Widespread use of the steps identified by the Alzheimer’s
Association’s Medicare Detection of Cognitive Impairment Workgroup
could make significant inroads in reducing the prevalence of missed or
delayed dementia diagnosis by either establishing a baseline for
cognitive surveillance or a trigger for further diagnostic
evaluation,” Thies added.
While the Workgroup emphasizes in its recommendations that “no one
tool is recognized as the best brief assessment to determine if a full
dementia evaluation is needed,” several tools were found most suited
for assessing cognitive impairment at no cost to the health care
provider during the visit. These include the Mini-Cog™, the Memory
Impairment Screen (MIS), and the General Practitioner Assessment of
Cognition (GPCOG).
The Workgroup concluded that formal observation alone was not enough
to assess cognitive impairment. Instead, the Workgroup determined
multiple sources of clinical information should be included, such as:
*Review of patient Health Risk Assessment
*Clinical observation
*Use of structured assessments for both patient and spouse/family members
Full text of the “Alzheimer’s Association Recommendations for
Operationalizing the Detection of Cognitive Impairment during the
Medicare Annual Wellness Visit in a Primary Care Setting,” can be
viewed at www.alz.org/physicians and will also be published in an
upcoming issue of Alzheimer’s & Dementia: The Journal of the
Alzheimer’s Association.”
Register for TrialMatch and Help Us Find a Cure for Alzheimer's
Since its debut during the Alzheimer’s Association International
Conference 2010, Alzheimer’s Association TrialMatch has matched more
than 3,000 people to Alzheimer’s clinical trials based on their
diagnosis, preferences and location. The internet and phone-based
service provides comprehensive clinical trial information and an
individualized matching service for people with Alzheimer’s disease or
related dementias, their caregivers, family members and doctors.
There are as many as 5.4 million Americans living with the disease and
every 68 seconds someone in America develops Alzheimer’s disease. The
annual total number of new cases of Alzheimer’s and other dementias is
projected to double by 2050.
Alzheimer’s Association TrialMatch is easy to use, with web and phone
support, specially trained staff and tools developed with input from
people with Alzheimer’s. Since the service launched in July 2010, more
than 13,000 individuals have registered to search for Alzheimer’s
clinical trials.
Currently, Alzheimer’s Association TrialMatch lists 131 research
studies with 545 local trial sites nationwide.
You can access TrialMatch online at www.alz.org/TrialMatch or by
calling 1-800-272-3900. Complete a brief questionnaire, either online
or over the phone, to create a profile. Based on eligibility criteria
(i.e., diagnosis, treatment history, location), the Alzheimer’s
Association will match your unique profile to its clinical trial
database.
With your permission, an Alzheimer’s Association specialist will
contact you to provide unbiased trial result options and trial site
contact information. Specialists will not recommend any particular
trial, but will help you identify trials that match your specific
eligibility and criteria. Alzheimer’s Association TrialMatch
specialists are available from 7 am to 7 pm CT, Monday through Friday.
The OHSU Brain Institute Presents 2013 Brain Awareness Lecture Series
The OHSU Brain Institute is once again presenting its Brain Awareness
Lecture Series. This year’s theme is Mysteries of the Mind – What are
we learning about the hidden secrets of the brain?
All lectures begin at 7 p.m. at the Newmark Theater, 1111 SW Broadway,
Portland. To learn more and purchase tickets visit
www.ohsubrain.com/bas.
OHSU Brain Institute is a national leader in neuroscience patient
care, research and education. It provides the most comprehensive care
of neurological illness in the Pacific Northwest. Its nationally
recognized neurological programs and centers offer comprehensive
clinical and surgical services that are available nowhere else in
Oregon. Its advanced research and clinical trial opportunities
ultimately provide new treatment options, earlier detection and
improved quality of life for patients.
Speak Your Mind - Take Action
The Oregon Chapter needs your help to ensure our elected officials
understand the impact of Alzheimer’s on Oregon families. There are two
exciting opportunities for you to make a difference for every
Oregonian impacted by this devastating disease.
On March 5th, join us for our Chapter’s 2013 Alzheimer’s Advocacy Day
at the State Capitol in Salem. We will arrange meetings with your
state legislators, give you all the training you need, and provide
lunch. There, you will urge legislators to vote for a resolution in
support of the State Plan for Alzheimer’s Disease in Oregon, and for
funding for services such as Oregon Project Independence and
Gatekeeper.
We are also launching a brand new volunteer opportunity for people who
want to make more of a difference in state policies that affect
Alzheimer’s care and services. We’re calling this role the Alzheimer’s
Association State Ambassador, and in this role, volunteers will build
relationships with specific members of the state legislature and raise
public awareness of Alzheimer’s in their local media.
To RSVP for the Advocacy Day, and to volunteer to be a State
Ambassador, please visit www.alz.org/oregon/action or contact Jon
Bartholomew, Public Policy Director, at jon.bartholomew@alz.org or
503-416-0202.
Volunteer Corner
We had a great 2012 full of committed volunteers who generously shared
their skills, passion, and thousands of hours. We’re looking forward
to making room for even more volunteers to join our team in 2013!
Volunteers fill a variety of roles with us. If you’re interested in
joining our team, please contact Sam Ellingson, Community Engagement
Manager, at 503.416.0213 or sam.ellingson@alz.org.
Contact information
Reporters: Please feel free to use any of the information in our newsletter or on this website in your stories. We would appreciate credit being given to the Alzheimer’s Association Oregon Chapter for articles or materials used. Whenever appropriate please include the phone number for our 24/7 Helpline, 1.800.272.3900.
If you need additional information, or would like to schedule an interview, please contact Policy Director Jon Bartholomew at 503.416.0202 or at jon.bartholomew@alz.org.
