The Connection
A Newsletter for People Coping With Memory Loss
Date: April 2010
Volume # 1
Issue # 4
Greetings:
Since the last newsletter, there have been many momentous events for Alzheimer’s advocacy. Thank
you to those of you who were able to attend either the Action Summit in Washington, DC or Advocacy
Day in Springfield, IL this past March. Your voice is important to continue to show a new face of
Alzheimer’s disease. If you attended and would like to share your experience for the next issue of
this newsletter, please contact me directly.
847.933.2413
1.800.272.3900
www.alz.org/illinois
8430 West Bryn Mawr Avenue
Suite 800
Chicago, Illinois 60631
• You will benefit from more effective communication among medical and community care providers.
• A Medicare pilot project will provide services to seniors at a high risk of reentering the hospital.
• Federal Medicaid payments will increase for those states that provide home- and community-based
services to individuals who are otherwise eligible for nursing home care.
• The current “coverage gap” or “donut hole” where Medicare stops paying part of the costs of prescription
drugs, requiring recipients to pay the full cost themselves, will be phased out by 2020. And, in 2010, all
beneficiaries who reach the coverage gap will receive a $250 rebate.
• All prescription drug cost sharing under Medicare Part D will be eliminated for individuals who are on
both Medicare and Medicaid and are receiving home- and community-based services.
• A new voluntary insurance program will provide benefits that can be used to pay for such things as
home modifications, assistive technology, accessible transportation, homemaker services, respite care,
personal assistance services, and home care aides.
• A new medical research program will focus on developing treatments and cures for high-need diseases.
• Individuals with younger-onset Alzheimer’s disease often have a difficult time getting and keeping private
health insurance; therefore the federal government will now provide premium subsidies to low- and
moderate income individuals to help them purchase insurance.
• Insurance companies will be required to end the pre-existing condition exclusions and end the practice of
rescinding the insurance coverage of high-cost individuals.
Toolbox: New Early Stage Section on Website
We are excited to announce a new section of our website
dedicated to Early Stage/Young Onset. So many rich resources
exist on our national and local Chapter sites. Now you can
access the information you need at your fingertips in an easyto-navigate way. Please visit www.alz.org/illinois and click on
“Early Stage” in the left toolbar.
Each topic button opens a new web page so you never have
to worry about navigating away from the main page. Some
buttons open helpful documents for you to read and print and
some buttons open a new web page to a section of the website
that provides valuable information. We want your feedback.
Please contact Nicole Batsch at [email protected] if you
have comments or suggestions about this new section of our
website.
Resources Listing
Page 2
New Class: Just Diagnosed? Page 2
Support for Children of
Young Onset
Page 3
Early Stage Advisory Group
Page 3
Other items included in the bill are family caregiver education and training, workforce training
(which includes dementia training for nurses aides in home care and long term care), and quality
indicators in medical practices for treating and caring for someone with a particular disease. For Be the Voice of Change
Page 3
more information, please visit: www.alz.org/news_and_events.
Sincerely,
Nicole Batsch
Director, Early Stage & Support Services
(847) 779-6964
[email protected]
NOTICE
If you would like to be removed from the mailing list for this newsletter, please contact Nicole Batsch at 847.779-6964 or
[email protected].
In This Issue...
In addition, our country made a huge commitment to changing health care in the past few weeks. You
might wonder, “How does health care reform legislation help individuals with Alzheimer’s?” Below
A Message from Nicole
is an excerpt from our Public Policy office. While the Alzheimer’s Association did not endorse any
Page 1
specific health care reform bill, the Association did work to ensure that all bills under consideration contained the strongest provisions as possible to help people with Alzheimer’s disease, their families,
and their caregivers.
24/7 Helpline:
1.800.272.3900
Toolbox: New Early Stage
Section of Website
Page 4
Care Navigation is here to help you develop an
action plan and help with problem solving.
Visit us online:
www.alz.org/illinois
Resources by City
Resources listed include Alzheimer’s Association programs and programs sponsored by other organizations.
Alzheimer’s Association Services
24/7 Helpline (1.800.272.3900)
Care Navigation
Medic Alert/Safe Return
Comfort Zone
Early Stage Programs
Barrington
Agency: CJE Senior Life
Program: Culture Bus Social Program
Contact: Judy Holstein at 847.492.1400
Agency: Barrington Area Council on Aging
Program: Early Stage Support Group
Contact: Bonnie Scherkenbach at 847.852.3890
Bellwood
Agency: West Suburban Senior Services
Program: Early Stage Support Group
Contact: Michelle Bonadies at 708-547-5600, ex.
401
Agency: Northwestern University Cognitive
Neurology Alzheimer’s Disease Center
Program: Early Stage Support Group, Buddy
Program, Frontotemporal Dementia/Primary
Progressive Aphasia Caregiver Support Group
Contact: Mary O’Hara at 312.503.0604
Agency: Rush Alzheimer’s Disease Center
Program: Sin Aviso Monthly Group for Young/Early
Onset in Spanish (el programa es completamente en
Español)
Contact: Nieves Lopez at 312-563-4340 or Perla
Castro at 847-749-2228
Agency: University of Chicago
Program: Early Stage Support Groups
Contact: Contact Jeff Solotoroff at 773.702.9037 or
Pat MacClarence at 773.702.4269
DeKalb
Bloomington
Agency: PATH
Program: Early Stage Support Group
Contact: Kathryn Johnson at 309.827.4005
Agency: Alzheimer’s Association
Program: Early Stage Support Group
Contact: Elena Godfrey at 815.484.1301
Elk Grove Village
Champaign
Agency: Center for Healthy Aging of First United
Methodist Church
Program: Minds in Motion, Lunch & Learn, Taiji
Exercise Program
Contact: Sandy Burgener at 217.356.9078
Chicago
Agency: CJE Senior Life
Program: Culture Bus Social Program
Contact: Judy Holstein: 847.492.1400
Agency: Alzheimer’s Association
Greater Illinois Chapter
Program: Early Stage Support Group
Contact: Danielle Dodson 847.933.2413
Agency: Christus Victor Lutheran Church
Program: Early Stage Support Group
Contact: Sara Sondergaard at 630.217.9156
Hickory Hills
Agency: Plows Council on Aging
Program: Early Stage Support Group
Contact: June Bachan at 708.361.0219
LaGrange
Agency: Aging Care Connections
Program: Early Stage Support Group; Early Stage
Fitness Class
Contact: Ruth Folkening at 708.354.1323
Northfield
Agency: North Shore Senior Center
Programs: Mind Matters; Early Stage Memory Loss
Supper Club; Making Sense of Memory Loss
Contact: Barbara Brandt or Mary Lu Osterberg at
847.242.6250
Rockford
Agency: Alzheimer’s Association
Program: Early Stage Support Group
Contact: Elena Godfrey at 815.484.1301
Springfield
Agency: Southern Illinois University Alzheimer’s
Disease Center
Program: Early Stage Support Group
Contact: Greg Kyrouac at 217.545.7199 or Ann
Popovich at 217.545.7189
Elmhurst
Agency: Rush Alzheimer’s Disease Center
Program: Without Warning Support Group for
Young/Early Onset
Contact: Susan Frick at 312.942.5359
Just Diagnosed?
Did you recently receive a diagnosis of a
memory loss condition and don’t understand it?
Are you worried about how the diagnosis will affect your daily life?
The Alzheimer’s Association-Greater Illinois Chapter offers a new
class for individuals recently diagnosed with memory loss and
their family members. This 2-hour class will help you fill in the
gaps about your diagnosis, learn about medical and nonmedical
treatments and obtain resources available to support you and your
family.
Chicago Office – 8430 W. Bryn Mawr Avenue, Suite 800
Wednesday, May 19, 2010 from 2-4pm
Wednesday, August 18, 2010 from 2-4pm
Wednesday, November 17, 2010 from 2-4pm
Call 847.779.6964 for more information.
Rockford Office - 1111 S Alpine Road
Monday, May 4, 2010 from 2:30-4:30pm
Call 815.484.1301 for more information.
Support for Children of Young Onset
By Rev. Shawna Bowman M.Div and Susan Frick, MSW
Picture a support group where caregivers living with a person
who has Alzheimer’s disease meet to share their stories and
insights. Can you see the group? You probably didn’t picture this
group serving only children, first grade through high school. While
surprising, there is such a caregiver group in the Chicago-area.
This children’s group is part of the Without Warning™ program.
Coordinated by the Rush Alzheimer’s Disease Center, Without
Warning provides support and education for individuals and
family members who journey with young onset Alzheimer’s
disease (YOAD). It is estimated that up to 10% of those
diagnosed with Alzheimer’s disease are young onset, under the
age of 65 when diagnosed.
At any age, living with Alzheimer’s disease is difficult but when
the individual is in midlife, unique challenges develop. Some of
these challenges include: getting a diagnosis, loss of purpose and
identity, changes in employment, financial matters, relationships
and finally the impact on their children. Some individuals with
YOAD are parents of children who still live at home. These
children, at a young age, become caregivers.
For four years, Without Warning has
offered an annual children’s event.
Recently, the group requested, we
meet every other month. At previous
meetings we have discussed
Alzheimer’s disease, communication,
and stress and role-played situations.
The children enjoy getting together
because they are among peers who
understand. With amazing insight,
they discuss their feelings of living with a parent with YOAD.
Currently we use journaling, drawing and various projects to
express these feelings. In one group meeting, the children talked
about their dual roles; children and caregivers. They express living
a double life. One life, a perfectly timed and executed staged
reality for the benefit of the parent with YOAD and the other a
chaotic, behind the scenes production to support their parent.
Such stories inspired this drawing. As group leaders, we are
amazed at the children’s maturity, sensitivity, and ability to see
their role in supporting their parent and the whole family.
For information on the Without Warning program or this children’s
group, call Susan Frick, MSW at 312-942-5359.
Early Stage Advisory Committee
Be The Voice of Change
In February, the Alzheimer’s Association-Greater Illinois Chapter
launched an Early Stage Advisory Committee. The committee
is made up of 12 members including a person with young onset
memory loss, a person with older onset memory loss, and a
family member. In addition, multiple professionals responsible
for a unique aspect of serving people with memory loss are also
on the committee. Professionals represent elder law, financial
planning,
pharmacy,
social research,
physical fitness,
social work,
physician’s
office,
diagnostic
center and a
museum.
We are pleased to introduce:
From left to right, back row: Elena Godfrey, Anne Vargo, Greg
Kyrouac, Bob Warfield, Gregory Bork, Jr., Ruth Folkening, Kerry
Peck, and Lucas Livingston. Front row: Erin Hanrahan, Caryn
Etkin, and Angela Riley. (Not pictured: Cindy Kolick).
On Tuesday, April 13, 2010 the Greater Illinois Chapter hosted
the inaugural A Reason To Hope Luncheon at the Chicago
Metropolitan Club in the Willis Tower. During the luncheon Early
Stage Advisory Committee Member Cindy Kolick was featured in
a video about her experiences with Alzheimer’s disease. Cindy
also gave a live testimonial about the importance of Alzheimer’s
resources for those with the disease.
Photo Above: Cindy Kolick gives an interview at the A Reason to Hope
Luncheon.