Without Warning™: Supporting Those Who Journey with Younger

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Without Warning™: Supporting Those Who Journey with Younger
Without Warning™: Supporting Those Who Journey with Younger‐Onset Alzheimer’s Disease
Susan Frick, MSW
312‐942‐5359
[email protected]
©2003 RUSH University Medical Center
The Start of Without Warning™
Our Mission Inspired by someone affected by younger‐onset Alzheimer’s disease, Without Warning™ supports and empowers individuals and their families who face Alzheimer’s disease early in life. Without Warning’s specifically tailored programs offer opportunities for education and support. By realizing that “we are not alone”, we hope individuals and their family members will find purpose, dignity and the opportunity to live each day with meaning and grace. ©2003 RUSH University Medical Center
The Without Warning™ Program
• Monthly meeting for individuals with younger‐
onset, family members, and friends
• Quarterly meeting for adult children (college age and older)
• Every other month meetings for young children (1st grade through high school)
• Additional programming
– Public awareness
– Social activities
– Service projects
©2003 RUSH University Medical Center
Without Warning™:
Our Thursday Meetings
Structure of Meeting
10:00‐10:30 Social Time
Time for visiting and announcements
10:30‐11:45 Small group meetings
(2 groups for Individuals with AD and 3 groups for Family Members)
11:45‐12:00 Wrap up Time for visiting with group members and staff
©2003 RUSH University Medical Center
Without Warning™:
What we have learned about younger‐onset over our eight year history
There seems to be some common experiences which make younger‐onset different.
©2003 RUSH University Medical Center
What we see in the individuals
• Feel different from others
• Stress from lack of purpose
• Social environment is critical (balance between support and smothering)
• Must learn to adjust to moments of confusion
• Some express sense of contentment not always seen in the family members
• Find benefits of staying active
©2003 RUSH University Medical Center
What we see in the families
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Stress level can be high
More burden then we see in the individuals
Must assume multiple roles Guilt around emotions and responses to individual
Feel isolated from their peers
Difficulty asking for help
Relationship to spouse or parent has changed
Health issues can be high
©2003 RUSH University Medical Center
What do we see in the young children
• Maturity beyond their years
• Sense of feeling different then their peers
• Must assume new roles within the household
• Not always wanting to have friends over to house
• Increased risk for depression, acting out, anger and grief
©2003 RUSH University Medical Center
The Importance on Community
“We’re all in the boat together.” (person with AD)
©2003 RUSH University Medical Center

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