Support Group Leader's Toolkit

Questions to Consider

What will your group consider as "young onset?"

• Chronological age? If so, what age range (under 40, under 50, under 60)?
• "Young" age of onset (regardless of current age)?
• People who are working? If so, what will happen if/when they stop working? Will they need to find another group?
• Will "young onset" be synonymous with or contingent upon stage of illness/degree of progression?

What is the purpose of the group?

• Educational
• Supportive
• A combination of both?

When will you meet?

• Weekly, monthly? Daytime, evening?
• Who will attend? Patients only? Patients and caregivers? (Some people rely on a caregiver for transportation).
• Do you want to involve families? If there are young children, will you offer babysitting?

How will you structure the group?

• Will you have a "keynote" speaker each time?
• Will you designate specific topics/themes each time (i.e. Deep Brain Stimulation, work, relationships)?
• Do you want to make it an open forum (traditional members sharing)?
• Do you want there to be breakout groups (patients/caregivers)?

Where will you meet?

• Church/synagogue?
• Community Center   YMCA?
• Library? Hospital?

Try to find a facility that will "host" you by donating the space.

Will your group have a social component?

• Meetings/parties at restaurants or other locations?  If so, will this be regularly or occasionally?
• Will you have a summer picnic? Holiday party?

Who will facilitate the meetings?

• Professional or lay leader?
• Counseling student intern?
• Will you have a co-leader (highly recommended)?

What group policies do you need to create?

• Confidentiality?
• How/when will group members be contacted? Phone, email, yahoo group?

How will you recruit?

• Through your APDA Information & Referral Center and/or Chapter?
• Notices/advertisements in PD newsletters?
• Via local paper "to-do" sections or by getting an article written as a human interest story (see Natalie's story). 

For additional information about starting a young onset support group in your area, contact the APDA National Young Onset Center at 877.223.3801 or email us at apda@youngparkinsons.org.