Toolkit: Questions to Consider

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.

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Your Stories

David.B

David B

I was diagnosed with young-onset Parkinson's disease in 1997, when I ...

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