Distress Guide

Distress Guide

Level 1 Mild Distress:

Respondent actions:

• Change in voice tone or volume

• Change in focus

• Hesitancy to answer questions or probes

• Fidgeting

• Use of inappropriate language

• Non-relevant answers

Interviewer actions:

• Pause give respondent time to recover/compose themselves

• Check if respondent wants to continue if they have not already indicated that they would like to stop – terminate interview if necessary

• Change topic/move to next question/topic

• Inform PI

• Offer appropriate helpline numbers at the end of the interview

Level 2: Moderate distress

Respondent actions:

Level one signs plus…

• Long pauses and sighing

• Tearful / crying

• Extreme forms of agitation

• Non-responsiveness

• Nonsensical responses to questions or probes

• Asks for your advice/help

• Says, does not want to continue with interview

Interviewer actions:

• Stop interview and offer helpline numbers

• Inform PI and Operations team lead

• Complete respondent distress report form

• Operations team lead to submit incident report to ERB

Level 3: Severe distress

Respondent actions:

• Mentions suicidal thoughts

• Talks about wishing another person was dead or talks about committing harm to another person

• Respondent asks for immediate help from a health care professional

Interviewer actions:

• Stop interview and offer helpline numbers

• Inform PI and Operations team lead

• Complete respondent distress report form

• Operations team lead to submit incident report to ERB

Helpline telephone numbers and web resources

For help with emotional distress¹:

National Suicide Prevention lifeline #988

Additional resources can be found on the CDC Website: https://www.cdc.gov/violenceprevention/

Resources for Cognitive Health and Older Adults

Cognitive Health and Older Adults | National Institute on Aging (nih.gov)

More Information about Cognitive Health, Dementia and Alzheimer’s:

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center (www.nia.nih.gov/alzheimers) Phone Number: 800-438-4380

Email: Adear@nia.nih.gov

Alzheimer's Association
800-272-3900 
866-403-3073 (TTY)
info@alz.org
www.alz.org 

Alzheimer’s Foundation of America
866-232-8484
info@alzfdn.org
www.alzfdn.org

The CCQDER operations study team lead Kristen Gregory-Lee/Amanda Titus and the study PI will be informed of distress displayed during the interview.

The operations team lead will be responsible for reporting any signs of moderate or severe distress to the ERB.

Respondent Distress Report form

CASE ID number___________

Interviewer name_______________________________________________________________

Name of PI____________________________________________________________________

Level of distress (moderate/severe)_________________________________________________

Distress Description

______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Interviewer Actions

____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Date reported to PI and Operations team lead_________________________________________

Severe distress

Date reported to ERB____________________________________________________________

Name of operations team lead making report____

1 Links and phone numbers updated on: 06/24/2024