CADRE Collaborative Alzheimer Disease Research Exchange

1. CADRECollaborative Alzheimer Disease Research Exchange Mary Guerriero Austrom, PhD Jennifer Bachman, MEd

2. CADRE* From Merriam-Webster: 1FRAME, FRAMEWORK 2 a nucleus or core group especially of trained personnel able to assume control and to train others; broadly: a group of people having some unifying relationship <a cadre of lawyers> [a cadre of clinician/researchers] 3 a cell of indoctrinated leaders active in promoting the interests of a revolutionary party * Thank you Bridget

3. IDND Members • Mary Austrom • Jennifer Bachman • Martin Farlow • Paula Trzpecz • Bridget Fultz • Malaz Boustani • Stephanie Munger

4. Key Issues • Recruitment to dementia research projects is challenging and costly • Researchers have limited reach to potential participants for various reasons • Access • Time • Funding • Expertise • Relationships

5. Alzheimer’s Association • Provide services statewide • Have access to family members and persons with dementia [pwd] via their network of services • Have or develop a relationship with the families and pwd via their services

6. CADRE • Developed through the ideas generated at the last IDND meeting • Pilot project proposal is in progress to submit the Roybal Center at IU CAR by the end of week

7. Specific Aims • Develop a collaborative system to identify, inform and recruit potential participants to AD research projects through the Alzheimer’s Association Helpline. a. Determine criteria that leads to successful recruitment and follow-up versus an unsuccessful attempt b. Identify the best mechanism to share or link willing research participants with researchers.

8. Specific Aims 2. Assess the feasibility and acceptability of recruitment through the AA Helpline using well-trained S/Vas recruiters. a. Evaluate the effectiveness of the training program for Helpline S/V b. Evaluate the effectiveness of the culture change process with the S/V

9. Preliminary DataEffects of AA Core Services on Family Caregiver Well-being: A Collaborative Study • Current pilot study the IADC Education Core has undertaken with AAGI and the U of I CAC: • Can recruit using Helpline Staff/Volunteers • N=55 completed baseline interviews • Currently half-way through6-month follow-up phase • N=21completed follow-up interviews

10. Lessons Learned • S/V became comfortable asking if caller was interested in research • First time callers to Helpline are not put off by the question about research participation • A key feature of the Helpline is the rapport and relationship that quickly develops between the caregiver and S/V answering the call

11. Lessons Learned • The longer the Helpline service, the more receptive the caller seemed to be willing to participate. • Staff that spent the most time answering the helpline had the highest number of recruits and the highest percentage of completed baseline interviews. • Staff felt a stronger commitment to being successful because they felt recruiting participants to the pilot study was job related. • Increased training/modeling of recruitment questions by phone and consistent internal quality control is necessary.

12. Challenges • Both S/V reported some callers may have felt obligated to say “Yes” although it was critical to AAGI that this not happen. • Decision making process in considering research participation needs to be further examined. • 7 different people answered the Helpline and used differing judgments about asking the question despite the availability of a carefully worded script and protocol.

13. Challenges • Multiple IRBs presented challenges and created delays in contacting participants [need to shorten this time interval] • 5 calls to participants may be the upper limit in attempts to contact

14. Proposal will include: • Training--increased and on-going • Culture shift at the AAGI • Staff/volunteers like to provide services • 6-month trial will likely be acceptable but on-going research recruitment will involve a shift in culture • Nationally this may be a direction the group is headed • Puts our chapter and collaborators [IADC] ahead of the curve

15. Call received by the AA helpline Service provided by staff or volunteer Is caller a pwd or family caregiver? NO: usual service Figure 1: CADRE Study Design Yes: Ask if caller interested in research opportunities? YES: Read script about research gateways (IDND web site, information packet by mail) NO: Ask why Analyze responses for trends or patterns Add information packet to regular AA mailer At 2 weeks follow-up call to ask: Did you receive information in mail? Did you visit the web site? Are you interested in a particular study? May we give your contact information to a particular study? YES: Give study coordinator caller’s contact information NO: Ask why Analyze responses for trends or patterns Follow up with study coordinator to track success. Track variables associated with successful vs. unsuccessful recruitment (1-3 months)

16. Call received by the AA Helpline Helpline service provided by staff or volunteer Is the caller a person with AD/dementia or a family caregiver? Figure 1: CADRE Study Design NO: usual service Yes: Ask if caller interested in research opportunities? NO: Ask why? Read script about research gateways (IDND web site, information packet by mail) Record all responses. Analyze for trends or patterns Add information packet to regular AA mailer

17. At 2 weeks follow-up call as per regular service. Plus ask: Did you receive information in mail? Did you visit the web site? Are you interested in a particular study? May we give your contact information to a particular study? Figure 1: CADRE Study Design YES: Give study coordinator caller’s contact information NO: Ask why Analyze responses for trends or patterns Follow up with study coordinator to track success. Track variables associated with successful vs. unsuccessful recruitment (1-3 months)

18. Time Line • Months 1-2 IRB approval • Begin training and culture shift at AAGI [this is ongoing] • Months 3-9 month recruitment • Months 10-12 • Data analysis • Write larger proposal

19. Comments and suggestions