Recruitment challenges and strategies: Lessons learned from an early-stage dyadic intervention (innovative practice)

Barrier: Recruitment site population not appropriate for study

One fruitful strategy for enrolling appropriate dyads was for aging network organizations and physician offices to send out organization-wide emails describing the study and the target population and encouraging staff to refer clients and family/friends who might be appropriate. Project staff also met with agency staff every six months to identify appropriate clients. These efforts were successful because referral staff and organizations had good relationships with appropriate participants. Of the 27 dyads referred, nine enrolled in this study.

A less successful strategy was for project staff to conduct presentations at local senior centers, libraries, and other community events, promoting SHARE. Five dyads were enrolled as a result of eight community presentations. The homepage of the Benjamin Rose Institute on Aging (BRIA) website featured a SHARE spotlight and resulted in the enrollment of a few dyads. Efforts to attend community senior and health fairs, and eight memory screenings at local senior centers resulted in no enrolled participants. We found that persons who participated in the memory screenings were only concerned about their memory versus actually experiencing memory loss (i.e., scored 30 on the MMSE). These presentations had a positive impact on community relations but were time intensive with few appropriate referrals.

Barrier: Gatekeeper obstacles at referring organizations

There can also be competition among researchers who are recruiting participants with similar characteristics (Shatenstein et al., 2008). For example, although a successful site in the past, a local geriatric assessment center did not provide referrals because they were simultaneously recruiting a similar sample for a drug trial. To avoid this problem, we recommend asking potential referral sites direct questions about competing recruitment activities.

Another effective strategy was for referral partner staff to send letters describing the project to eligible persons with dementia who met inclusion criteria inviting them to participate. BRIA project staff called potential dyads, to provide a brief description of the project, and determine their willingness to participate. In addition, BRIA project staff sent out over 200 letters and 300 newsletters to past research participants and professional contacts. Of these 500 mailings, more than 30 calls were received, and five dyads were enrolled.

A surprising yet successful recruitment strategy was the airing of local radio advertisements. A radio advertisement aired across two radio stations (i.e., a classical format and an adult contemporary format) from October 2009 through March 2011. Using more inclusive language may have helped cast a wider net which contributed to the larger than expected number of calls received. While many potential dyads who called were not eligible for SHARE (e.g., no memory loss, no caregiver, thought the ad was a job announcement), we enrolled more dyads than have ever been enrolled as a result of a radio advertisement. In addition, we recruited and enrolled appropriate families in SHARE who were not formally diagnosed with memory loss and had not received many services. Thus, radio advertisements helped engage appropriate families who otherwise would not have had knowledge of or access to a program of this nature. Project staff received over 90 calls from potential dyads who had heard about SHARE on the radio, 12 of these 90 callers were enrolled.

Barrier: Rigid inclusion criteria that eliminated appropriate participants

SHARE telephone screening protocols required revision once we were in the field. The WAIS-III Digit Span Subtest—Digits Backward (Wechsler, 1997) was eliminated from the screening protocol because staff determined that success on this task did not predict a person with dementia’s capacity to participate in the intervention. Some potential persons with dementia who failed the Digits Backward were found to be appropriate for the project, while other persons with dementia who passed it were found to be too impaired.

Another strategy to ensure the person with dementia was appropriate for SHARE, was to ask the caregiver a series of questions which assessed the person with dementia’s functional status. If a person with dementia was reported to be performing instrumental activities of daily living (IADLs) and personal activities of daily living (PADLs) entirely or mostly on their own, they were most likely appropriate. However, those who struggled with or needed more assistance with IADLs and PADLs seemed to score more poorly on the MMSE during the baseline interview.

We adjusted our inclusion criteria to recruit persons with MMSE scores between 15 and 27 (originally 23 to 27), or persons with MMSE scores 27 and higher if they had a confirmed diagnosis of a cognitive condition. This change was warranted based on our previous experience recruiting dyads indicating that many persons with these lower scores were able to participate in the intervention and interviews. Specifically, of the 11 enrolled persons with dementia with MMSE scores ranging from 15 to 21, two dropped out of the project for reasons unrelated to cognitive loss (e.g., family stress).

Phone screening protocols

Conducting telephone screenings is both cost effective and eliminates the transportation barrier for potential participants (Anderson, Fogler, & Dedrick, 1995; Dibartolo & McCrone, 2003; Hicks Patrick, Pruchno, & Rose, 1998). However, potential participants can be difficult to reach by phone, thus it is important to have a system in place for the number of attempts to contact, and the frequency of calls that will be made to reach a dyad (e.g., leave three voicemails, call once per week). Second, it is usually best to have the first contact be with the caregiver. One advantage of screening both the caregiver and person with dementia is that similar questions can be asked so that staff gain the perspectives of both persons. We have found that often times caregivers either overestimate or underestimate their person with dementia’s abilities, persons with dementia can downplay their memory symptoms, and the caregiver and/or person with dementia may be in denial.

Staff well trained to work with older adults and persons with cognitive loss

Screening staff must be knowledgeable about the research study and also well trained to work with older adults and persons with dementia (Dibartolo & McCrone, 2003). They need to be able to recognize “red flags” reflecting that a dyad may not be appropriate for the study. It is important to assess if the person with dementia is aware of his/her memory loss and acknowledges their symptoms and diagnosis. If a person with dementia does not acknowledge having a diagnosis it may be that he/she is in denial, or too impaired to recognize their own decline. Persons with dementia who are in denial tend to be a drop-out risk because they may not view the program as a good fit or beneficial. Other key questions could include: is the person with dementia able to converse and answer questions, does the caregiver often answers questions for the person with dementia, does the person with dementia initiate topics of conversation, is he/she receiving any services in the community, and does the person with dementia see a mental health specialist for any services? If a person with dementia has a diminished ability to carry on a conversation, this can be an indication that they may not be able to participate. From our experience, persons with dementia who are able to answer the screening questions typically are appropriate for the study. This is not to say that they need to answer every question with complete accuracy, such as the year they were diagnosed, more so that they are able to give examples of their symptoms and what assistance their caregiver provides. If a person with dementia is receiving services in the community, particularly related to personal care, they often are too impaired for an early-stage program.