Recruiting participants is the crucial first step in the survey process. To support you in this step, we’ve compiled helpful tips and advice on this page for recruiting participants, as well as for the subsequent steps (scheduling appointments, conducting surveys). The information is based on the experiences of our project assistants and research partners, who gathered it themselves while reaching out to participants and conducting surveys. We also invite you to visit our regularly held digiDEM Dialog. There, you can share your own experiences and challenges or benefit from the experiences of other research partners.
When the term “people with dementia” is used in the following, it always includes people with mild cognitive impairment.
General Guidance
For the initial interview, reach out to people who already trust you—for example, people you have been supporting or advising for some time.
For people with dementia, their daily condition can vary greatly. This can be a challenge, especially during the initial contact. After making contact several times and getting to know each other better, it becomes easier to assess their daily condition and cope with a potentially difficult day.
It is important to first build trust so that you can then introduce the project and the survey. In doing so, it is important to be flexible and adapt to the person with dementia. You must be patient with any skepticism the person with dementia may express, which can be reduced by providing explanations or highlighting the purpose of the project.
If a person with dementia shows significant resistance to the interview when approached, it is advisable to try again on another day. If this behavior becomes frequent or if there is significant mistrust, recruitment for the interview may need to be discontinued altogether. Participation in the study is voluntary at all times.
Organization
When dealing with challenges related to a person with dementia, it can also be helpful to consult with the caregiver and family members, if any, since they are usually the most important support figures for the person with dementia. Through the caregiver and family members, it is easier to encourage the person with dementia to participate in the study.
To help people with dementia and their caregivers and loved ones, conducting research on this topic can help identify counseling centers or services in the region, thereby also serving as a source of guidance.
To recruit participants, it can be very helpful to tap into a regional network (e.g., county administrative offices, “Gesundheitsregionen plus,” other healthcare providers, etc.). We would like to offer the following tips to help you establish or utilize this network:
Research low-threshold services for those affected, then identify a personal contact person and inquire whether access to the target group is available, and, if necessary, discuss next steps, e.g.,
- Have the networker introduce you to people with dementia and their caregivers and family members to build trust
- Contact network partners to ask if they would be willing to distribute informational letters about the project—along with a flyer—to their clients and, if interested in participating in the research, to contact Ms. or Mr. XY
- Have the network partner pass on your phone number to the affected individuals so that they can contact you directly.
Distribute flyers or hang posters at general practitioners', neurologists', psychiatrists', and psychologists' offices.
Hand out flyers at conferences or events on the topic of dementia and strike up conversations.
During the surveys, there may be instances where an internet connection is not available for data entry in REDCap. The following tips may help resolve this issue:
- Set Up a Hotspot Using Your Cell Phone
- Using an Internet Stick / Surf Stick
- An invitation to visit the respective facility.
Adressing the Participants
It is important to help people with dementia find meaning and benefit in their lives. In doing so, it can be helpful to appeal to their sense of community while also highlighting the individual benefits.
The following arguments can help you convince people with dementia and their caregivers and family members:
- Highlighting the relevance of the topic: 1.8 million people in Germany are affected by dementia. By 2050, this number is expected to rise to 2.8 million. This shows that people with dementia are not alone in facing their challenges
- Participating in the project helps other people with dementia who are in the same situation
- The information gathered can be used to improve services for people with dementia and the overall care situation
- A person with dementia can understand their own situation and describe their personal circumstances
- People with dementia are given the opportunity to have their memory function assessed on a regular basis and to take appropriate measures
- People with dementia and their families gain access to digiDEM Bayern’s digital services to help them in their daily lives
- Schaffen Sie Vertrauen in das Projekt, indem Sie mitteilen, dass:
- das Projekt durch das Bayerische Staatsminsterium für Gesundheit und Pflege (StMGP) und damit von öffentlicher Seite gefördert wird
- die Daten auf einem Server des Universitätsklinikums gespeichert werden, der höchsten Sicherheistsstandards unterliegt
- der Kontakt mit den Menschen mit Demenz und deren An- und Zugehörigen immer durch Sie als Forschungspartner erfolgt.
Even though the situation can be uncomfortable for both sides, remain honest. Take the time to build a connection, treat the person with dementia as an equal, and face uncomfortable truths together. The person affected has memory impairments and/or is already living with dementia; unfortunately, no one can change that. Addressing the issue is the first step and is essential to providing support to the person with dementia and their caregivers and loved ones. Let the person know that they have nothing to fear and that you are there for them.
Furthermore, it is not advisable to present the project as something other than what it is, or to fail to mention it at all or to misrepresent it.
Think ahead about the situation the people you’re interviewing are currently in, adapt to their frame of reference, be empathetic, and show understanding. You need to find a way to express yourself appropriately and sensitively (e.g., abstractly, clearly, or simply). In addition, you should approach people based on the stage of their dementia or their level of understanding of the disease’s progression.
Situations in which a person with dementia appears overwhelmed should be avoided. A person with dementia should be given time to adjust to the situation. Therefore, it is best to broach the topic of participating in the study with them during different meetings.
To broach the topic of digitalization, it’s a good idea to talk about changes—for example, how there used to be only text messages, but now there’s WhatsApp.
Participants may also qualify for study enrollment based on their test results during a screening day. It may be advisable to discuss potential study participation before the screening tests (MMST and MoCA) are administered. However, it can also be helpful afterward to follow up with participants who have given their consent to discuss their consent again. In doing so, it is especially important to note that someone will contact them by phone shortly to schedule an interview.
When communicating the screening results, it may be advisable to phrase them in a more “casual” manner. The tests provide only an initial assessment and do not constitute a diagnosis. It can be helpful to note that the result is a snapshot in time and that there may be other causes for an abnormal result. It is also important to take the person’s individual situation into account when communicating the results (social environment, does the person live alone?, other medical conditions, etc.).
In the case of a borderline result (MoCA = 23), it can be pointed out that these assessments also provide an opportunity to track changes in memory function, since the patient will return for a follow-up test in 6 months.
Preparing for the survey
After the training and before the surveys, it is recommended that you review the materials and try out the REDCap test system. For example, the training manual contains many helpful tips regarding the surveys. Click here to access the page with the materials.
Before starting the survey, it may be helpful to conduct a trial run with people in your immediate circle (family, coworkers, etc.).
Providing a detailed overview of the project before the initial interview can help raise participants’ awareness of the follow-up interviews. In particular, it is important to mention the upcoming follow-up interviews during the initial interview.
To organize follow-up interviews, it may be helpful to conduct them all at once on one or more days. In particular, for follow-up interviews with individuals who were recruited for the project during a screening day, one option might be to invite all of these individuals to a “second screening day” and conduct the interviews all at once.
Much of the follow-up survey can also be conducted by phone. Experience has shown that when surveys are conducted by phone, respondents are more likely to answer “uncomfortable” questions (such as those about income).
Conducting the survey
It is important to help participants overcome their fear of being interviewed.
To help alleviate participants’ anxieties, it is recommended not to refer to the survey as a (performance) test or something similar, but rather to view it as an exchange or conversation. This creates a trusting atmosphere for the conversation.
The more surveys you conduct, the more comfortable you’ll become with the process. Don’t be afraid to make mistakes at first—just give the surveys a try. The more comfortable you become, the less time the surveys will take.
