“From Victimhood to Warriors”: Super-researchers’ Insights Into Alzheimer’s Disease Clinical Trial Participation Motivations

Abstract

Background and Objectives

Recruitment and retention of research participant serve as a significant challenge in the search for ways to slow or prevent Alzheimer’s disease. While barriers to participation are well documented, less is known about motivations for Alzheimer’s disease clinical research participation. The purpose of this study was to explore what motivates individuals—who ultimately develop an ongoing connection to research and frequently participate—to engage and stay involved in Alzheimer’s disease research.

Research Design and Methods

Individuals who had participated in multiple Alzheimer’s disease-related clinical trials, or their study partners, were interviewed about their decisions to engage and remain in research.

Findings

Interviews were completed with 33 individuals, 28 research participants, and 5 study partners. All interviews were audio-recorded and transcribed verbatim for analysis. Respondents indicated learning about research opportunities through the media, community events, doctors, and other research participants. While many were initially motivated by a family history or knowing someone with Alzheimer’s disease, others had no personal exposure. Individuals in prevention studies were generally proactive and viewed research as a constructive way to address memory concerns. While several individuals acknowledged personal benefits of research participation, most indicated an understanding of the importance of research and being motivated to help others in the future, frequently referencing a sense of social responsibility or moral obligation to help. Positive relationships with personnel at the site encouraged continued involvement.

Discussion and Implications

These findings suggest that efforts to identify research participants should highlight the value of research and help illuminate how participation may contribute to well-being of future generations.

The prevalence of Alzheimer’s disease (AD) is currently 5.7 million Americans and is anticipated to reach 14 million by 2050 (Alzheimer’s Association, 2018). Currently, there are symptomatic treatments, but no disease modifying drugs (Kumar, Singh, & Ekavali, 2015). Scientists are exploring various disease targets, but the rate of scientific discovery is slowed by recruitment challenges (Beattie et al., 2018).

In 2018, the National Institute on Aging developed a report outlining a national strategy to guide recruitment for AD and related dementia clinical research (National Institute on Aging, 2018). This report describes the recruitment need as a, “pressing need for increased and diverse participation in research studies.” (p. 1) and acknowledges that “scientific research on clinical trial recruitment effectiveness is limited” (p. 25). Wong, Amano, Lin, Zhou, and Morrow-Howell (2019) recently conducted a synthesis of recruitment and retention strategies for minority engagement in AD research and found that less than half of the identified studies evaluated recruitment strategy effectiveness through a pre- and postanalysis and that none of the studies identified use a randomized controlled trial design. Wong and colleagues characterized all of the studies reviewed as methodologically weak (Wong et al., 2019). Neither the review nor the national strategy included any mention of theories or models to guide recruitment and retention strategies.

Various models and theories exist to predict engagement in a variety of health protective behaviors (Davis, Campbell, Hildon, Hobbs, & Michie, 2015), but there is a need for theory designed specifically to predict research engagement. The decision to engage in AD clinical trials can be better understood through the development of an evidence-based theoretical model that highlights key factors that promote participation, thereby providing a framework for understanding AD recruitment.

Previously identified barriers to clinical research participation include research mistrust, insufficient information, protective caregiver behaviors, and logistical factors such as the requirement of a study partner and the extensive time commitment required (Bull, Boaz, & Sjostedt, 2014; Grill, Zhou, Elashoff, & Karlawish, 2016; Williams et al., 2010). Facilitation of research encompasses more than just the absence or amelioration of barriers. Facilitators include altruism, the hope for personal benefit, and positive relationships between the researchers and the community (Grill, Karlawish, Elashoff, & Vickrey, 2013; Williams et al., 2010). However, these facilitators are often identified based on discussions of hypothetical research participation; since intention does not always translate into behavior, insights into research motivators should come from individuals participating in real-world research. Given the longitudinal nature of most AD prevention and treatment studies, understanding factors that relate to continued engagement is also important. Findings regarding research engagement from other disease contexts or non-interventional research studies may not apply in the AD clinical trial context. Accordingly, the purpose of this study was to better understand what factors motivate individuals to become engaged and stay involved in longitudinal AD prevention and treatment clinical trials.

Methods

Participants

Records of research participation from Sanders-Brown Center on Aging were reviewed to identify super-researchers, individuals who had participated in more than one AD prevention or treatment clinical trial. Using a list of all clinical trials research participants at Sanders-Brown Center on Aging, 43 participants were contacted to ascertain their willingness to come into the center for a brief interview about their motivations for participation. In instances where the individual identified was too impaired to participate in an interview independently, the study partner was asked to participate. One individual who had participated in only a single clinical trial was also included as his wife participated and he was also interested. Of the 43 individuals who were contacted, 33 participated. All individuals who were interviewed signed an informed consent document. For the one individual with AD who participated in the interview directly, his wife also signed the consent, as he may have lacked the capacity to independently consent; his signature still represented assent for participation. For the remaining ten, we either left a message with no reply or had scheduling difficulties. No participants actively declined.

Procedures

Interviews were conducted with one of the first three authors. S. H. Bardach is a faculty member in gerontology who works directly in the area of outreach and recruitment for AD clinical trials. A. Gibson is a faculty member in social work who is not affiliated with the center, but had prior experience working with individuals with memory impairments. K. Parsons is a social worker who serves as a family care support specialist in the center, working directly with individuals with memory impairments and their families. While A. Gibson and K. Parsons were familiar with the center’s research, neither were directly involved with recruitment. This mix of backgrounds was selected to ensure that one interviewer did not consistently lead all participants down a preconceived path. After each interview, the interviewer recorded brief notes that reflected the ideas discussed, impressions of the participant, perceptions of the interview, and any observations regarding concepts to explore further or recurring themes. After 15 interviews, the three interviewers met to discuss emerging themes and areas to probe further for subsequent interviews (see Supplementary Appendix A for the interview guide). Interviews continued until the three researchers agreed that no new themes were emerging and saturation had been reached. All interviews were audio-recorded and transcribed verbatim. All procedures were approved by the University of Kentucky Institutional Review Board.

Analysis

Thematic analysis was used to analyze the data using a constant comparative method (Lincoln & Guba, 1985). S. H. Bardach coded all interviews using an inductive line by line approach. During this process, a codebook was developed and continually modified through an iterative, recursive process as new concepts emerged. Following the line-by-line coding, axial codes were developed and clustered into conceptual categories and themes (Creswell, 1998; Streubert-Speziale & Carpenter, 2003). To better illustrate this process, see Figure 1. Taylor and Bogdan (1984) summarize this process, “In the constant comparative method the researcher simultaneously codes and analyses data in order to develop concepts; by continually comparing specific incidents in the data, the researcher refines these concepts, identifies their properties, explores their relationships to one another, and integrates them into a coherent explanatory model” (p. 126).

Figure 1.

Coding illustration.

Text sample:

I heard about it I think on NPR and it just … one of the things that probably scares me the most is Alzheimer’s, I’d rather have cancer actually. Losing my ability to think is losing who I am. So my first interest was finding out if I had a propensity for Alzheimer’s.

Step 1. Line by line coding—In this process, each discrete idea is identified, as indicated by the slashes below:

I heard about it I think on NPR/ and it just … one of the things that probably scares me the most is Alzheimer’s, I’d rather have cancer actually./ Losing my ability to think is losing who I am./ So my first interest was finding out if I had a propensity for Alzheimer’s.

For each of these ideas, codes reflecting these ideas were jotted down. For instance, the first phrase was coded as, “learned about the opportunity –radio.”

Step 2. Codebook generation—Codes were then compiled into lists and grouped conceptually in a codebook. For instance, all instance of how individuals learned about the research opportunities were listed and grouped together, including the radio example from above as well as from community events, doctors, etc.

Step 3. Axial coding and clustering of concepts and themes—As coding continued, it became clear that radio was one example of “media” more broadly, and these codes then got grouped together within a media category. The resulting codes were used to code subsequent interviews and to recode previous interviews. For instance, when recoding the previous interview, the media code would now be applied as well. As coding continued, awareness of opportunity was identified as part of a larger concept of outside mediators that relate to participation. Throughout the process of coding, the conceptual organization was reevaluated against prior and subsequent interviews, concepts were moved around as needed, and the codebook was continually refined.

While listed as three distinct, sequential steps, these steps were iterative and recursive, and led to a constant comparison between interviews, codes, and categories and themes. Codes and the codebook evolved throughout the above process and as they were reviewed by the other interviewers. Multiple clustering approaches were explored to find the final framework that best reflected the participants’ experiences and fit the data.

To enhance reliability, both A. Gibson and K. Parsons critically reviewed the transcripts throughout the coding process to ensure no major concepts were overlooked. They also reviewed resulting codes and discussed alternate interpretations to ensure that the coding did not just reflect S. H. Bardach’s interpretation of the data. This dialogue was ongoing and the research team met several times throughout the process to review and refine codes and findings and obtain final agreement. To enhance credibility, member-checking was done by sharing initial findings with subsequent interviewees to receive feedback (Lincoln & Guba, 1985).

Findings

Participants

A total of 33 interviews were conducted, 18 by S. H. Bardach, 8 by A. Gibson, and 7 by K. Parsons (see Table 1 for demographics).

Table 1.

Research Participant Characteristics

	N = 33
Age (mean, SD)	73.55, 5.14 (range: 63–86)
Sex
Female (n, %)	15 (45.45)
Male (n, %)	18 (54.55)
Race
Black/African American (n, %)	1 (3.03)
White, non-Hispanic (n, %)	31 (93.94)
White, Hispanic (n, %)	1 (3.03)
Cognitively impaired
Yes (n, %)	5 (15.15)
No (n, %)	28 (84.85)
Number of clinical trials (mean, SD)	2.58, 1.00 (range: 1–5, mode: 2)

Notes: Five research participants were deemed too impaired to participate in the interview independently. In four of these cases, a study partner completed the interview without them. In one case, the study partner was interviewed in conjunction with the participant. The demographics above reflect the research participant identified for the interview, not necessarily the individual with whom the interview was conducted.

Themes

The interviews revealed four themes relating to research engagement: activators, motivators, outside mediators, and reenforcers (Figure 2). Activators are the factors that “activate” individuals to begin considering research participation; activators include awareness of the disease and memory problems and concerns. Once activated, individuals develop motivators for research engagement. Motivators include to know early and be proactive, help and provide hope, and help the future and contribute to society. Outside mediators reflect external factors that influence an individual’s likelihood of getting and staying involved. Outside mediators include awareness of the opportunity, logistical factors related to ease of participation (e.g., access and time), and comfort with research and the research enterprise. These factors influence an individuals’ likelihood of getting involved, but in the absence of activators and motivators would not lead to engagement. For instance, even if one is aware of research opportunities, believes it would be easy to participate, and is comfortable with research, they will not participate without something activating and motivating them to do so. Reenforcers are the benefits and positive experiences that promote future and continued engagement; these include monitoring, coping and support, mental stimulation, feelings of value, and positive and enjoyable environment. While these themes are presented distinctly, it is important to acknowledge that there is overlap and interaction due to the nature of human decision making. For instance, having had a parent with AD may lead to more awareness of the disease and also contribute to a desire to be proactive; while presented separately, the two are certainly interconnected and elements of activators may also motivate and vice versa. Multiple interpretations and classification systems were considered during the analytic process; the themes presented reflect the ways in which these factors best matched participants’ experiences of engagement.

Figure 2.

The AMOR (activators, motivators, outside mediators, reenforcers) model of research engagement.

Activators

Awareness of Disease

Often participants acknowledged a family history led to an awareness of the disease and that this awareness motivated them to contribute to research. Participant 28, age 66, explained:

Very plain and simple, my dad had Alzheimer’s. I experienced firsthand the disaster of that disease and what it can do to an individual, a family, everything. I made the commitment that if I could do anything to help, I’d go in full. That’s what I’m doing…. If my dad did not have Alzheimer’s, the idea of coming over here and doing this would be foreign to me. That’s a sad thing to say. I like to help other people too but I lived it first-hand and that made a huge difference.

Similarly, participant 16, age 71, shared how her desire to learn about her own risk stemmed from a familiarity with the disease:

Through the long process of coming to grips and having to deal with my mom, and an aunt also had Alzheimer’s. I’m very conscious that there’s a genetic component to this and I wanted to find out if I had the markers.

Memory Problems and Concerns

For many individuals, the activator for getting involved in research stemmed from personal memory concerns. For some, these reflected current concerns about or problems with their memory or the memory of a loved one. For others, the concern was more distant—the possibility of developing problems. Some participants, such as 72-year-old participant 13, reported noticing memory changes and wanting to identify if they were normal changes or early signs of problems:

I think the first thing was really selfish, I wanted to know if I had any indication of Alzheimer’s or if this was just natural aging-forgetting…. My husband, I guess knowing some of my frailties, was adamantly opposed to it. He told me he didn’t want me to do this. I was concerned enough about my memory at that point to insist.

Motivators

Know Early and Be Proactive

For many individuals, the motivation to get involved stemmed from a desire to know early if they were at heightened risk of developing AD or if they were currently experiencing problems. Participants typically recognized that early recognition provided an opportunity to be proactive. Unfortunately, for some, this desire stemmed from a failure to receive the information or direction they sought through avenues of traditional care. Participant 16 discussed how her mother’s neurologist would not acknowledge memory problems and consequently, “He undermined any attempts to effectively deal with the condition. She felt like her doctor told her she didn’t have it.”

Many participants did not have specific concerns, but still sought reassurance and appreciated the assurance they received. Participant 22, age 66, explained:

I wanted to help. I can’t donate large amounts of money and I don’t have the kind of scientific brain to do the research. But I can be a guinea pig and I want to learn more myself, and I want to find out what to do to help me personally. But when they do those tests and say, we’re not seeing any dementia, it’s a huge relief. It’s a huge burden lifted, which I didn’t even expect. So I’m a fan.

Participants recognized value in identifying problems early. Early identification was viewed as a way for participants to be proactive, both in slowing the disease and in making other life arrangements to be better prepared. Participant 19, age 77, indicated early identification would enable him to make “sure I had everything in order.” Similarly, Participant 5, age 71, indicated, “I want to be proactive … I want to know and take care of it, I don’t want to get into a position and have to react to it.”

Help and Provide Hope

For many with a loved one living with AD, the motivation to get involved was largely to help their loved one. A number of participants indicated that research was their only hope. Participant 1, whose wife had AD indicated, “In my case it was desperation because I knew that my wife was eventually going to die and I needed to do everything I could to help out.” Similarly, Participant 3, whose wife also had AD, explained the decision to get involved with research:

It’s just the only logical path to do anything to help. It’s the only logical path to be proactive about it instead of just sitting home dwindling away…. We decided, honestly we had no other recourse. It would be illogical not to. We had no hope…. The prognosis of Alzheimer’s was the primary catalyst…. The absolute biggest motivator is that it’s going to kill her someday. We didn’t have to go any further than that to dig up reasons to participate, to try to get help and to help.

Participant 33, discussed how at the time of her husband’s diagnosis with AD, “His neurologist said, ‘you’re already on the only two medicines available, the only thing you can do is participate in a clinical trial’. He went home and immediately went looking.” Her husband, who had a lot of self-awareness regarding his disease, elaborated, “If you have the disease, you might as well do something with it,” demonstrating that the search for something that may help can be for a loved one or oneself.

Help the Future and Contribute to Society

Many individuals seeking to help a loved one with memory problems also hoped their research participation would help others in the future, frequently focusing on kids and grandkids. Participant 33 indicated, “Initially, it was something that would help us. But he’s trying to help the future. It’s probably not going to help him but may help our children or other folks.” Others understood that the research may not benefit them or their loved ones personally, but often valued the hope of benefit for kids and grandkids. Participant 14, age 71, explained:

I knew it probably wouldn’t help me but I wanted to help someone else. I am probably at risk to have it, but I don’t expect the care to help me but my kids and grandkids is who I’m doing it for.

The motivation for involvement was often even broader, with the idea of supporting research and contributing to society repeatedly emphasized. Participant 8, age 74, indicated, “I think all of us in one way or another want to make a contribution to society.” Many shared this desire to contribute. Participant 9, age 75, whose mother had AD, explained:

My overall idea of volunteering is that I’ve never been married and had children and I thought, this body should contribute something to humanity and not be an empty space and I really felt like I needed to do this. I’m an old retired pharmacist and educator and it kind of resounded with that a little bit knowing that advances are made through studies of this nature.

Participant 12, age 81, echoed this sentiment, “I think it’s a devastating disease and anything any of us can do, we should jump on board … I’m at a stage in my life where I want to give back.”

Participants discussed how personal exposure to the disease motivated them to want to help others. Participant 24, age 81, explained:

My mother had dementia and I know how she responded to that and it was very hard on her and I thought, well, even if none of these things help me, at least maybe I could help someone else. I don’t expect to gain any benefit from these, but if I do it’s great. I am thinking, can I help someone else? I don’t think there’s anything worse. I think it’s the most cruel thing the good Lord can do…. To me, it’s the worst disease in the whole world, the suffering people go through. The best I can do it hope that my contribution of time will hopefully be helpful to someone.

While not all participants had a family history, there was a general understanding, that research requires many individuals to take part in order to make progress. When asked how to explain to others why research is important, Participant 20, age 71, responded, “It’s the only way to get the answers.” Participant 14 stated, “If there’s no research there’s no new developments and no new knowledge.” Participant 21, age 75, indicated:

I feel like I’m doing a tiny, tiny, help. I know it takes many of us to get involved in the study, but it’s like a wheel, it takes all of the spokes…. People like myself have to be here to let you all find the clues, and put the pieces together.

Participant 23, age 70, stated, “If we’re going to find a cure or treatment you have to have research. I know research gets a bad name with biases and all of that, but what else do we have?” Participant 24 acknowledged the incremental nature of research progress, referencing the knowledge received during the annual participant holiday luncheon:

It sounds like nothing is ever very good, seems like it’s always some kind of a problem. Maybe it lessens the problem. That’s the key. I don’t think you can jump in and say, here’s the answer! It takes time and a lot of people to participate in something that’s so vital to the world.

Many indicated the desire to be a part of finding a cure. Participant 27, a study partner for her sister with AD who also was a participant herself, stated, “If we want a cure, someone is going to have to find it. Maybe it’s the fact that when I see a problem, I have to solve it.” Participant 28 referenced the desire to be part of research progress and prevent future suffering, “The best thing would be to hear that they found a prevention for Alzheimer’s and I would get to say I was a part of it.” Similarly, Participant 31, age 70, indicated:

I said I’d do whatever I can, with the hope of helping find a cure or at least a way to give people hope…. I don’t think we’ll eliminate it but to help. I’ll be glad … I’d like to be part of the cure.

In order to ensure older adults in the community are aware of these opportunities to play a role in the search for a cure Participant 1 suggested that whenever anyone:

From the center is making presentations to groups of people, that they all say how good it would be if there could be some volunteers, how hard it is to get volunteers, so every opportunity speaking to a group—maybe you could get some volunteers. It worked for me.

He shared his opinion, “I think if you said to a lot of people, do you realize you could actually help save somebody’s life by volunteering?” that many individuals would enroll. He shared how he initially heard one of the study doctors describe the recruitment need, “most people said it takes forever because of the FDA to get something that does some good for people. What really we need are volunteers, it’s hard to get people who will volunteer.” Participant 1 felt repeating this direct statement of need would motivate others.

Participant 22 shared her perspective that as a culture, we are interested in finding solutions and recognize that healthy aging is a possibility that people want to work towards:

The majority of our society wants to seek solutions. I think people don’t want to say, “well that’s what happens, people get old and crazy and then they die.” I think we’ve moved past that. I have friends in their nineties who are bright and active. Some have physical challenges and some don’t. It’s beautiful that so many of us realize now, we’re losing some of that misguided thinking of, “oh you get old and you lose your mind.” I think they’re interested and curious about that.

Outside Mediators

Opportunity Awareness and Ease of Participation

There was no single pathway for individuals to learn about research opportunities. Some actively sought out opportunities, others just happened upon them. Sources of knowledge varied from media coverage, to community events, doctors, other participants, and research personnel. Regardless of source, a key factor in involvement was learning opportunities exist. Participant 2, age 69, voiced that the main reason people do not get involved is because “most people just don’t know” about the opportunity to make a difference. Participants shared various avenues of sharing research opportunities including current participants sharing experiences, social media, the radio and in particular NPR, TV, sharing information with the Alzheimer’s Association and area doctors, and local events. Participant 11, age 68, indicated, “I think there are things you can do to get the word out and let people know what’s available, but really all you can do is sit back and let people respond.”

Logistical factors played a role in participants’ decision to volunteer. Many stated having the time, whereas others highlighted the ease of the location. Participant 1 indicated:

What I have now is time. Where I work, I can take off whenever I want to and I have complete freedom. Even though it’s an hour’s drive to get down here, I’ll do anything to help out. I intend to do this for as long as I can, as long as you all will have me.

Parking directly in front of the research center made participation easier. Participant 19 shared, “I like going places where I don’t have to figure out where to park.” Participant 20 stated, “I was retired and had the time.” Many shared appreciating access to research opportunities; Participant 33 indicated, “There is so much of the country that can’t participate, but we’re so fortunate that it’s doable here.”

Comfort With Research

Participants discussed factors that led them to be more comfortable with research. Several individuals mentioned how experience with research in their careers increased their comfort. Participant 8 indicated, “I think my familiarity with research makes me not afraid with it … I think because I know what’s going on, I don’t have the sense of oh, something so dire might happen.” Others discussed how the reputation of the center or university gave them a sense of comfort. Participant 7, age 78, indicated, “The only statistic I’m aware of is of the 50 some odd universities that are involved in Alzheimer’s research, [name of center] is #1 and that’s a motivating force for me.” Participant 30, age 76, shared, “I don’t know how many institutions there are in the US but this one is right at the top of the totem pole.” Participant 25, age 75 indicated, “We knew it was run under [name of institution] and I figured it would be a valid study.” Others, like participant 9, focused on the reputation of the specific study or sponsor, “It’s got a reputation and you can see the value, it’s not a mom and pop deal. The sponsor of the study carries credibility and value.” Participant 24 shared, “The fact that it was nation-wide, not just here, and there were thousands of people involved, I thought well, they can’t all be wrong.”

Study personnel also facilitated a sense of comfort and trust. Participant 30 reported finding the enthusiasm of the study doctors contagious, sharing that the investigator’s “enthusiasm is infectious.” Participant 28 shared:

I’m one of these who trust the medical profession. Are you perfect? Absolutely not. That’s risk in life you take every day but you guys are doing all you can to protect me and find a cure. I’m willing to be a part of that process. I don’t feel any risk. You’re not going to give me Alzheimer’s.

Participant 13 explained:

I just felt confident, with the doctor explaining everything to me and saying, “you don’t have to do that if you don’t want to.” I kind of felt, from my interaction with the people here, that I felt confident everything would be ok.

Others similarly shared how the doctors and study coordinators taking the time to explain everything alleviated fear.

Sense of trust in the study personnel was enhanced by a sense that personnel were looking out for their overall well-being and providing complete care. Participant 30 explained:

It’s not like a real formal atmosphere. I feel like they’re a real caring group…. They’re really caring and if you have any issues related to the research, it’s almost feeling like you’re in the best possible care here. It’s almost a family kind of thing, a whole community project…. They’re very easy to talk to, if you have concerns about health in general—I think they’re concerned with your overall health.

Reenforcers

Monitoring

Closely connected with the concept of valuing early detection, participants frequently voiced being monitored as a benefit of participation. Many appreciated the thorough evaluation involved in research, including numerous tests and scans that may not otherwise be accessible, viewing these various procedures and tests as a way to detect problems early. This value was enhanced by a sense that if anything came up, the center would help identify necessary next steps. Participant 8 indicated, “I do feel like by staying involved, I’m more likely to catch some things than if I was just doing an annual checkup.” Participant 12 shared:

The fact that I have a doctor that’s giving me x-rays, I’m maybe more motivated to not only help because I think it’s my civil and moral duty, but physically I think it’s exciting that they’re offering so much to us…. I feel good about the doctor monitoring…. I get brain scans and medical things in addition to all of the—they’re keeping track of if I’m losing a lot of my brain activity.

Participant 14 described a natural curiosity:

I’m always seeking to learn something else and I told [husband’s name], if nothing else, we’ll be followed somehow if we get some kind of testing at a regular interval, that’s something we wouldn’t have available otherwise. If we’re getting tested, we’ll find out if there’s something wrong.

Participant 22 indicated:

I get better medical care here than I do from my GP, and if something comes up, they’ll let my GP know. I’m not able to afford this level of care. And I don’t have to because you’re doing it for me.

Participant 28 expressed feeling reassured about the care available if problems were detected:

If anything were to show up, you guys would instruct me and guide me to the proper path. I wouldn’t have a clue otherwise. I feel comfort being a part of these programs and the idea that if something like Alzheimer’s hit me, I’d be on the early side of detection and that’s a positive.

Coping and Support

Participation provided indirect benefits like a feeling of agency and sense of support. Participant 3 indicated research participation “helps you cope a lot better. I have a couple of friends I’ve recommended and they have a harder time coping than I do. They know less about the disease than I do.” Participant 24 expressed appreciating the support he received, “When I signed up for this program and they said, if anything should happen, you develop Alzheimer’s, we will take responsibility for you. To me, that was a big plus.” Participant 27 similarly appreciated, “The fact that there’s a support system and if I have a question, there’s someone I can call.” Participant 31 echoed this sentiment, “We have a lot of support here” and indicated appreciating the family care support specialist’s prompt response to questions. Participant 19 shared several benefits, including, “A better understanding of the disease, #1. Being able to help, #2. I think, knowing that you’re doing everything you can to help your spouse allows me to sleep better at night.” Participant 33 indicated participating helped them:

We just no longer felt like victims. We felt like it helped us take control back. With the diagnosis, we kind of felt out of control. This event kind of screwed up our plans. But he’s a good man, very helpful and righteous and it knocked us back. Participating in the trial took us from victimhood to warriors.

Mental Stimulation

Despite being the least invasive procedure, cognitive testing was the aspect of research involvement participants most frequently mentioned finding difficult and unpleasant. Participant 33’s husband, a 63-year-old with early AD, explained, the testing “sort of highlights the fact that you’re losing certain capabilities. In day to day life you can function pretty well but it really highlights it.” Participant 1 discussed how he could do the MRIs and lumbar puncture without trouble, but found the cognitive testing stressful, “It’s the mental testing that gets me.” Despite this challenge, several participants indicated testing helped serve as a form of mental stimulation. Participant 7 indicated, “When I take these tests, especially these cognitive things when I’m read a story and I have to read it back, I think I do ok. But it’s pushing me and that’s what I need.”

Feeling of Value

Many of the studies participants were involved in did not involve any monetary compensation; accordingly, many participants indicated compensation was not important. Instead, participants discussed appreciating feeling that their contributions were important and valued. Participant 21 indicated she, “was invited to the luncheon last Christmastime … I was very happy I was invited because he gave us a lot of information and data. It made you feel like what you were doing was very important.” Participant 26, age 72, indicated compensation would be nice, but that, “I like the feel-good feeling and that’s compensation enough.”

Positive and Enjoyable Environment

Participants indicated how the positive and supportive atmosphere made the experience more positive overall. Participant 12 indicated:

Everyone I’ve met has been very positive and very easy for me to relate to and deal with. I’ve met excellent people in the tests I’ve been through…. Every experience I’ve had has been very organized, very open and the people seem to enjoy their work. The atmosphere is positive.

Participant 22 echoed the sentiment of enjoying the research personnel:

I have especially loved the people who are a part of this research. I think it attracts people of a certain character. There is turnover, which is interesting because I get to meet more people. The people are really bright. I’m a person who seeks that stimulation. It’s really fun to come here and talk about interesting things with people who are sparkly…. One of the things I love about the way you do your research is when I get home, and I think of something I didn’t ask, everyone is really approachable so I have no hesitation to picking up the phone and asking a question. It’s a very attractive thing to me and comforting.

Similarly, Participant 24 indicated:

I think people here are concerned and I appreciate all of the personal touches, the luncheon, the hug. My wife and I feel very much comfortable. Everybody is so very nice to us…. You come in here and the people are smiling, they talk to you and they ask how you are, you can be relaxed and not tense. Truly, to be honest with you, I look forward to coming and talking with [the study coordinator] and some of the other people.

Participant 28 elaborated, “I will add that the people who work here are extraordinary, I enjoy the relationships.” Participant 8 indicated how the positive social experience was not only enjoyable, but also may help meet a need for social connection:

I don’t recall working with anyone here who I didn’t enjoy the interaction…. One of the things I’m learning in retirement is that we all need some social connections and as we age I think those social connections become more important. I think it’s probably important for those of us who are older to have that friendly greeting. I think the Sanders-Brown staff have always made me feel like they were glad when I came in.

Participant 28 summarized, “You feed me, take care of me, you’re nice to me. What more could I ask for?”

This appreciation of the environment seemed to parallel an overall enthusiasm for participation. Despite the intense commitment involved in research, many actively sought out future opportunities. At the end of the interview participant 7 was asked for any additional questions, he responded, “Is there another research study around the corner somewhere?” Others, such as participant 26 and participant 25 echoed this sentiment, with statements such as “anything we are eligible for, we’ll do” and “As long as I’m physically or mentally able, I want to stay a part of these studies!”

Discussion and Implications

Discussion surrounding recruitment and retention for clinical research often focuses around incentives and logistical issues (Yancey, Ortega, & Kumanyika, 2006); consideration of motivations and goals may be equally important. Research is exploring how to incorporate greater levels of feedback into research participation and the potential impact of sharing results with participants (Geraci, De Forrest, Hughes, Saenz, & Tirso, 2018). Hopefully these efforts will be translated into practice in user-friendly ways to help participants receive the feedback they desire. Efforts to keep participants informed on study progress would also be worthwhile. Many participants appreciated being part of a larger research program focused on efforts to prevent and cure AD. Helping participants identify how their local research contributions move the science forward helps enhance the sense of value of participation and encourage future participation. Strategies to provide this context may vary from newsletters, to town halls, or luncheons.

Staff can also encourage retention and future involvement by creating a caring and supporting environment. Positive environments are created through personnel being professional, warm, and approachable, and by making efforts to show participants are appreciated and valued, whether through a smile, a hug, a caring conversation, or a luncheon. By receiving care, support, and monitoring throughout the research process, participants can benefit regardless of intervention success. Participants’ experience of care and support throughout the research process may reflect the center’s culture and philosophy rather than the reality of all AD research studies. Efforts to increase the likelihood that research participants across institutions experience these same benefits could be encouraged by advocating for clinical trial funding to consistently include funds for social work support and participant appreciation events. Centers offering AD studies could also provide more resources for other sources of support, such as the Alzheimer’s Association or local support groups, which often get underutilized, especially by minority groups (Cooper, Tandy, Balamurali, & Livingston, 2010; Mukadam, Cooper, & Livingston, 2013; Navaie, 2011). Finally, advocating for additional funds from study sponsors to enable longer-term clinical follow-up of participants could enhance participants’ feelings of support. These benefits, combined with a sense of being valued and helping society, encourage continued and future involvement. A feedback loop seems to develop where reenforcers experienced during participation encourage continued engagement (Henderson et al., 2008; Murphy et al., 2008). Positive relationships with researchers and viewing participation as a meaningful and valuable activity encourage participation (Hedman, Hellström, Ternestedt, Hansebo, & Norberg, 2018).

Ethically, research participation should not be about persuading or incentivizing participation. Rather, concerted efforts are needed to ensure participants of diverse racial and socioeconomic statuses are provided with enough information to understand the potential benefits that may appeal to them. Efforts to enhance recruitment should promote understanding of how individuals can play a role in finding a cure for AD, as well as the value of early detection and active monitoring.

This study was limited by a fairly homogeneous sample that was predominantly Caucasian and highly educated, preventing identification of differences across groups and introducing the need to interpret these findings with caution when consider other racial and ethnic groups. The recruitment need stated in the National AD recruitment plan addresses both absolute number of participants and increased diversity of participants. Numerous studies present barriers to minority engagement and lower levels of minority participation in clinical trials (Barnes & Bennett, 2014; Grill & Galvin, 2014), attributed to a range of factors including a legacy of research mistreatment and distrust as well as ongoing experiences of unequal treatment and racism (Lincoln, Chow, Gaines, & Fitzgerald, 2018). Accordingly, to develop research comfort among minority populations and build trusting relationships between researchers and community members targeted efforts may be needed (Hughes, Varma, Pettigrew, & Albert, 2017; Williams, Meisel, Williams, & Morris, 2011; Williams et al., 2010). Certain factors in the AMOR model—e.g., outside mediators, such as time and convenience, awareness of opportunities, and research comfort—may need to be targeted to enable participants of diverse backgrounds to be in a position to make similar considerations regarding benefits (Dilworth-Anderson, Pierre, & Hilliard, 2012). Some potential strategies to support these efforts may include developing educational materials that include rates of AD among specific populations and the potential benefit to their communities, inclusion of respected individuals in educational efforts, and ensuring cultural competence, and when possible racial congruence, among research staff (Lambe, Cantwell, Islam, Horvath, & Jefferson, 2011). Wong and colleagues (2019) suggest in their review that community outreach and collaboration with health care professionals may be two of the most effective approaches to encourage initial participation among minorities and that, while less studied, communication and sustained community relationships support retention. The AMOR model allows for variation in the salience of factors for individuals, and attention to this variance across groups is an area of future research that is sorely needed. While we hope this model will enhance understanding of recruitment motivations across groups, this should be tested empirically prior to wide application. Prior research suggests that while there are many commonalities to views about research and research procedures, there are potential differences among/racial ethnic groups (Boise, Hinton, Rosen, & Ruhl, 2017). Accordingly, a crucial area for future investigation is to explore the AMOR among various minority populations and identify additional constructs that may emerge or nuanced roles of those already discussed. Unfortunately, the overwhelmingly White and highly educated nature of the participants in the current study reflects both the local and national reality of the demographics of AD research participants—and clinical research participants in general—limited the ability to explore this area (Oh et al., 2015; Romero et al., 2014; Zhou et al., 2017).

Several other limitations of the present study should be noted. First, the study was conducted in a single research center and participant experiences and motivators may vary at other sites. Further, for the four impaired participants whose study partners engaged in the interview regarding their participation without their involvement, some factors may have been overlooked and the ideas represented may not entirely reflect the participant’s motivations; however, these study partners were also likely engaged in earlier decisions and therefore had valuable, even if not fully comprehensive, insights. In addition, this study focused specifically on longitudinal and repeated research involvement and caution should be taken in over-generalizing these findings. Despite these limitations, this study highlights there is no one size fits all answer and that several factors typically play into decisions to participate. Insights from these super-researchers may not apply to those who are completely research-adverse; however, for those who are not aware of the opportunity or are currently undecided or reluctant, these findings may suggest areas to emphasize or intervene to overcome ambivalence and encourage participation. Future work will have to explore the extent to which these findings generalize to those who are not super-researchers. The identification of these factors and development of the AMOR model of AD research engagement highlights important areas for investigators to consider when designing studies, for sites to consider when developing recruitment strategies, and for potential participants to consider when contemplating involvement. Further research should explore ways to craft messages to enhance engagement that emphasize motivators; this is especially needed to increase engagement of underrepresented groups who may be disproportionately impacted by AD and other dementias (Alzheimer’s Association, 2018). While efforts to increase AD research engagement are needed broadly, concerted efforts to engage minority groups are imperative to ensure that discoveries are effective across groups.

Funding

This work was supported by the National Institute of Health/National Institute on Aging [1 P30 AG028383].

Conflict of Interest

None reported.