Qualitative Evaluation Informs Understanding of Motor Cognition and Therapies in Older Adults with Mild Cognitive Impairment

Abstract

Background:

10% to 20% of Americans aged 65 and older have mild cognitive impairment (MCI) with 10% progressing to Alzheimer’s disease (AD) each year. Underserved groups, including African Americans (AAs), are among the most vulnerable to MCI and AD. Although evidence continues to amass, the benefits of exercise and movement for AD is still understudied in AD.

Objective:

Understanding the attitudes, perceptions, and beliefs about motor-cognitive integration and examining the physical activity of a sample of predominantly Black women community members with self-reported memory problems will allow improved recruitment and refinement of multimodal interventions designed to improve motor-cognitive and cognitive function.

Methods:

We conducted focus groups with older adults who reported subjective memory complaints (n = 15; Black: n = 12, White: n = 3, mean age 71.7 ± 5.8).

Results:

Findings from thematic analysis showed most participants knew of benefits of exercise. However, most participants reported not getting adequate exercise due to factors such as pain, increased responsibilities, and fear of injury. Despite barriers, participants expressed enthusiasm for multimodal interventions designed to target body and brain health and provided several suggestions to improve or enhance the proposed interventions.

Conclusion:

Results provide useful insights regarding improving participation among historically under-represented groups in clinical movement-based research. Participants’ discussion focused primarily on the way motor-cognitive integration prevents falls, maintains memory, and provides a social benefit. The reported perceived benefits and limitations of exercise, as this population understands it, can help researchers and physicians better engage the community for lifestyle changes that will support greater motor-cognitive health.

INTRODUCTION

Mild cognitive impairment (MCI) is defined as an observable decline in memory that is not severe enough to interfere with daily life [1, 2]. Ten to 20% of people aged 65 and older have MCI and 10% progress to Alzheimer’s disease (AD) each year [3]. Average total direct medical costs are 40–50% higher for those with MCI than those without [1]. The growing cost of care for AD and other dementias is expected to rise from 214 billion dollars in 2014 to 1.2 trillion dollars in 2050 [4]. Based on recent literature, MCI can be seen on a continuum with AD, with MCI often being the prodromal phase of AD [5]. MCI can lead to stress along with risks to safety including falls and medication noncompliance [3]. Currently, no treatments reverse the progression of MCI to AD. Existing medication regimens intended to slow AD symptoms have shown small to modest decline in disease progression when tested with Alzheimer’s Disease Assessment Scale (ADAS) scores. This short plateau eventually resumes its decline after 6–12 months on the drug [6]. If the drugs are stopped at any point during treatment, e.g., due to side effects, patients revert to the same ADAS scores as the placebo group [7].

AD and its precursors can lead to a decline of motor-cognitive integration, defined as the ability to integrate and modulate complex cognitive and motor abilities [8–12]. Motor-cognitive integration is essential to functioning in daily life as it is involved in essentially all aspects of life including memory, movement, and effective thinking processes. People with MCI have decreased motor-cognitive function that leads to cognitive deficits in working memory, central executive function, and attentional resources compared to nonimpaired age-matched controls [5, 13–17]. MCI is a heterogenous condition affecting a broad range of cognitive domains including executive function, language, memory, visuospatial function, and attention/working memory. There are overlapping cognitive domain symptoms for people living with MCI, and a problem with subjective memory is one of the most common presenting complaint [13–17].

Executive function is a major domain of cognition involved in motor-cognitive function, and is the mental processes needed when one uses effort to concentrate [18]. Executive dysfunction is common in AD and is associated with decreased cognitive functional performance [19, 20]. Declining executive function predicts onset of physical frailty and performance on executive function measures can predict decline independent of episodic memory [21, 22]. Impaired executive function presents at early stages of dementia, including in MCI and is an indicator of a higher likelihood of transition to AD [23]. Studies have demonstrated that focusing on executive function skills (e.g., those that involve selective/divided attention and inhibition and switching) can help retain function for patients in early stages of dementia [5]. Thus, a focus on improving functional skills should be emphasized in persons with MCI [5].

The preclinical period is ideal to intervene with cognitive and motor-cognitive therapies to slow progression from MCI toward dementia. Early studies have demonstrated that exercise has potential for improving executive and motor-cognitive function and slowing MCI to dementia progression [24, 25]. Moderate to vigorous intensity exercise two to three time a week can improve strength, gait speed, and performance in activities of daily living (ADLs) and may slow cognitive decline [3, 24–28]. Aerobic exercise has been shown to be beneficial in reducing neurodegeneration in MCI and AD [29]. Exercises based on executive function skills, like multiple step dances, have also been shown to be both safe and beneficial for slowing mental decline [30–32]. Combining movement with mental tasks via motor-cognitive training has produced significant improvement in individuals with neurologic disorders by improving gait, balance, and cognition [8]. This focus group is a part of a larger trial studying the cognitive and motor changes associated with using partnered rhythmic rehabilitation (PRR), a moderate intensity social dance, in comparison to walking in people with subjective memory complaints.

Black women have increased risk of developing AD and are more likely to suffer from MCI [33]. AD is the fourth leading cause of death in Black women in the United States [34, 35]. Black women have the lowest percentage among any older adults in reaching the recommended exercise guidelines of 150 minutes a week [36, 37]. Not enough information about perceptions of motor cognition, exercise, and their relationships to MCI and dementia among Black women exists to make recommendations or guide treatment. Also, various systemic factors make it challenging for racial and ethnic minorities to engage in research. These factors include limited access and opportunities to participate in research; cultural bias; mistrust of the healthcare system; viewing research as biased toward Whites; and a limited number of researchers who are underrepresented minorities [38].

This study is designed to further understand the perspective of older predominantly Black women community members with self-reported MCI regarding motor cognition. While it is often difficult to use patient-reported outcomes to study neurodegenerative diseases, our inquiry will allow insight into real life functional impairments present with MCI as well as discovering which self-reported activities mitigate these deficiencies [39]. To inform better therapies for patients with motor-cognitive problems and MCI, we sought to learn more about attitudes and beliefs towards motor-cognitive integration and exercise in community members who reported subjective memory complaints. Many parts of the world, such as the European Union, are also seeking to incorporate mission-oriented research by increasing representation of and specificity for underserved populations [40–42]. This present work attempts to answer that charge. We conducted focus groups primarily made up of Black women from the surrounding community to gain understanding that would impact treatment of motor-cognitive impairments in Black women. We oversampled Black women in the focus group to assist in identifying hindrances to research in motor cognition for this population and allow recruitment efforts to be targeted on a more inclusive and representative study population. We also wanted to gain insight into which types of exercise these community members with self-reported memory complaints thought would lead to enhanced motor-cognitive integration and which exercise regimens patients prefer. We spoke to a group of predominantly Black women from the Atlanta metro area to facilitate an inclusive and representative study population, making the overall study findings more inclusive of under-represented groups. Increasing our knowledge of community members’ feelings regarding nonmedical treatment, especially exercise, for addressing motor-cognitive and functional task performance is essential to facilitating acceptance and adherence to non-pharmacological treatments as well as learning how best to address these particular impairments.

METHODS

This study was reviewed and approved by the Emory University Institutional Review Board. All participants provided written informed consent before participation.

Qualitative evaluation design

A formative qualitative evaluation was conducted before the implementation of the PARTNER (acronym derived from Partnered Rhythmic Rehabilitation for Enhanced Motor Cognition in Prodromal Alzheimer’s Disease) study (NCT04029623). PARTNER is a clinical trial with the primary aim of determining the safety, tolerability, and satisfaction with PRR, a moderate intensity social dance, in people with MCI. The secondary aim of the PARTNER clinical trial is exploring potential mechanisms by which PRR affects MCI. Before starting PARTNER, we conducted two focus groups to ascertain attitudes, beliefs, and knowledge of under-represented members of the target population of people with MCI regarding motor-cognitive integration, as it relates to one’s health and function. The focus groups were also intended to identify potential barriers and facilitators to implementing exercise programs that focused on motor-cognitive impairments, like those offered in the PARTNER trial. We used the findings from the focus groups to define the level of understanding of motor-cognition and its impact in daily life, to guide and shape recruitment efforts gain insight into potential participants’ desired outcomes and refine the multimodal PARTNER intervention design.

Focus group participants (see Tables 1 and 2)

Table 1.

Focus group demographics, N = 15

	N (%)/Mean (SD)
Age (y)	71.7 (5.8)
Gender
Men	2
Women	13
Education (y)	14.5 (2.1)
Race
Black	12
White	3
No. of conditions	3.3 (2.2)
No. of medications	2.6 (2.0)
Hospitalization in past 3 years
Yes	2
No	13
No. of falls in the previous year	0.80 (0.9)
Fear of falling (scale of 1–7, 7 indicates great fear of falling)	2.9 (1.7)
Quality of Life (scale of 1–7, 7 indicates high quality of life)	5.3 (1.1)
Marital Status
Married	8
Separated	3
Widowed	3
Single	1

Table 2.

Participants codes grouped by demographics of race and gender

	Women	Men
Black	F1P3; F1P4; F1P6; F2P11; F2P13; F2P14; F2P15; F2P16; F2P17; F2P18; F2P19	F1P1; F1P5
White	F1P2; F2P10; F2P18

We recruited 15 adults, primarily Black women, between the ages of 50 to 90 years old who reported memory complaints to participate in the focus groups to discuss motor-cognition, the interventions, Partnered Rhythmic Rehabilitation (PRR) and a Walking Group and the PARTNER trial. Participants were recruited by the PI and staff, through visits to community support, and educational groups, and health fairs; advertisements and mail out announcements; distributing flyers at neurology clinics and Brain Health forums; via the Alzheimer’s Association; and through ClinicalTrials.gov. Participants were given a survey that included demographic and medical questions including race/ethnicity, age, gender, number of medical conditions, fear of falling, quality of life, etc. Several of the participants had been recruited from Emory Goizueta Alzheimer’s Disease Research Center and had received formal testing and diagnosis of their cognitive function. Other participants fulfilled criteria for participation in the study by reporting memory complaints but did not have a formal diagnosis of MCI. The participants’ average age was M = 71.7, SD = 5.8. Twelve participants were Black and three were White. Thirteen were women and 2 were men. On average, the participants had M = 14.5 (SD = 2.1) years of education, which is equivalent to an Associate’s degree. Overall, participants reported having a good quality of life on a seven-point scale (1–7 with 7 being the highest); mean = 5.3 (SD = 1.1) range: 4–7. (Table 1).

Procedures

We conducted the two focus groups between October and November 2019. Each focus group lasted 90 min, with the first 30 min used to obtain written informed consent and administer a short demographic and health survey. To facilitate group discussion, each focus group was limited to no more than 10 participants. Participants were divided into groups by availability for the two different dates, not by demographic data. Refreshments were served and transportation was provided to Emory University for some participants without their own means of transportation.

The second author, an experienced qualitative researcher, moderated all focus group sessions. At the conclusion of the major questions of the focus group guide, the last author promoted further discussion on the concept of motor-cognitive integration and presented details regarding the planned interventions. Coauthors assisted with obtaining informed consent and administering surveys; two study team members recorded field notes based on these discussions, including documenting observed nonverbal interactions and behavior of participants during each session. Sessions were recorded and transcribed verbatim.

Focus group questions (see Table 3)

Table 3.

Older Adults Focus Group Questions

Question	Sample probes
1. I’d like to start by going around the circle and ask each of you to think about what “motor-cognitive integration” means.	• Can you give me examples of activities where you have to both think while moving from place to another? • Why is it tough sometimes to both think and do at the same time? • Can you share examples of when it was hard to move around and think?
2. What experiences have you, a family member, or someone else you know ever had related to dance class or exercise?	• What was that experience like? • Probe for both positive and potentially negative experiences. • Probe for factors that influenced participants’ experiences.
3. What health conditions that you or your family have would affect your ability to participate in physical activity programs?	• Do you see physical activity as a good way to address problems with motor-cognitive integration? • Probe for positive as well as potentially negative attitudes.
4. Give Overview of trial goals (lay summary) and then ask: What are your initial impressions about this trial?	• If we came to promote this trial at your community, would you want to participate? Is the time commitment a problem? What questions would you have? What would you need to know? • What would help you get to the regularly planned physical activities? What would make the physical activities fun? • Probe for factors that would promote participation and potentially limit participation. • Probe for recommendations participants have for promoting participation.
5. Based on our discussion today, does anyone have any final thoughts? Recommendations?

The structure and guide for discussion began with questions gauging participant understanding of motor-cognitive integration and how it is experienced in everyday life. Next, we assessed participant’s personal experience with dance or exercise classes, delving into positive and negative experiences along with proposed factors causing these feelings. Subsequently, we asked how health conditions affected participants’ ability to participate in physical activity and if they saw physical activity as a viable method to address problems with motor-cognitive integration and other health issues. Lastly, we presented an overview of our proposed intervention and probed the participants’ impressions regarding the concept of the PARTNER study. The probing included discussing participant’s thoughts on the PRR dance and walking aspects of the study, as well as the length of time for the project. We aimed to identify factors that would promote participation and potentially limit involvement, whether people preferred walking or dancing and why and any recommendations for increasing community engagement with the research study.

Data analysis

We utilized a deductive and inductive thematic approach to analyze the data [39]. First, we created a codebook based on aims of the evaluation. As the analysis progressed, we added emergent themes to the codebook. Two primary coders (the third author and a trained research assistant) independently coded the transcripts. These coded transcripts were reviewed by the first author to reconcile any coding differences. The codebook supplied the foundation for final theme development. We used NVIVO 12 software to manage all qualitative data and to facilitate data analysis. To protect participants’ anonymity, we labeled them using numbers based on their focus group (i.e., Focus Group 1 or Focus Group 2) and their participant number in each group (i.e., participant 1). Focus Group 1 included 6 participants (F1P1-F1P6) and Focus Group 2 included 9 participants (F2P10-F2P19).

RESULTS

Four major themes emerged from the focus group discussions and are described below with their subthemes. To better understand and illustrate these patterns, we indicate the number of times each theme occurred in the data and the number of participants who iterated each subtheme [44]. See Fig. 1 for further details on the number of iterations for each subtheme.

Fig. 1.

Number of Mentions for Each Subtheme.

Motor-cognitive integration and its relationship to memory and falling

The initial probe for each focus group was discerning what the participants knew about motor-cognitive integration. The participants in both focus groups connected declining motor cognition to increasing age and as the discussion continued, both focus groups talked extensively about motor-cognition’s effect on memory and falling.

Perceptions regarding motor cognition

When participants expressed their thoughts on motor-cognitive integration, they often related it to their daily lives. Some responses were general such as a Black woman stating, “The ability to move. Whether or not I’ll be able to do it and how fast, how often and the end result,” (F2P14) while others were more practical stating, with a Black man reporting “going to the grocery store and going from aisle to aisle. So, I go down my list without having to backtrack all the time” (F1P1). Most participants connected a brain function and a movement with a Black woman saying, “I think it is the connection between the brain and signals that it sends to the body to respond to what you wanna do” (F1P3).

Memory as you age

Participants expressed discomfort with the process of aging and losing ability to perform life functions. Memory was brought up nineteen times with participants mainly focusing on their slowing memory and what they could do to maintain their short-term memory. In one focus group a Black woman stated, “I live with stairs. I may go downstairs to pick—to get an item, but by the time I get downstairs, I can’t for the life of me remember why I’m down here” (F2P18). When this was stated, many other participants nodded in agreement and expressed understanding phrases such as, “I hear you” and “Happens to me too.” A remarkably similar story was told in the other focus group with a Black man relating, “I got into another room to get something and I’ll get slightly distracted by something and then I’ll have to go back and wait and come back again to get what I was gonna get” (F1P1). When probed further a Black woman stated, “It’s a challenge. I think, as you age, the things you did automatic, you have to be more conscious” (F1P6). Participants in both groups expressed concern that if short term memory starts to decline, soon one may forget basic things like driving or have trouble walking while talking which can lead to falls.

Falling as a major concern

Falls came to the forefront of the conversation eleven times with many participants expressing concern for falling. During the initial discussion on motor cognition, a Black woman responded that motor cognition is, “being able to stay on a treadmill, keep up with the speed and run fast enough, so you don’t fall” (F1P6). Later, when probed by asking if participants felt they were at higher risk for falling, a Black man stated, “Yes. In fact, I’m thinking about getting a cane to walk with. Not because I’m stumbling, but because I’m concerned about my balance” (F1P1). A Black woman told a story about a time when the individual was attempting to bend over and wash a rug, “And, of course, my foot got caught under it. And there wasn’t anything I could really do. I bust my knee up. You know? And I was like, I’ve never fallen … flat-on-my-face like that. And I didn’t tell anybody ‘cause I was embarrassed” (F1P6).

Exercise as medicine

A major theme in regard to exercise is that patients saw it as a medicine. In both focus groups, participants spoke to the mental and physical health improvements they felt were attributable to exercise and well as the social benefits.

Social benefit of exercise

Most participants hailed exercise as something that improved quality of life. One should note that this focus group occurred before the COVID-19 pandemic and for many participants exercise brought enjoyable social interaction. When asked about why people exercise, a Black man related:

F1P1: One of the reasons why we signed up at the senior center [exercise program] was [my wife and I] both getting bored because we’re not doing enough. Where it’s too easy. My wife sits on the computer, or I’ll read a book. And we’re wantin’ to get out of the house.

Facilitator: Yeah. So, there is a social aspect in it for you?

F1P1: Yes.

A Black woman stated that she truly enjoys exercise because, “I exercise with a neighbor sometime. She walks, and we’ll walk together. And with other friends. So, it’s very good. It helps the mind. … So, it really makes a difference in my life. Even when I don’t feel good, I do try to get up and do some exercise. ‘Cause I always feel better after the exercise” (F1P6).

Exercise improves physical symptoms

Multiple members of the focus groups had chronic pain or mobility issues that made exercising sometimes very uncomfortable, but often these participants were the ones that were most excited about exercise. They felt that it improved their pain symptoms even though they were sometimes in discomfort at the start of their exercise. A Black woman with arthritis stated,

“Well, I do know that exercise is good for you. And I truly believe that if you can stay active, you will feel better. I know that some of the things that I’ve been put through as far as exercising, sometimes, I’m hurting, and doing those various things that he thinks are really good for whatever the problem is typically, it does make me feel better. It’s just the idea of doing it while I’m hurting, is not good” (F1P4).

A Black woman with back pain echoed this sentiment, relating, “You know, that’s one reason why I stay active. Even when I’m hurting, or in pain. If I can’t move my knees, then I work my feet or my hips or some other part. Because stretching it out and, at least, trying to get some movement always seems to make me feel better” (F1P6). The same focus group member later expressed that increased exercise reduced their need for medication. She told the group,

“Particularly, it helps with being pain-free, or minimizing the pain. I find, days, if I don’t—kinda get in that little slump, or get into a depressed mode, and I’m not doing anything—then I’m hurting. And I need medicine versus, you know, now I’m virtually medicine-free most of the time” (F1P6).

Exercise improves mental well-being

Even focus group members who had no physical symptoms still found a lot of benefit from exercising, with mental improvement being mentioned nine times. Many expressed that it was an improved mood and being more cognizant of their surrounding that was the most important benefit from exercise. A White woman who had previously mentioned that she was struggling with depression told the group, “when you’re feeling sad or down or lonely or whatever, that getting outside in the fresh air and walking … It’s good medicine” (F2P10). In addition to improving mood, multiple members expressed exercise’s place in preventing falls and other injuries exemplified by a Black woman’s comment,

“When you don’t exercise, you don’t — you’re not agile and so when things come up in your path or in your way or something happens, like a hill or whatever, you don’t have the ability to catch yourself or to react to help yourself, but when you do exercise, I notice that you can do so many things at once without even thinkin’. It’s just automatic” (F2P15).

Barriers to exercise

Participants identified several barriers to obtaining adequate exercise including pain when exercising, increased responsibilities and limited motivation.

Pain

While there was universal agreement of exercise’s benefits, some participants were not able to exercise at the level they sought. Four participants identified pain as being the most limiting factor. While some participants felt that exercise was a medicine for pain, others found that they were unable to exercise with their symptoms. A Black woman with back pain shared,

“I was a very active person until I started having back problems. And behind two back surgeries, and all of the injections that you could get. Like the NSAIDs and the epidural? I’ve had all of those. I’ve had eight nerves burned. And I’m still having pain. So, I’m not really into moving like I ought to be at this point. Because I haven’t seen that what I’ve been doing is really helping me get rid of the pain that comes on. But I would love to move because that’s been something that’s been a part of me” (F1P4).

Increased responsibilities and limited motivation

Some participants were not exercising as much as they knew they should without a particular medical reason. Four focus group members spoke to increased responsibilities and limited motivation as their largest hindrances. A Black woman shared,

“I’ve always loved exercise and a lot of the exercise came with my children and raisin’ them, but then as we get older, we don’t think as much about it until we have disease or something that encourages us to change our way of eating and our habits. Something else that changes it is when you become a caregiver. I was a caregiver for my husband, then my dad, then my mother, who just recently passed. You put all of your energies into that, and you don’t always take time to do the things you normally do” (F2P16).

A Black woman responded to this comment by stating, “As far as exercise, I love to exercise, but I’m not doin’ any now because, as she was saying, I’m a caregiver for my husband. I can’t really leave him alone … I love exercise. I just don’t do it now as much as I should. I feel so much better when I do, but just not doin’ it” (F2P14). After this comment, other group members offered to sit with her husband so that she could exercise and do other necessary tasks of living such as laundry and shopping.

Other participants reported they had lost their motivation to exercise. One Black man stated,

F1P1: And I would go actually right on the beach, probably, three or four times a week and play racquetball, and everything. Then, as I got into my 50 s, it just diminished to where I went to work and came home and didn’t do anything.

Facilitator: Do you think it was ‘cause you were busy?

F1P1: I think it’s just because that I didn’t have the motivation to do anything. I mean, I’d cut the grass, and stuff and all. But I didn’t have the motivation that I had to be active like I did when I was younger.

Attitudes toward participation in a movement trial that might improve motor-cognitive integration

At the end of the focus group question guide the facilitators presented an overview of the PARTNER study. Participants were asked to comment on the study concept and suggest improvements.

Positives of joining

When the general framework for the PARTNER trial was presented to the focus groups, both groups expressed excitement and eagerness to join. A Black woman stated, “Yeah. Sign me up. I’ve very interested in any type of movement that will help the coordination and the integration. Because those are challenges sometimes. And if I can improve upon that, so be it” (F1P6). A Black woman from the other focus group who had participated in a previous PRR based research study shared, “My last big challenging was the tango with Doctor back there and I enjoyed it very, very, very much. I really enjoyed it and I thank God that I’m still able to move around. I have no complaints with dancin’ because I love it” (F2P12). Participants asked for flyers to give to their social groups because they felt many of their peers could benefit from this trial. A Black man asked, “How soon would this program start? Because I’d like to get our RV club involved” (F1P5).

Hesitations to joining

Many people were wary of participating because they were worried that the movements would be difficult and cause falls. One Black man stated, “I don’t think I’d be interested in [dancing] because it’s not just that I have two left feet— but I’m moderately clumsy in some of the things I do” (F1P1). For another participant it was, “the variety. I, too, get bored easily” (F2P16) while for a Black woman it was centered around motivation and, “being committed to doin’ it” (F2P13).

Walking or dancing

When discussing which group, walking or dancing, the participants would prefer, there were differing opinions on which was preferable with some participants being happy with either. A Black woman, who was more interested in the walking intervention than the dancing intervention explained her reasoning to want to walk by asking, “what I’m saying is does it have to be tango or can it be tango mixed with something else, you know what I mean? Any other kinda dance?… That could be— what’s that country line dancing? What is that? Square dancing” (F2P15). Other participants were eager to be in the dancing group with a Black woman expressing, “Sign me up for the dancing. I’m ready! I’m bringing the heels, but my flats also” (F1P6). While many participants were happy to be in either group, many had strong beliefs about what type of movement they wanted to do. A Black woman participant had the following conversation with the facilitator:

Facilitator: Are you okay with tango or walking”

F2P14: I prefer walking

Facilitator: You have to remember it’s flipping a coin ‘cause it’s a clinical trial. When you’re part of a study, a clinical trial, that means you get — you’re either the placebo or the other and they flip coins

F2P14: Well, I’m randomly walking.

Joining to benefit the future

Many participants expressed their desire to participate in a PRR trial not only for the benefits it would provide them in the short term but for the aid it could provide for future generations. A Black woman described PARTNER as, “absolutely wonderful, for more reasons than one. Not only will it help me, but it will help somebody else” (F2P16). Another participant, a Black woman, expressed, “We need to take more advantages of study programs because it may not benefit me at the moment, but down the line” (F2P13).

DISCUSSION

Most participants of both focus groups were well versed in the benefits of exercise, especially when it came to pain and mental health. After an initial definition of motor-cognitive integration, participants had a good overall understanding of its relation to daily life as well as knowledge of how exercise could allow people more functionality as they aged. Participants expressed fears of losing independence, especially after a fall and voiced that they believed exercise was a way to keep them safe and independent. It has been well documented that exercise has many benefits for treatment of musculoskeletal pain [45], anxiety and depression [46–48], improved memory [49, 50], and preventing falls [51]. Participants touched on many of these health benefits with many personal anecdotes. For some, it was not about the health benefits but the social benefits, which are increasingly important with increasing age to prevent mental decline [48]. These motivators kept many of the participants exercising and made them excited to spread its benefits to others. Exercise also seemed to have brought many of these people closer to their loved ones, neighbors and community members making a larger shared community as shown in the Results section, “Social Benefit of Exercise”.

Multiple members stated that immediately after they exercised, they felt more stable and had improved mental function, but long-term benefits of exercise were not discussed at length in either focus group. In both focus groups, fears of memory loss and debilitating falls were shared by many participants, but exercise as a preventative aid was not mentioned. This omission demonstrates work still needs to be done to relay the long-term benefits of exercise to community members, patients, and the general public.

While many of the benefits of exercise were well known and personally experienced by most of the participants, only a handful appeared to be getting adequate exercise as defined by the US Department of Health and Human Services, which is 150 minutes per week of moderate exercise [37]. The main two barriers reported were multiple responsibilities and active pain. It is well known that women have historically taken on the role of caregiver and homemaker much more often than their male counterparts. Three women and zero men stated they had stopped exercising during their life due to increased caregiver responsibilities. During one focus group a certain shared struggle was demonstrated as the participants offered to help ease the burden of some of the caretakers by either sitting in their place or bringing their own loved one to join as mentioned in the section in Results, “Increased Responsibilities and Limited Motivation.” This shared resiliency is something that can only be brought about by social interactions and gatherings, something that many participants who had limited time to exercise were often most frustrated with losing. The potential for increasing caretaker responsibilities as one ages and its effect on exercise needs further research.

Focus group members’ qualitative responses may have suggested that they understood motor-cognitive interaction and the role that it plays in daily life. All participants joined the discussion on motor cognition and most used a real-world example that tied together a brain function and a movement such as, “walking and chewing gum.” Participants’ comments suggested they comprehended the link between physical activity, socialization, and brain function, especially memory, with these benefits being a major reason many of them exercised. The fear of memory loss and the inability to integrate motor-cognition properly was a major fear for many focus group members, with many believing this impairment will lead to falls and loss of independence, a worst-case scenario for many participants. These fears are similar to what recent literature demonstrates as common barriers to exercise for Black women [35, 37]. Understanding community member’s understanding of motor cognition and exercise as well as the hinderances to exercise can help guide realistic treatment for people with MCI and AD.

Findings presented here include insights from participants that represent a group including predominately minority women. Our sample was representative of people with self-reported quality of life ranging from moderate to high demonstrating that most participants faced at least some challenges in their life. Insights from this group are invaluable as minority women are one of the most underrepresented demographic groups in medical research and have a disproportionately high rate of dementia compared to other demographic groups [36, 53]. Although research shows fear and mistrust of clinical research can be seen across multiple racial and ethnic groups, listening and adapting are highly effective ways to address these concerns and change the status quo [54, 55]. Due to a history of injustice minority populations historically have low physical activity, adding to the increased health disparity seen across race and ethnicity [38]. Physical activity is essential for maintaining a healthy lifestyle and minimizing serious complications from disease. Learning the motivations and barriers directly from this population suggests that starting the process of curbing the disparity in physical activity begins with practitioners and researchers focusing on what community members gain from exercise including decreased pain, improved mental well-being and greater socialization while understanding the hindrances that make exercising difficulty such as pain and increased responsibilities.

Utilization of evaluation findings and implementation of PARTNER

Results from formative research presented here provided several insights for both the recruitment and implementation of the PARTNER study. For recruitment, the focus groups reinforced focusing on the benefits of exercise, especially long-term benefits, for historically hard to reach populations. Given the importance of social interaction of exercise for many participants, recruitment locations should include community outreach in health fairs, visits to senior centers and other community events. While community outreach can be labor intensive, it has important benefits that outweigh the cost as exemplified by the words of these participants from the focus groups.

With movement studies, it is often difficult to provide participants with their ideal exercise and social interactions. There were strong feelings on both sides between being assigned to the PRR or WALK group. For example, while many group members highlighted the role of exercise to prevent falls, a few expressed a fear of falling if they were placed in the PRR arm. Hearing from members of an often-overlooked research population about their hesitations, the study recruitment strategy was adapted to incorporate these concerns to allow for more comfort amongst participants for both arms of PARTNER. This strategy will lead to more generalizable findings. We seek to implement PARTNER with MULTI-ACT Guideline for Patient Engagement, which focuses on breaking down research boundaries by highlighting participant engagement, incorporating a diverse study population and translating findings to the community [56].

Importance of patient and community input

Patient centered care is vital to adequate health care. Gathering patient and community input into research methods and interpretation is an essential step toward a patient centered medical community [56]. Often the community stakeholders, especially from minority groups, are overlooked and thus have grown to mistrust or not incorporate research into their lives as they feel it does not represent them [54, 55]. Having community input before implementation of PARTNER ensures that the desires, concerns, and hesitations of community stakeholders will not be overlooked and will allow for study findings that can have a larger influence over these populations. With historic medical injustice, it is essential to engage and listen to disenfranchised populations to improve medical care and research for all.

Limitations

We acknowledge some important limitations. The small sample size limits generalizability for these findings. People who participate in research studies are often engaged and motivated and by virtue of their participation experiencing at least some social activity. Therefore, as is the case with all research participants, studying this population means that these findings are not generalizable to populations less socially active and motivated to participate in research. The groups were heavily populated by minority women allowing for an important and unique perspective, but an overall limited perspective. With few non-Black woman participants, it is difficult to compare the attitudes of Black women to White women or Black men without speculation. Future studies should include larger samples, including more non-African American minority individuals and more men. In addition, these focus groups took place in metropolitan Atlanta and holding focus groups in a variety of locations would allow for more geographic generalizability.

CONCLUSION

In this study, we observed these participants provide indicators that they had a general understanding of exercise as medicine for both physical and mental health, but also the hindrances and limitations that prevented people from engaging in physical activity. This discussion provided valuable insight into the understanding of how community members thought of motor-cognition, how it applies to their daily life and their thoughts on how exercise interacts with maintaining proper motor-cognitive integration. It also addresses reasons why community members did or did not exercise and the importance of exercise in people’s lives in an often overlooked and high-risk population in research, Black women. Additional research is needed to further explore the perceptions of exercise and its benefits in a larger population. Findings disseminated here provide important information that can help inform treatment for MCI, recruitment efforts for hard-to-reach research populations, along with providing valuable information for future studies to gain increased understanding of perceptions of movement, movement’s perceived impact on health and understanding the hesitations to exercise.