Alzheimer disease (AD) is a neurodegenerative brain disease characterized by plaques and tangles with clinical deficits in memory, language, and problem solving that interferes with daily activities.1–3 Estimates suggest that 5.7 million Americans are living with AD and that the number of individuals in the United States living with AD may nearly triple by 2050, absent significant breakthroughs in ways to prevent or cure the disease.2,4 AD is currently the sixth leading cause of death in the United States and is one of the costliest chronic diseases to society.5,6 In addition to the economic costs to society and to families, caregiving for a loved one with AD can be emotionally taxing and immensely time consuming.2
Current evidence suggests that African Americans are ~2 times more likely than white Americans to have AD and other dementias.2 Despite this higher prevalence, African Americans are less likely to enroll in AD clinical trials than white individuals.7 In addition to lower rates of research participation, African Americans also experience delays in AD diagnosis and treatment, representing missed opportunities to extend quality of life.2 A reluctance and perceived futility of discussing brain health may contribute to these delays.8,9 This reluctance may stem from viewing memory loss as a normal part of aging, fear of stigma, and distrust of the medical providers, and the health care system overall.10–12
A key step toward potentially preventing AD among African Americans is to better understand how African Americans think about brain health and their ability to influence it. Accordingly, the purpose of this study was to use a photovoice approach to better understand how African Americans conceptualize healthy brain aging and their ability to influence their own brain health.
Photovoice is a community-based participatory action research methodology that allows individuals to share their perceptions and lived experiences through photography and narration to gain a more detailed understanding of an issue and to raise awareness.13 This method focuses on real participant experiences rather than the constraints of researchers’ expectations.14 Although interviews and focus groups can provide valuable information, images can help individuals reflect and consider their own personal, social, and environmental contexts in a way that words alone cannot.14–16 The ability to visualize concepts leads to enhanced dialogue and reflection, and images can help participants remember details they wish to discuss that might otherwise be forgotten, and promote communication on topics that are more difficult to articulate.17 The critical thinking involved in processing both visual and verbal information also can promote enhanced understanding and new ways of conceptualizing issues. In addition, by sharing in a group setting, participants can use images to challenge each other’s interpretations of reality and promote even greater reflection.18
Through the center’s existing African American Dementia Outreach Partnership (AADOP), 3 African American community advocates were identified to serve as photovoice facilitators. The lead research made a brief presentation at an existing AADOP meeting regarding the project, its goals, and the role of the facilitator. A follow-up email was also sent to reiterate this information and ask for volunteers to serve in the role of facilitator. Interested individuals met with the lead researcher to discuss the project in further depth and were invited to attend the facilitator training.
Facilitator training involved two 1.5-hour long sessions that included a tailored human subjects’ protection training course and an overview of the photovoice process. All facilitators were provided with a handbook, developed by one of the investigators, on photovoice techniques and procedures to assist them throughout the project. Each facilitator assisted in the identification of potential African American group participants and led the photovoice group process.
Each facilitator took a different approach to recruiting group participants. The first facilitator drew on personal contacts to form her group. The second facilitator led a chronic pain support group and incorporated the photovoice project into regularly occurring meetings for those who were interested. The final group was facilitated by an African American staff member who was involved with AADOP. Her group incorporated several African American individuals who had previously expressed some interest or willingness for further engagement, including 1 woman who had considered facilitating a group herself but had not wanted that significant a commitment. Facilitators had regular check-ins with the lead researcher that involved sharing impressions on the process and findings, troubleshooting of any challenges, and reminders and suggestions for upcoming sessions. In-person support was provided as needed.
Photovoice Group Process
Before engaging in the research, all participants signed an informed consent document. The group process consisted of 8 to 10 sessions involving a series of prompts related to brain health that participants were asked to reflect on and capture images that resonated with them. These images and thoughts were then brought back to the group and shared to promote discussion. At the beginning of the project, participants were given a brief overview of camera operation and confidentiality concerns for taking photographs within the community. Photovoice group participants completed a brief survey that included basic demographic information.
All sessions were audiotaped, and transcribed verbatim and photographs were uploaded. Sessions were held at the location of the facilitators choosing (eg, their home, the library, a community center, or the conference room at the research center). All participants were given a digital camera and light snacks were supplied, but no other incentives were provided. Eligibility for participation involved being an African American adult who was either older themselves (age 65+) or who was involved in health care discussions or decisions for an older adult. All procedures were approved by the University Institutional Review Board.
All transcripts were coded line by line and codes were grouped conceptually to identify themes. The resulting themes were shared with the photovoice groups during their final sessions as a member-checking process to confirm that the identified themes and keys ideas resonate with the participants, and that important aspects of the discussion were not overlooked.
Across the 3 groups, a total of 21 African American community members participated. Participants ranged in age from 35 to 86, with a mean age of 63.71, and were predominantly female individuals (Table 1). In total, 12 of the participants were aged 65 years or older, 5 were between the ages of 61 and 64, and 4 were under the age of 60 (ages 35, 42, 45, and 57 y).
Several of the groups had attendees in the sessions who either provided support to the facilitator or were interested in the process, but did not enroll in the study. For group 1, 2 staff members attended various sessions to support the facilitator; 1 staff member attended 3 sessions and the other 8 sessions. In addition, there were 2 community members who observed a single session but chose not to enroll. For group 2, there were 20 community members who observed between 1 and 6 sessions but chose not to enroll and fully participate. Group 3 was facilitated by an African American staff member who was present for 8 sessions. Two additional staff member joined various sessions: 1 staff member joined 6 sessions and the other joined 4 sessions.
Perceptions and Influences of Brain Health
A number of participants expressed that the challenge for many African Americans in relation to focusing on brain health is that life circumstances require a greater focus on general survival. One participant indicated, “A great percentage of us wake up every morning and just try to survive … To maintain brain health is far from our daily thought.” Another participant indicated, “Our truth is survival, not based on how important brain health is to survive.” This discussion regarding a focus on survival and making ends meet emphasized the importance of figuring out how to get people to connect brain and body, and recognize the need to take care of the brain because, as 1 research participant said, “Without our brain, we are nothing.”
Participants in this study were able to move beyond survival and highlighted that brain health can exist regardless of socioeconomic status, that as long as you are satisfied with life, you can have brain health, that, “everyone is a good candidate for brain health.” Participants shared their perspective that brain health is diverse. One participant indicated, “Brain health is such a wide spectrum, not just A, B, C, D.”
Although brain health and its influences were originally conceptualized as 2 distinct concepts, participants in this project viewed the 2 as highly intertwined. The factors that promoted brain health also frequently reflected brain health. For instance, being mentally and socially engaged was viewed as promoting brain health, but the ability to participate in these activities also reflected brain health. Accordingly, this section will discuss both perceptions and influences of brain health. These fell into 2 main categories: lifestyle factors, and nature, resiliency, and positivity.
The importance of lifestyle factors and healthy choices for promoting brain health were frequently discussed. Lifestyle factors included: physical activity, diet, mental stimulation, and socialization. Regarding exercise and physical activity, 1 participant shared, exercise “helps get the blood flowing to the brain.” Regarding diet, participants took several photographs of fruits and vegetables, and shared beliefs about home-made and home-grown foods contributing to longevity in prior generations within their families. Referencing a photograph of a fruit bowl, 1 participant commented, “Fruit represents health to me. So that’s why I took that. It leads to not only brain health but every other kind of health, I suppose.” Regarding mental stimulation, 1 participant shared a photograph of a crossword puzzle focused on cognitive challenges and another indicated, “It’s always learning and being able to function in whatever situation you’re in.” Creativity was viewed as a form of mental stimulation and a way of promoting and reflecting brain health, including music, poetry, drawing, and painting. In addition, ongoing knowledge acquisition was seen as an important area of mental stimulation as well, “We are like walking computers, if we don’t put information into our brain, it becomes void and useless to us and others” and conversely, “Brain is only healthy by the info it’s given.”
Social engagement and connections were viewed as important aspects of healthy brain aging. Participants highlighted the importance of being “a part of social groups” and interacting with others in the world around you, whether it be at church, concerts, grocery stores, or just “interact[ing] with anyone willing to listen to you in a friendly way.” Others focused on volunteering as an opportunity for both social engagement and a way to feel productive, both of which were viewed as good for brain health, “Being productive is so important to healthy aging, still being productive in later years.” Others focused on the importance of continuing to find ways to contribute and continuing to value older adults and their contributions. Several participants discussed continued work engagement in regards to staying active and promoting brain health. One participant suggested, “I think when people are working, they have a healthy brain.” Another suggested work “provides stimulus for my brain and added physical therapy for my body.” Other participants recognized activity does not have to come from work itself, “you don’t literally have to be working, but as long as you’re moving, doing something. Because I don’t work anymore, but I’m still active and you are too.”
Participants discussed brain health being reflected by and promoted by continued activity outside of the work setting. One participant took a photograph of an airport and indicated:
There was a lot of activity. People were clearly going places! When I think about aging, I think about there being opportunity to do so many things. What you want to do, where you want to do it and whenever you’d like (Fig. 1).
This reflected a positive view of aging and in the discussion, this ability to keep moving and staying active was viewed as evidence of brain health. Another participant discussed the importance of staying active:
You are continuing learning, open-minded, and you observe things, the past and the present and what the future might be. And you have to be a self-motivator, whatever that might be- reading a magazine, watching a TV program, talking to a friend and that makes a big difference in how you feel. I never worry about yesterday if I can help it, however it does creep in as you get older because your friends die and go away and if you haven’t taken the time to make new friends, you are left like an island so that’s why you have to keep moving, keep getting involved.
Involvement with children was a form of involvement that participants frequently discussed as being especially important for promoting brain health. One participant indicated children, “are like sponges. They can catch on to something quick, so if you interact with them and ask them questions- you’ll be surprised what you learn.” Another indicated, “Being involved with children helps you too, keeps you on your toes.” and, “young people help energize me.”
Related to the benefits of being involved with children, participants frequently discussed an awareness of life course influences on brain health and the importance of taking care of oneself, and how activity in younger years is important for aging well. One participant shared, “Gaining brain health starts in the mother’s womb. In order for it to develop we must be introduced to books and reading at an early age and this must remain constant throughout our lives.” Another participant suggested that health for the older citizen “should be from the cradle to the grave.” Recognizing the importance of life course influences on brain health, participants suggested that “Retaining this kind of information [importance of brain health] should be taught in preschool, or at home.”
Many acknowledged generational differences where past generations may have had healthier lifestyle habits that promoted brain health. One participant shared:
I’m convinced- my daddy lived to be 93 and it was because of his good work ethic. When he retired until he had his stroke he would plant a garden, slaughter hogs, cure country hams, make sausages. Can. He would make us pick green beans. Tomatoes and stuff. I’m convinced that’s why he lived.
Another shared her insights into lifestyle factors that may help explain why past generations may have experienced more brain health:
I think they didn’t spend as much time sitting down watching TV. They were more active and I think the fact that they were outdoors doing things … I think being active, and they were—really active. It seems like almost from sun up to sun down, I think that helped keep them healthy.
Nature and Positivity
Across groups, participants frequently drew a connection between nature and brain health. Various elements of nature, especially trees, were reference as ways to view and think about brain health. For instance, 1 participant discussed her photograph that depicted a full and thriving tree in the center with trees without leaves on either side:
What you’re seeing there is a tree that has full foliage and even though that might not show it, the leaves have turned and you’re seeing something else there—you’re seeing some dead trees on each side. And the reason I took that was to show that even in our advanced years- that’s an old tree there- we can be productive. We don’t have to lose our mind or ability to do things. We don’t have to cease from our activities and the trees that are on each side have done just the opposite. In that sense, I’m thinking of brain health (Fig. 2).
In her perspective, brain health during later years is analogous to certain trees in autumn, their leaves changing to bright shades of red, orange, and yellow, yet the tree retaining its full foliage. Other trees, again like brain health and aging, lose their leaves at the first sign of autumn weather with its cooler temperature, rain, and strong winds. Like the full foliage trees, healthy aging is possible and by staying active in one’s later years one could continue to keep their mind healthy and be productive.
Others, drawing on this parallel between brain aging and nature, discussed the need to take care of the brain much like you would a plant, providing nutrients and sunlight. Nourishing the brain involved finding ways to relax, recharge, and focus on oneself. For instance, 1 participant discussed, “Like any other kind of health, good and poor, brains get tired too, need time to rest your brain, need to figure out how to cut it off from things that deplete energy of your brain.” Unfortunately, for many, current events and the political climate were viewed as negative influences on brain health. “News is wearing on your brain. Push it away and let the Lord handle it, but you don’t want to ignore it. You should be enraged by it, think about how it [anger] can affect your brain.” This participant discussed the need to be aware of how anger can deplete the brain. Discussions also involved how discrimination and concerns about fitting into society can create stress which can negatively impact brain health. One participant shared a strategy for helping clear the mind of some of these stressors:
I learned this mental trick in a high school psychology class, think of your brain as a big blackboard and when you start to get tired and to lose it, get out the wet cloth and erase everything off and pretend that it’s blank. Then you can start out with “this is what I want to do.”
Related to this need to nourish the brain and recharge was the importance of focusing on the positive and seeing the good ahead. One participant shared her thoughts on the importance of positivity:
One of the things that sustains us is to keep being positive about the future. If you isolate yourself or if you let that [negativity] creep in your life, you are stagnant. You’ve become a swamp- stagnant water just sits there and the most undesirable creatures live in it.
Another indicated, “It’s the good stuff you have to seek because the bad stuff is waiting around the corner.” Another participant shared, “If you retain the good stuff it’ll sustain you; whereas the bad stuff, if you just let it roll off, you’ll be fine.” Another participant discussed how if you have something to look forward to every day, then you are okay.
The diversity of lifestyle factors that participants identified as both ways to promote brain health and as signs of brain health directly, suggests that just as brain health is not a one-size-fits-all concept, the influencers of brain health can also be quite varied. Participants discussed diet, physical activity, mental stimulation and creativity, social engagement and volunteering, continued activity, and involvement with children as key activities for brain health. Although many of these are common in the literature, for example, diet and physical,19 others such as involvement with children and creativity, are less frequently discussed—but may still represent important elements and new targets for obtaining and maintaining brain health. Participants also saw the importance of sharing brain health information and starting brain health practices at a young age.
The connections between brain health and nature were unanticipated, but helped provide images and insights into brain health and the need to nurture it. The importance of relaxing, recharging, and seeing the good ahead were also seen as important skills for brain health. Learning how to respond to life’s stressors and not be depleted by them were essential for brain health.
The findings regarding the focus on survival highlight the importance of considering social determinants of health and disease when focusing on brain health.20 Although various frameworks exist, the common theme is that socioeconomic conditions, such as poverty, need to be addressed before being able to tackle issues surrounding brain health. In other words, simply knowing the importance of brain health and strategies to promote it is not sufficient unless basic needs are also being met. In addition, structural racism and discrimination negatively impact overall health and brain health.21 Improving social determinants of health will require multifaceted societal efforts and ongoing initiatives to identify and address unmet needs.22,23
Although this study was limited by a small sample size and insights may not generalize to all African Americans, these emic perceptions into brain health provide important insights that may facilitate messaging strategies to promote brain health within the African American population. It is also possible that the range of topics was limited by group-think within the open forum discussions in which some important features of brain health and its influencers may not have been discussed if they were not perceived to potentially be of general group interest. Although such considerations are important to recognize, the group facilitators exerted focused effort to make sure all opinions were elicited and that all participants engaged fully in the exercise.
Although there are limitations in any strategy to elicit opinions and insights, the photovoice strategy seemed remarkably effective in stimulating conversation and introducing topics and areas of concern or interest that were not envisioned originally by the study team. The images and strategies for brain health identified in this study could serve as key foci for messaging efforts in the African American community to help engagement in discussions of brain health, find novel ways to promote brain health, increase willingness to acknowledge when medical attention in relation to brain health may be warranted, and quite possibly help in efforts to engage a more representative population in research in the area of aging and Alzheimer prevention. These efforts can also be extended to other forms of dementia, as vascular and mixed vascular-AD may be more prevalent among the African Americans than AD alone.24
The authors thank all of the participants and facilitators who gave generously of their time to participate in this project. The authors also thank Dr Shannon Bell who shared her expertise and experience with the photovoice proces.
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