A qualitative study of music-based intervention use for Alzheimer's disease in elder care communities

Abstract

Background:

Because music-based interventions (MBIs) are not standard of care for Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD), it is likely that the application of them in different care communities differs widely. Additionally, there is no standardized use of personalized music listening and group music activities.

Objective:

The purpose of this pilot study was to assess the current use of music in long-term care communities, to identify trends and patterns of music use and record the perceived benefits that music use provides.

Methods:

This study utilized a qualitative research approach using semi-structured interviews with care community staff and care community observations to examine the role that music played as a therapeutic tool for individuals with AD/ADRD living in care communities.

Results:

Of the five communities visited, interviews were conducted at four communities. Two staff members were interviewed at each participating community resulting in eight total interviews. Both live and recorded music was used actively and passively and was perceived to stimulate memory, increase engagement, and energize or calm as needed.

Conclusions:

Elder care community staff are finding ways to integrate music because they believe it to be helpful. The adaptability of music for use in many situations is makes it useful throughout most of the day across a wide range staff duties and resident needs. The evidence for benefit of MBIs is growing, however, further investigation into MBI's in this setting is needed to develop guidelines for best practices incorporating music into elder care for people with dementia.

Keywords

Alzheimer's disease elder care community music music-based intervention

Introduction

Alzheimer's disease and related dementias (AD/ADRD) are associated with a constellation of symptoms that can negatively impact quality of life.^1–5 Beyond memory loss and cognitive difficulties, AD/ADRD can worsen emotional health, impair functional capacity for activities of daily living, and block communication ability leading to social isolation.^6–9 Music-based interventions (MBIs) are used to support social, emotional, and cognitive domains, with the goal of improving quality of life for people living with AD/ADRD and their families and caregivers.^10–17

Within the literature there is an existing gap which is the lack of music specific standards for AD/ADRD care.¹⁸ Compounded with this lack of standards there is also inconsistency in how music interventions are reported within the literature.¹⁹ Because MBIs are not standard of care for AD/ADRD, it is likely that the application of them in different care settings differs widely. Additionally, there is no standardized use of personalized music listening and group music activities. While music therapists might be a part of some care teams, this could be inconsistent and limited due to cost and availability, leaving activity directors or other members of the care team to provide any MBIs or activities.^20,21

Music may have benefits beyond simple entertainment value and these benefits would be difficult to quantify without knowing how much music is used in a community before an intervention is started. If this variability in music use is not known and accounted for then music interventions which are implemented would have inconsistent impacts, with residents of some communities benefitting more than others. The ambiguity caused by the potential variability in music use between care communities is something which needs to be clarified. This clarification can be accomplished by using qualitative semi-structured interviews with activity directors and music therapists and other care community staff. The purpose of this pilot study was to assess the current use of music in long-term care communities, to identify standard trends and patterns of music use and record the perceived benefits that music use provides.

Methods

Research design

This study utilized a deductive qualitative content analysis research approach with semi-structured interviews and community observations to examine how music was being used for individuals with AD/ADRD living in care communities.^22–25 By focusing on the staff directly providing care, these interviews could reveal hidden insights regarding social interactions and emotional states that could not have been otherwise uncovered.

Participants

The University of Kansas Medical Center Institutional Review Board (IRB STUDY00150618) provided ethical approval for this study. The study team obtained letters of permission from care community directors to visit five care communities in the metro area of a large Midwestern US city. During these visits, care community staff were invited to participate in the study. Participants were provided with sufficient information regarding the purpose of the study and their confidentiality was ensured. Informed consent was obtained from all the participants before their participation, and participants were compensated $25 for their time. Participants were selected based on their willingness to participate and their involvement in caring for residents with AD/ADRD. There were no strict inclusion or exclusion criteria. Participants were activity directors or other staff 18 years or older at long-term care communities caring for residents with dementia that were willing to be observed and participate in semi-structured interviews.

Study sites

Care communities surrounding a large Midwestern US city were selected as potential study sites using a resource called the Seniors Bluebook.²⁶ One hundred and ten sites which provided AD/ADRD care were selected and then categorized based on a set of predetermined demographic criteria: whether the site was in an urban or rural area, the number of residential units and capacity of each community, the type of living arrangements offered (assisted living, independent living, etc.), and whether the community was one independent location or had multiple communities at different locations. These criteria were selected to ensure the selected sites reflected a wide range of community, living styles, degree of organization, and staffing levels. Ten care communities were selected from this larger list. The goal of the selection process was to obtain a broad sample.

Data collection methods

Data collection consisted of semi-structured in-person interviews. During each interview, one researcher performed the role of “interviewer,” while a second researcher had the role of “recorder.” The interviewer went through a predetermined set of 20 questions to capture the participants’ view on music and how it affects residents with AD/ADRD (Supplemental Table 1). These 20 questions were the structured part of the interview and did not vary between interviews. Throughout the interview process, follow-up questions were used to clarify or request expansion for participants responses, allowing for more individuality and unique perceptions. These follow up questions represented the flexible part of the interview. The conducted interviews were audio- and video-recorded via an iPad and were transcribed to a Microsoft Word document and uploaded for analysis into the software Dedoose Version 9.2.4., a web-based software for managing and analyzing mixed methods research data.²⁷ Both the interviewer and recorder also took notes by hand during the interview process as a backup to the audio/video recordings.

Observations

Observations were conducted by the research team in each of the care communities. The care community staff provided a tour of the shared spaces. During this tour, the environment, music, setting, activities, and interactions of the individuals were noted and recorded on a paper notepad that was later transcribed into a Microsoft Word document. The research team also documented anything related to music such as the presence and use of instruments, smart speakers, special equipment, record players, etc. When available, artifacts such as daily activity calendars were also collected. These observations were uploaded into Dedoose and compared alongside the observations and staff interviews of other care communities within the area.

Data analysis

Data analysis and structuring for this paper were based on the “Standards for Reporting Qualitative Research” checklist, which was created by O’Brien and colleagues, the EQUATOR Network was used to identify the most appropriate checklist.^28,29 A completed checklist can be found in the supplemental information (Supplemental Table 2). Thematic analysis was used to analyze the data by identifying recurring themes that were identified in the text.²⁴ This analysis process included reading through the transcriptions and first finding broad categories that related to the research. Afterwards, sub-categories were derived from overarching ideas, then general themes were recorded based on what was discussed during the interviews.

The transcription process consisted of taking the recorded data from each interview and typing in a Word document alongside the audio file. Transcription was conducted by one research staff member (AZ), and questions were verified with a second who was present during the interview (BH). Ambiguous sections of the audio recordings were compared with written notes taken during the interview. Once the first transcription was finished, the audio was reviewed a second time as the document was proofread and any errors were corrected.

After this process, the transcript data were coded into categories and sub-categories using an open coding method within Dedoose as described in Qualitative Research and Evaluation Methods.²⁵ These codes were created based on concepts that were consistently brought up and mentioned across the eight different interviews. Coding was conducted by two members of the study team (AZ, BH). Connections between these different identified themes were identified and described. To ensure credibility, peer debriefing was conducted to develop a more well-rounded understanding of the content. To ensure data security, all data were stored on secure drives. Participant, resident and care community names were removed from transcriptions, and data access was limited to necessary study team members. To ensure data saturation, two authors independently analyzed the transcripts using qualitative content analysis to identify key themes.^22,23 When no additional themes were identified in subsequent interviews, the authors then compared results and reached a consensus on final themes.

Results

Site characteristics and interviewee demographics

Ten care communities were identified as meeting criteria for this study. After contacting the ten care communities, five care communities agreed to participate in the study and were visited in person by the study team for observation and staff interviews. The communities ranged from 15 rooms to 176 rooms. The levels of care offered by the communities varied, overall levels of care included assisted living, independent living, rehabilitation, skilled nursing, long term care and memory care. All the participating sites were based in and around a large Midwestern US city.

Of the five sites visited, interviews were conducted at four sites. One site did not participate in the interviews due to scheduling conflicts. Eight staff members, all of whom worked in direct contact with the residents, individually participated in a semi-structured interview, which resulted in a total of eight interviews. Participant roles ranged across administrative, care, and activities staff and included manager, director, coordinator and floor positions with some participants serving in multiple roles. A demographics summary is shown in Table 1. Interviews were conducted on site at each community in a private room with a closed door. The interviews lasted an average of 27 min and ranged from 18–41 min.

Table 1.

Interviewee demographics.

		n = 8 (%)
Certifications, training	Medical certifications	5 (62.5)
	Musical certifications	2 (25.0)
	Unknown	1 (12.5)
Years in work position	<1–10	4 (50.0)
	+10	2 (25.0)
	Unknown	2 (25.0)
Musical background	Yes	6 (75.0)
Musical background	No	2 (25.0)
Involved in activity planning	Yes	6 (75.0)
Involved in activity planning	No	2 (25.0)
Participates in activities	Yes	8 (100)
Participates in activities	No	-

Coding

The data were categorized into four main themes based on the predetermined interview questions: Music Use, Music Effect, Level of Involvement, and Music for Care. The findings showed different patterns in music influencing memory, mood, and the quality of care provided by the responses of each of the individuals interviewed. The most referenced benefit of music was mood effect, the most referenced delivery method was recorded music, and the most referenced activity type was passive listening (Figure 1). The codebook is included as Supplemental Table 3. Supporting quotes are numbered to differentiate between interviews.

Figure 1.

Number of participants reporting each theme.

Music use

The first theme that emerged was Music Use, which highlighted the interview sections related to the music type that was being played, the occasion it was used, and how it was used with the individuals. The analysis revealed four subcategories: Active Listening (1a), Passive Listening (1b), Type of Music (1c) and Frequency (1d).

Active Listening was frequently mentioned in the interviews when the caregivers described individuals actively engaging with the music through different musical sessions by singing along, answering questions about the songs, or using instruments to create music. In these sessions, the individuals in the care community were encouraged to participate. These sessions were often described as being helpful for promoting engagement and stimulating memory.

“this crowd really loves singing so if one starts humming a tune they'll all kind of just pick it up together and now they're singing the lyrics as much as they do remember”-R5

“some people do like to just sit and listen and sing along and […] just enjoy it other people do like […] shaking a tambourine or what have you and they get very serious about it”-R1

“she came and played and they sing along and sometimes […] she'll say what's your favorite song and ask them and […] they'll have a response they'll know their favorite song”-R2

Passive Listening referred to times when music was played in the background to create a calm environment without active music participation. Interviewees described music as being used passively at different times throughout the day to calm or engage. These times included meals, activities, daily routines, and rest.

“best practice we found for music in the dining room is that if you are in the middle of a meal we tend to use non lyrical instrumental music […] what we find is if I put on Patsy Cline sometimes that resident that maybe needs to focus in on what they're eating is going to be distracted by what Patsy's singing and so having something that kind of stimulates but isn't distracting that's there's a fine line there”-R4

“there's always music playing in the background during breakfast lunch dinner time”-R2

“there might be somebody who doesn't want to participate in […] an activity but we still want them to be present and […] be social and be engaged […] with music in the background […] oftentimes they end up just kind of being drawn into the activity and […] enjoying it just as much”-R1

Type of Music was further subdivided into: Live Music, Instruments, Piano Playing, Smart Speakers, and Recorded Music. Live music was very common, and musicians frequently came into the communities to play. Instruments were sometimes provided to residents who wanted to participate in the live music. Piano playing was regarded as being a therapeutic form of music that could help individuals with AD recall different memories. There was frequent usage of smart speakers, with each of the communities having a minimum of one smart speaker, while some communities had smart speakers in multiple rooms. These devices were used to play recorded music that appealed to each of the residents’ preferences and could be easily adjusted to each individual or group. Recorded music, which was often preferred music from an individual's past, was usually delivered using phones or smart speakers

“we also have someone come that passes out like the instruments that we had and they get them involved in doing music […] in the morning time”-R2

“for Alexa I'll go around and ask them “hey you know what's one of your favorite songs?” and then I've kind of like gathered […] what they like and play what's more appropriate for them”-R6

“the gentleman that comes with the guitar he comes […] twice a month”-R9

“…we have live music on a rotation of different performers every week, all of which touch back into a lot of that older music, most of them will sing along to it” -R5

“we have the Alexas in all of our neighborhoods here in memory support”-R5

“the way we involve them, […] she'll have somebody come and we just gather them” -R6

Frequency was created to note how much each of the care communities played music on an average day. Frequency was categorized into Time When Played which was further divided into Midday, Morning, and Night. Frequency varied depending on the location, average use was high according to the staff at the sites.

“Every day every hour every minute and somewhere around in this building if you walk around it you'll be hearing music”-R8

“I mean throughout the 24 hours of a day […] wow I haven't thought about it in that way I guess I would maybe average it out to be probably 40 to 60% of the day probably 50 cause […] you don't listen to it at night when you're sleeping”-R3

“… music's played quite a bit […] I should really think about like how much music is played here […] I would say probably […] you know 10 hours out of the day there is some form of music”-R1

“Daily, […] the Alexas alone almost never turn off they're on from the time they come in for breakfast in the morning till they go to bed at night.”-R5

“the minute I get here I have Alexa playing music and it pretty much goes […]all day and all evening”-R6

Music effect

The second theme, Music Effect, focused on the impact of music on memory restoration and mood alteration. It was divided into two subcategories Memory Restoration (2a) and Mood Effect (2b).

Memory Restoration was a frequently discussed subcategory of music effect. Participants often mentioned that the familiar music triggered the memory of past events and places. Different music from residents’ youth and significant life events stimulated memories and offered a sense of identity.

“… somebody remembers a song or somebody oh my brother loved that song and […] you know my brother loved Johnny Cash or my dad loved Johnny Cash so it just […] you know kind of takes on a life of its own”. -R1

“then it sparks it to them and they're singing the words and you know sometimes […] it brings us to tears because maybe they haven't even said a word or you haven't heard them say much in a long time but they're singing this whole song”-R9

“they don't […] remember what we did 5 minutes ago but that song comes flooding right back to em and they can sing all the words perfectly, so it's a great reminiscing aid”-R5

“I think it's very impactful because […] music is remembered even in the latest stages of Alzheimer's and even if you lose the ability to speak you still might be able to hum your favorite song”-R3

“you know we've even gone and done a nursery rhyme […] and what they start to think about either from them being a child or having children […] somebody always speaks out they're like oh I always sing this song to my kids and things like that”-R1

Mood Effect was also frequently discussed. Effects varied from music relaxing and calming the individuals to energizing and engaging them. Music was reported as having many positive influences on emotional wellbeing. Different interviewees observed that the music alleviated the symptoms of anxiety and allowed for a calm and relaxed environment.

“kind of relaxes them either puts em to sleep or just kind of slows em down, […] calms that anxiety down”-R9

“today we had two women starting to argue […] and so we turned on Sweet Caroline cause they love that song and so they […] instantly started singing and forgot that they were arguing. So […] I think […] it calms them down”-R6

“it can be used to be energizing and help bring people into a more positive mood and have more energy like when we do exercise and we use music in the background”-R3

“sometimes we’ll individualize and have them have their radio and place it right next to them which is a soothing calming thing for them as well”-R2

Level of involvement

The third theme Level of Involvement explored music interacting with activity planning and resident care methods. It was subdivided into Activity Involvement (3a) and General Care (3b).

Activity Involvement focused on music playing a role in activating the resident engagement in different activities. This was through musical games, dance, simple percussion instruments and other musical activities. This was further subcategorized into Musical Activity for activities that were specifically music focused and Non-Musical Activity for activities that were not music focused but were sometimes supplemented with music. Musical activity was considered effective in promoting physical and mental engagement amongst the individuals through instrument use and singing along. Participation or engagement was deemed essential for maintaining function and well-being.

“I always get good participation for music, music is something I can get more people out of their rooms for. Also, if they want to be a passive participant it's nice as well, cause they can just listen and enjoy and don't feel the need to have to participate in the group if they don't want to, just to hang out with us, I'll take it.” -R5

“we play music bingo we play […] musical chairs we play cakewalk which it has music you know we have cards playin’ we're we're playing cards and we have music in the background”-R8

“sometimes when we gather residents in memory care it's like herding cats because you bring them there and they leave as you're gathering more people but […] the music really helps because people are like “oh there's music and I know this song” […] and then it energizes the residents and keeps them moving throughout the exercise itself”-R3

“I was thinking you know even different people who come in and do therapies and stuff […] have started to use music as well with our residents so […] it's just a nice addition […] you can work out and exercise or you can beat a drum to fun music and call it a workout”-R1

General Care emphasized the role of music in overall caregiving. Many caregivers mentioned that music played a role in calming an individual. Many caregivers also mentioned various tasks that they performed to assist in the resident's overall day to day living that did not require any use of music and it was placed under this category.

“I get here, […] we get a report, I wake people up turn on lights, […] help em get dressed […] serve them their breakfast, their coffee, […] try to keep them occupied as much as possible with little things you know, if there's nothing major going on then I will print […] coloring papers off and so we'll sit around the table and we color, […] we'll have a group and we'll have coffee or tea or whatever and […] I'll get on my phone and look up what happened on this day in history, so we'll all talk about that, […] we've sat around and talked about the weirdest foods we've had and they really enjoyed talkin’ about that.”-R6

“You know I as soon as you come in […] you're talking to them getting them up like singing […] in the morning to get em in a better mood to wake em up you know different things like that helping them brush their teeth and comb their hair and hey let's read this book or you know I think that's probably 90% of all of my job here at ***** no matter what position that you have here you are actively engaging with the residents the whole time you're here so you may have a little break to eat a sandwich […] but you're actively engaged with the residents here”-R2

Music for care

The fourth theme Music for Care regarded aspects of care that affected the overall quality of individual lives. They encompassed the impact of music on individuals’ wellbeing and improving the emotional, psychological, and social states of life for individuals with AD. Caregivers described the music as providing significant benefit to the daily lives of individuals, as well as being easy to access. The consistent exposure to music contributed to a more positive and stable environment.

“Music is […] a very easy thing to do it doesn't cost any money especially now with all the streaming and […] it's an easy thing to do that definitely has brought lots of really positive results for us”-R1

“Activities provides this outlet where people can come in and they're not worried about […] taking medications they're not […] having wound care done they are focused and they […] have a chance to focus on themselves and say I'm gonna do exercise because that's something that I do for self-care or […] we're gonna go play trivia or we have a storyteller that's coming in I love Johnny Cash he's gonna talk about Johnny Cash and for a minute there we're not worried about where we are or who we’re around or where our family is we have a chance to kind of just be ourselves in that moment and I think that is a an incredibly important part of not just rehab but personal mental health and wellness”-R4

“we do live entertainment a couple times a week as more of a social experience we've experimented with a choir here to have that experience of singing as a group together […] and also to help with the diaphragmatic breathing for the rehab residents or some of the long term care residents who just need that support with their breathing overall and also with residents with Parkinson's”-R3

Observations

Observations were also completed at all five care communities. Four communities had music activities occurring during our observation, three of these were live music performances and one was resident created music. The three live performers played guitar and sang. All four music activities included resident participation through sing-alongs or question-and-answer. Two of these activities provided instruments for resident participation. The music genres played during the observed activities included nursery rhymes, rock & roll, country music, folk, and songs from movies and television shows familiar to the residents. Four communities had background music playing in various spaces throughout the community during observations. Also observed were music instruments and private listening stations with record libraries available to residents.

Discussion

Several recurring themes emerged throughout the interviews. Music was seen as easy to use through phones and smart speakers which allows it to be used by all staff and by residents themselves. The ease of access to music, provided through smartphones and tablets, makes it an effective tool for staff in a variety of positions even if they are not an activity coordinator or a music interventionist. Music was seen to play a role in mood regulation for residents of the care communities living with Alzheimer's disease. Caregivers used music to reduce stress and bring joy, lifting spirits and providing comfort to the residents. Music was believed by staff to cause positive responses in typically unresponsive residents, and promote memory recall and sense of self, it also was believed to lessen anxiety. Other recent studies have also found related benefits of music use including reduced agitation, fewer negative emotions and improved mood.^30–35 Interviewees also described it as facilitating a better caregiving process and aiding in emotional support for care community members. Caregivers believed they could stimulate memory, positive mood, and foster wellbeing by using music. This supports findings from multiple studies that have also concluded that music use can improve quality of life and reduce depression.^36–39

In both interviewee responses and our observations, music appeared to be beneficial both as the primary focus and as a supplement to other non-musical activities. Engagement in non-musical activities, such as exercise or physical rehabilitation, was reported by staff to be improved through the inclusion of music. This improvement seems to indicate that even when the music itself is not the focus of an activity, it can improve the appeal and the success of an activity by increasing participation and engagement. This fits with other studies that have also found that the addition of music to exercise and physical rehabilitation can contribute to greater benefits from these activities.^40,41 Interviewees reported that they used music with residents to calm as well as engage and that it was used both passively and actively. The variety of music use reported suggests that interviewees believed that music played a useful role in the care of individuals with AD/ADRD throughout each day. Other researchers have reported that both active and receptive music interventions can improve AD symptoms.⁴²

Some limitations to this study were a small sample size and all care communities being in the same geographic region of the Midwestern United States. There was also selection bias since all communities that agreed to participate used music as a part of their care community. Future research with a larger sample size and a wider range of locations would be needed to verify the results of this study. Additionally, research on the effectiveness of specific MBIs will help to define evidence-based best practices and guidelines for the use of music in elder care communities.

Music was generally viewed as beneficial by all the interviewed participants, although usage varied between care communities and ranged from generalized music listening to more structured music-based interventions. This seems to indicate that, regardless of the level of focused musical activity, music was seen to improve quality of life for residents with AD/ADRD. Even within each individual community, music was incorporated with various levels of focus, sometimes functioning as a background mood enhancer and sometimes as the primary focus of a sing-along or musical event. The staff perception of beneficial mood effects of music use, as well as delivery methods such as sing along sessions and recorded music played through speakers are similar to findings from other care community studies.^20,21,43,44 Two of these studies used survey methods similar to ours and collected data through in-person interviews, while the other two used surveys which were completed independently by participants. Only one of the studies conducted an observation. The small number of music related studies which conducted staff interviews or surveys at care communities suggests that this method of data collection is not widely used in this context. Staff perspectives are valuable because staff members are experiencing how music is being used in their community daily and potentially implementing music use on their own. Gathering and including staff members knowledge of the unique music environment of their care community could help create a more rigorous and effective study design by highlighting how music is already used and what effects it may have. While this knowledge can be gathered through an independently completed survey, our use of an in-person interview and community tour provided the opportunity for clarification of survey questions to participants as well as the use of follow up questions to collect more detailed data if needed. It also allowed our study team to make a connection with interested staff which could lead to future collaborative investigations. Our team gained a personal experience of how music was being used which could be combined with the experiences of the interviewees. All these connections and experiences will help our team when designing and implementing future music intervention studies. The clinical relevance of these results is that staff are finding ways to integrate music because they see it as helpful, therefore further investigation into MBI's in this setting is required and guidelines for best practices incorporating music into elder care communities for people with dementia need to be developed.

Conclusion

Given the positive effects that staff perceived music to provide and the ease with which it can be used, further investigation should be done to better understand the neural and emotional mechanisms which drive these effects in individuals with AD/ADRD. The adaptability of music for use in many situations makes it useful throughout most of the day across a wide range staff duties and resident needs. The clinical relevance of these results is that elder care community staff are finding ways to integrate music because they believe it to be helpful. The evidence for benefit of MBIs is growing, however, further investigation into MBI's in this setting is needed to develop guidelines for best practices incorporating music into elder care for people with dementia. Developing a list of standard AD/ADRD MBI recommendations and procedures based on current research and distributing it to care communities could help establish a more consistent use of structured MBI's across communities. Once standardization was established, personalization of the standard MBI's could be developed by collaborations between researchers and care communities. As stated in a quote from one of the interviewees, regarding the effect of music on individuals in general, “I just think music it's very vital in life for everybody” -R2.

Supplemental Material

sj-docx-1-alr-10.1177_25424823251363488 - Supplemental material for A qualitative study of music-based intervention use for Alzheimer's disease in elder care communities

Supplemental material, sj-docx-1-alr-10.1177_25424823251363488 for A qualitative study of music-based intervention use for Alzheimer's disease in elder care communities by Benjamin J Hess, Ava Zatloukal, Jasmine M Taylor, Michelle Neidens, Kristine N Williams and Rebecca J Lepping in Journal of Alzheimer's Disease Reports

Footnotes

Acknowledgements

We thank the staff and care community members who have shared their knowledge and enthusiasm for music as a support for people living with dementia.

ORCID iDs

Benjamin J Hess

Jasmine M Taylor

Michelle Neidens

Kristine N Williams

Rebecca J Lepping

Ethical considerations

Ethical approval for this study was obtained from the KUMC Institutional Review Board (STUDY_00150618). Participants were provided with sufficient information regarding the purpose of the study and their confidentiality was ensured. All data were stored securely in databases following ethical guidelines.

Consent to participate

Written informed consent was obtained from all the participants before their participation.

Author contributions

Benjamin J Hess: Data curation; Formal analysis; Writing – original draft.

Ava Zatloukal: Data curation; Formal analysis; Writing – original draft.

Jasmine M Taylor: Investigation; Writing – review & editing.

Michelle Neidens: Conceptualization; Resources; Writing – review & editing.

Kristine N Williams: Resources; Supervision; Writing – review & editing.

Rebecca J Lepping: Conceptualization; Formal analysis; Investigation; Project administration; Supervision; Writing – original draft; Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under the Award Number UL1TR002366 to Rebecca Lepping; with additional support from the University of Kansas Alzheimer's Disease Research Center NIH grant P30AG072973, through the National Institute on Aging. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Data are available from the corresponding author upon reasonable request.

Supplemental material

Supplemental material for this article is available online.

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