Funding bodies are placing increased emphasis on patient and public involvement in research, but the research priorities of individuals and caregivers living with dementia with Lewy bodies (DLB) are unknown.
Investigators conducted telephone interviews with individuals living with DLB and caregivers. Participants were recruited from a Lewy Body Dementia Association Research Center of Excellence. Interviews employed a semi-structured questionnaire querying research needs in different categories and then asking participants to select their top priorities. Investigators used a qualitative descriptive approach to analyze transcripts and identify themes.
Twenty individuals with DLB and 25 caregivers participated. Seventeen from each group participated as part of a patient-caregiver dyad. Twenty-three of the caregivers were spouses, two were daughters. Individuals with DLB and caregivers identified research needs relating to focusing on awareness, determining the cause of DLB, improving diagnosis, and investigating what to expect/disease stages. Participants also highlighted DLB symptoms needing additional research, therapies to prevent, cure, or slow the progression of DLB, and research targeting daily function and quality of life, caregiving, and improving education.
These findings support the research priorities defined in the National Institutes of Health dementia care summits in addition to ADRD priority-setting summits. Research is needed across all domains of DLB. Funding should be informed by the priorities of all relevant stakeholders and support research investigating causes, natural history, biomarkers, and treatment in addition to research targeting themes regarding living with disease (e.g. independence, quality of life, caregiving, and education).
Citation: Armstrong MJ, Gamez N, Alliance S, Majid T, Taylor A, Kurasz AM, et al. (2020) Research priorities of caregivers and individuals with dementia with Lewy bodies: An interview study. PLoS ONE 15(10): e0239279. https://doi.org/10.1371/journal.pone.0239279
Editor: Stephen D. Ginsberg, Nathan S Kline Institute, UNITED STATES
Received: June 15, 2020; Accepted: September 2, 2020; Published: October 7, 2020
Copyright: © 2020 Armstrong et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All relevant data (e.g. coding tree, exemplar quotes) are within the manuscript and its Supporting Information files.
Funding: This work was supported in part by the Agency for Healthcare Research and Quality (AHRQ K08HS24159, PI: MJA) and the National Institute on Aging (NIA AG047266, PI: T. Golde). Lewy body dementia research at the University of Florida is supported by the University of Florida Dorothy Mangurian Headquarters for Lewy Body Dementia and the Raymond E. Kassar Research Fund for Lewy Body Dementia. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: MJA receives research support from ARHQ (K08HS24159), a 1Florida ADRC pilot grant (AG047266), the Florida Department of Health Ed & Ethel Moore research program, and as the local PI of a Lewy Body Dementia Association Research Center of Excellence. AT is employed by the Lewy Body Dementia Association. BP receives research support from an American Academy of Neurology Clinical Research Training Scholarship in Lewy Body Dementia and received compensation for consultation with Medtronic. GS receives research support from the 1Florida ADRC (AG047266) and the Florida Department of Health Ed & Ethel Moore research program. NG, SA, TM, and AMK have no competing interests to report. This does not alter our adherence to PLOS ONE policies on sharing data and materials.
Funding bodies including the National Institutes of Health (NIH) are placing increased emphasis on patient and public involvement in research. Patients can have a role throughout the research process, from study design to dissemination [1, 2]. Before studies are even initiated, patients, caregivers, and the public have a role in identifying research priorities . This is critical given a mismatch between the research priorities of patients, caregivers, clinicians, and researchers .
The Advisory Council on Alzheimer’s Research, Care and Services recommends that all funders “should establish the engagement of the AD/ADRD [Alzheimer disease/ Alzheimer-disease related dementia] community as a standard practice in… participating in setting national research priorities for AD/ADRD…” . The NIH has adopted multiple strategies to increase the role of patient and public involvement in dementia priority setting. ADRD national research priority summits include sessions led by nongovernmental organizations to increase non-expert stakeholder input and public-private partnerships . The 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers included “persons living with dementia” and family caregiver stakeholder groups as two of the six stakeholder groups informing summit planning and recommendations . One aim of the planned 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers was to develop recommendations for research priorities to inform federal agencies and other research funders, but the in-person meeting was cancelled due to the global COVID-19 pandemic. The summit will now occur via a series of virtual meetings in summer 2020.
Involvement of patient representatives alongside experts in priority setting reflects a “participation” engagement strategy. Through participation, representatives have an active and equal voice in the process. Participation strategies usually rely on small numbers of representatives, potentially missing other perspectives. Consultation strategies (e.g. surveys, interviews, focus groups) collect a variety of views from larger groups of people, but fail to give patient representatives an active voice in the process. Employing participation and consultation approaches as complementary may be the optimal approach to incorporate the views of a diverse group while also giving patient representatives an equal and active voice in decision making .
Stakeholders representing individuals with Lewy body dementia participated in NIH AD/ADRD priority setting  and the 2017 care summit . However, no prior research investigates the research priorities of individuals and caregivers living with dementia with Lewy bodies (DLB). DLB is a subset of Lewy body dementia, the 2nd most common neurodegenerative dementia in the United States . DLB is a dementia with clinical and pathological overlap with Parkinson disease (PD) and both fall in the pathological category of Lewy body diseases. However, DLB has important differences from both PD and AD/other dementias which could meaningfully impact research priorities. For example, symptoms such as cognitive fluctuations, hallucinations, and dream enactment behavior distinguish individuals with DLB from AD . Individuals with clinically-diagnosed DLB survive a median of 3–4 years after presentation [10–12], shorter than individuals with PD [13, 14] or AD dementia [11, 15]. Caregiver burden in DLB may be similar to PD dementia , but it is higher in DLB compared to AD dementia [17–19]. Quality of life is also worse in DLB compared to AD dementia [20, 21]. Given these and other important differences between DLB and other dementias and parkinsonisms, prior publications reporting on research priorities in PD [22, 23] and dementia in general [24–27] may not capture the priorities of individuals with DLB. We thus aimed to identify the research priorities of individuals with DLB and caregivers, particularly to guide research at our center.
The study used telephone interviews to investigate the research priorities of individuals living with DLB and caregivers of individuals living with DLB. Investigators used a qualitative descriptive approach  to analyze interview transcripts. A qualitative descriptive approach involves reporting and summarizing straightforward accounts of participants’ views without an intent to generate or test theory. A qualitative descriptive approach was employed given the aim of identifying research priorities, rather than investigating theories underpinning those priorities. Consolidated criteria for reporting qualitative research guided study reporting (S1 Checklist) .
Population and recruitment
Individuals with DLB and caregivers of individuals with DLB were recruited from the UF Health Norman Fixel Institute for Neurological Diseases, a Lewy Body Dementia Association Research Center of Excellence. Inclusion criteria were: (1) patient or caregiver of a patient followed at the Fixel Institute, (2) personal diagnosis of DLB  or caregiver for an individual diagnosed with DLB, (3) if a person with DLB, clinician-judged mild-moderate severity such that the individual could understand the study and provide personal opinions, and (4) willingness to participate in a telephone interview. Individuals and caregivers were not required to participate as a dyad. Participants were recruited when presenting for routine clinical visits or through a consent-to-contact research database at the institute. The University of Florida institutional review board provided approval (IRB201500996). The study used a waiver of documentation of informed consent.
Data collection and analysis
The PI (MJA), a DLB specialist, drafted the semi-structured interview guide (S1 File) and revised it based on suggestions from a neuropsychologist (GS), a dementia specialist (not further involved in the project), PhD specializing in qualitative research (TM), and former caregiver of an individual with DLB (AT). The interview included questions regarding clinical care priorities, which will be analyzed separately. Research questions asked about participant priorities for DLB research in general and then specifically queried participant priorities regarding research on DLB symptoms, daily challenges, caregiving/family life, and diagnosis. Finally, the interview guide asked the participant to identify how they would divide $1000 to spend on DLB research and to prioritize what research was most important to them.
A research assistant with qualitative research experience conducted the telephone interviews (SA). The research assistant had no relationship with participants prior to the study. Interviews occurred via telephone to allow individuals to participate from home. Participants selected the interview times. The preferred approach was to interview individuals with DLB and their caregivers separately (if both participated), but the interviewer accommodated requests for the caregiver to be present during the patient interview. Any caregiver opinions offered during a patient interview were coded as belonging to the caregiver, not the individual with DLB. Audio recording started after allowing for participant questions and verbal consent at the beginning of the call. A professional service transcribed the interviews verbatim, so member checking was not performed.
Investigators used tables in Microsoft Word® and Excel 2016® to organize data and a qualitative descriptive approach to identify and organize themes . Broad topics/categories were defined by interview questions, but themes were identified from interview transcripts. The PI and two research assistants independently analyzed interview transcripts to create a codebook and then reached consensus regarding emerging themes (open coding). The research assistants analyzed remaining transcripts using a constant comparative technique, revising themes and subthemes with the PI if needed (axial coding) (S2 File). Coders assessed saturation during analysis. Co-investigators gave feedback after the initial coding. Participants were numbered in the analysis such that participants who enrolled in the study as a dyad shared participant numbers (with “P” indicating patient participants and “CG” indicating caregiver participants).
Demographic and interview characteristics
Interviews occurred between 1/22/2018 and 5/6/2019. Twenty individuals with DLB and 25 caregivers participated (Table 1). Seventeen from each group participated as part of a patient-caregiver dyad. Of the 23 participating spouses, 20 were wives. Both participating children were daughters.
Average interview duration was 28:11 minutes for individuals with DLB and 37:10 minutes for caregivers. Caregivers helped individuals with DLB participate in two interviews. Participants confirmed that all aspects of DLB need research. Specific categories of research included focusing on awareness, determining the cause, improving diagnosis, investigating what to expect (i.e. natural history) and disease stages, DLB symptoms needing additional research, the need for therapies to prevent, cure, or slow DLB, daily function, daily life, and quality of life, caregiving, and improving education (Fig 1). Exemplar quotes supporting these themes are provided below.
Key research-related themes identified in interviews with individuals with dementia with Lewy bodies and caregivers are presented in the top row of boxes. Key subthemes relating to identified themes are presented underneath the relevant research themes.
Focusing on awareness
Multiple caregivers described a desire to see research focus more on increasing awareness of DLB:
So research I think could focus more on awareness… give it the same attention or least some of the attention that they do other areas that seem to overshadow this. Cuz I’d never heard of it. When I went in there and they said he had Lewy body, and I’m like, “What is that?” “What does that mean?” You know? It was like some rare disease I’d never heard of, and I know now a lot of people have it.
Determining the cause
One individual with DLB and approximately half of caregivers discussed the need for more research on the cause of Lewy body disease:
Maybe this is where we should be starting first, maybe step back a little bit and say, you know, “Let’s look at maybe this’d be the cause of the—if a light went out, what made the light go out? Well, maybe the breaker tripped. Maybe the bulb burned out. Maybe the wire broke.” You know, there’s a lotta maybes.
Well, you’ve got to find the root cause… You know, you find the cause or the problems, and you can treat it or correct it.
In addition to desiring to know causes in general, multiple participants wanted further research regarding whether other health problems, prior injuries (e.g. head trauma), exposures (e.g. from mining), a history of shift work, or a traumatic event could contribute to developing DLB.
Multiple individuals with DLB and almost half of caregivers discussed the importance of research to improve early diagnosis (Table 2). While these respondents discussed the need for earlier diagnosis, particularly in circumstances where a diagnosis was delayed, one individual with DLB and two caregivers didn’t see value in earlier diagnosis without disease-modifying treatments:
Until you can actually do something about it, that just lengthens the time that you have this thread hangin’ over your head. So earlier diagnosis, I’m not sure matters as long as… there’s no cure.
Multiple individuals with DLB and caregivers described needing more research to help individuals with DLB, caregivers, and healthcare professionals recognize the signs of DLB (Table 2). Caregivers wanted research to focus on improving the accuracy of diagnosis, including distinguishing DLB from PD and dementia generally, particularly given widespread confusion regarding Lewy body terminology. Several individuals with DLB and caregivers desired more research into tests and biomarkers to assist with DLB diagnosis (Table 2). A small minority of individuals with DLB and caregivers desired screening tests to identify at-risk individuals.
Investigating what to expect and disease stages
A common theme amongst both individuals with DLB and caregivers was the need for research into what to expect with DLB progression:
l- looks at- would predict accelerating dementia so that it gives me a little bit of time in my pocket, if I’m progressing, to know that, and to know what to anticipate. So the big statistical analysis might be the right thing… this is what we expect his or her course will be.
I guess more on the stages, an’ I don’t know that they really know for sure, stages of it, how it progresses, an’ progression time.
In addition to desiring information on what to expect with disease progression in general, multiple participants described wanting research to identify stages of DLB.
I see that literature about the seven stages of dementia with Lewy body, and I think knowing more about the later stages now would be helpful.
Researching other people and see what stages—you know, seeing what stages their loved one is in and comp-, I mean, not compare but see, you know, the number of years… They say every person is different, but I guess if you gathered research and looked at it, you would see and kinda know what to expect, you know, at certain stages.
DLB symptoms needing additional research
Many discussed that research should investigate the symptoms and also medications to help:
Anything you can give him to tamp down his symptoms—anything you can give to make it so it’s easier for him to exercise, it’s easier for him to live his daily life, is very important.
Participants also desired research on non-pharmacologic strategies to address DLB symptoms, including therapy, exercise, meaningful activities, “natural” therapies, changes in diet and nutrition, and unconventional approaches such as hyperbaric chambers.
Look at people who have, a consistent habit of, aerobic exercise—versus people who don’t. Yeah, see if it makes a difference.
Nutrition and vitamin supplements, and chemical… And mostly because it has not been addressed.
Caregivers often wanted research on how to practically handle DLB symptoms in day-to-day life:
I’m very interested in how the brain works and what happened and how it all progresses… but I have to deal first with the practical.
Guidelines for when you should do different things, you know. Like, when is it appropriate to take over the decision-making?
Need for therapies to prevent, cure, or slow DLB
Multiple individuals with DLB and caregivers discussed the need for pharmacologic or non-pharmacologic disease-modifying therapies that will prevent, cure, or slow DLB:
If we know what causes it, there could be preventative care, kinda like, you know, heart trouble. We know we gotta have a low-calorie, low-cholesterol diet. We know we need to exercise.
Is there some interventional drug therapy or other therapies, boxing and, you know, whatever—that we could be doing? And if so, I think most importantly, what does that really buy us? If we go down this path, what are we really getting? Is it an extra week? Is it an extra year? And is that year really going to be better, or is it just prolonged?
Research on daily function, daily life, and quality of life
Multiple participants emphasized that research needs to focus on daily function:
Probably, people could live without knowing about how much your brain has shrunk if they’re told you have this degenerative disease… I would like to know more about it like how much has your brain shrunk that causes this, but the biggest issue is how are we gonna get through the day? What’s gonna be our big challenge today?
I think it would be important—with research on—on your daily functions because that’s important to all of us. It’s like our daily functions… [My husband’s] business required driving. And we had a small farm, and that required a lot of walking and feeding cattle. And he can’t drive anymore, and he got to where he could not feed the cattle, and I’d say your daily functions are very important.
Individuals with DLB and caregivers offered many topics pertaining to daily life that they felt were deserving of more research, including how to maintain socialization, maintain the ability to drive, identify emergencies, keep individuals with DLB safe, communicate well between couples (patient-caregiver), find support (e.g. good healthcare providers, external programs), handle non-DLB healthcare issues, make medical decisions, and strategize long-term planning. Research aiming to improve quality of life was another common theme, particularly from caregivers:
I wish mine had his quality of life back. I really do because he doesn’t have that anymore. He had to quit work. He’s on disability. He can’t drive.
Research on caregiving
Several individuals with DLB and most caregivers identified the need for additional research addressing different realms of caregiving, including caregiver burden and support, depression and how to handle impatience and frustration, balance external work and caregiving, identify alternative care options and ways to keep the individual with DLB at home, and identify resources to pay for caregiving needs.
Research should look into what support is needed for the patient, and what support is needed for the caregiver.
Depression. It’s a life-altering diagnosis… It’s been very difficult. I put on a face for him because he wants everybody to be happy and pretend that nothing’s wrong, but it’s hard. It’s very hard… [Research on how caregivers] are supposed to deal with a diagnosis like Lewy body. I mean, I want to help, but you’re in a well of your own to begin with.
Research on improving education
Almost all caregivers and half of participants with DLB described a need for improved education surrounding DLB and how research could improve educational efforts. While these opinions were provided in response to questions about research, it was sometimes unclear whether participants were expressing a need for more education clinically or a specific desire for research on this topic. Participants described a need for education in general and also specifically for physicians, medical trainees, therapists, patients, and caregivers/families. The most commonly described needs were education for non-specialist healthcare professionals and for caregivers.
I think there should be probably some more, uh, I guess they have to have yearly training or whatever, you know. I think that should be something that’s sort of at the forefront, because so many doctors don’t even know what you’re talkin’ about when you tell ‘em your disease. And, you know, all of them, a lot of ‘em.
[It] would be helpful for everybody to have a caregiver course, to help take care of the person, but also to learn how to take care of themselves.
Ranking research priorities
Most of the research topics queried in the interviews or mentioned by interviewees were identified by at least some participants as their top priorities for DLB research (Table 4). Symptoms described as priorities for research included cognition, hallucinations, movement, mobility, sleep, and mood. A few participants mentioned that obtaining the patient and caregiver voices is the most important thing to them.
The most important to me is that, for you reaching out to find out, you know, who are about this disease and from individual people and how they are feeling—you know, rather than just what’s in—you know, you’re reading in the books and stuff and to see it and hear it and talk about it for yourself, you know, I think it’s very important.
The study guide queried a variety of research categories and individuals with DLB and caregivers identified topics important for research in all of them—focusing on awareness, determining the cause of DLB, improving diagnosis, investigating what to expect and disease stages, DLB symptoms needing additional research, therapies to prevent, cure, or slow the progression of DLB, targeting daily function and quality of life, caregiving, and improving education. Furthermore, when participants were prompted to assign virtual money to research topics and identify their highest research priorities, at least one participant endorsed each of these areas. This highlights that research is needed across the DLB spectrum—basic science, translational, biomarker, natural history, drug development/therapeutic, quality improvement, and outcomes.
Published Lewy body dementia research priorities were developed primarily by experts and focus on disease mechanisms and processes (including animal model development), diagnostic criteria, terminology, risk factors/prodromal stages, longitudinal cohorts, pathological staging, imaging, biomarkers, genetics, new treatment targets, and preventative/disease-modifying and symptomatic treatments [5, 30]. The individuals with DLB and caregivers in this study supported and prioritized research on many of these topics. However, many topics proposed in this study were outside the national research priorities, possibly because the ADRD summit aimed to inform prevention and effective treatment of AD/ADRDs . Individuals with DLB and caregivers described needing symptomatic treatments but also more research on topics pertaining to how families should handle DLB symptoms in daily life, improving daily life in general, targeting quality of life, caregiving research, understanding disease progression, and improving education regarding DLB across populations (public, patients, caregivers, healthcare professionals).
Recommendations form the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers address some of the themes from current study participants—the need for research to understand different dementia trajectories, determinants of behavioral and psychological symptoms, caregiving, decision-making, and support and financial considerations, as well as research investigating pharmacologic and non-pharmacologic treatment strategies and studying complex, multicomponent programs accommodating care needs . The care summit also identified the need to understand what outcomes are important to persons living with dementia and to engage persons living with dementia and caregivers as part of research teams . Nearly half of the final research recommendations expressed ideas contributed by the persons living with dementia summit working group . This emphasizes the need for funders (federal and otherwise) to consider research priorities from both dementia summits (ADRD and caring) when developing funding announcements and selecting projects to support.
In this study, individuals with DLB and caregivers described several topics as needing research which professionals might put in the category of clinical care. For example, the need for more education across populations was a common theme. Many participants mentioned needs relating to daily life (decision making, independence including driving, socialization), practical caregiving considerations, when and how to obtain and use extra support, and finances. These practical research priorities are consistent with previously published research priorities of individuals with dementia and their caregivers. The top six overall research priorities identified through modified Delphi consensus involving participants from dementia advocacy organizations were (1) cure and treatment, (2) caregiving, (3) education and training, (4) quality of life, (5) complementary therapies, and (6) care settings . Similarly, dementia priority setting through the James Lind Alliance identified 10 research priorities, including maintaining independence, optimal care, pharmacologic and non-pharmacologic care, and caregiver support . A more recent dementia priority setting process in Canada identified 10 research priorities including investigating stigma, supporting emotional well-being, early treatment, health system changes, caregiver support, connection to education and support, necessary dementia-related skills and knowledge for healthcare professionals, dementia-friendly communities, best dementia practices, and non-pharmacologic treatments . Research priority setting for people with PD identified needed research on physical functioning, symptoms, coping, stress, socialization, relationships, support, autonomy, and good care and communication alongside prioritizing research addressing PD causes, diagnosis, subtypes and medication for both motor and non-motor symptoms [22, 23].
Differences in research priority-setting studies likely reflect the populations participating (e.g. country of origin; combination of patients, caregivers, advocates, healthcare professionals), the types of dementia represented, and the focus of the organizers or project leadership. The current study is also distinct from prior formal priority-setting work, as the goal of the current project was to investigate the views of individuals with DLB and caregivers at a single center, and not to use survey or formal consensus-building processes to build a top-ten list. The current results could serve as background for such a project specific to DLB. Regardless of methodology, it is clear from the current study and prior work that individuals with dementia and caregivers of individuals with dementia, including DLB, prioritize research targeting issues relating to living with disease alongside efforts to better understand the cause of DLB and identify a cure.
Indeed, research into the topics discussed by participants is sorely needed. It is estimated that that 1 in 3 cases of DLB may be missed  and initial misdiagnosis is common [32, 33]. It takes over a year for half of individuals with DLB to receive a diagnosis . Family members of individuals who died with DLB described both lack of knowledge of what to expect and negative experiences relating to lacking healthcare professional education and knowledge [12, 34, 35]. While α-synuclein deposition has been the presumed pathogenic cause of DLB for years, recent re-analysis questions this assumption . There are no biomarkers for DLB and no treatments for DLB approved by the U.S. Food and Drug Administration. Caregiver burden in DLB is high [17–19] and quality of life is negatively affected by DLB [20, 21].
This study is the first to evaluate the research priorities of individuals living with DLB and caregivers of individuals with DLB. This study can inform survey development to identify research priorities of a larger group of individuals living with DLB, serve as the background for formal research priority-setting in DLB, and help guide research planning. The study recruited individuals with DLB and caregivers from a single United States-based center of excellence, affects generalizability, though the identified topics were consistent with publications enrolling stakeholders with other dementias and PD. It is plausible that a different cohort could have identified different or additional themes. For example, because enrolled individuals with DLB had to have mild-moderate dementia (such that they could participate), they and the caregivers who enrolled with them as part of dyads may not have considered end of life research questions, which could potentially be a priority for families dealing with advanced DLB. Furthermore, interview questions were open-ended within categories and additional prompting regarding research topics could have resulted in different responses. The study specifically sought the opinions of individuals with DLB to give them an active voice and role, but several of the participants struggled to understand and answer the questions or perseverated on certain answers, limiting the information that could be gained from those interviews. Most participants were of white non-Hispanic backgrounds and had high educational attainment, potentially affecting generalizability. Similarly, most participating caregivers were wives and it is plausible that other caregiving roles (e.g. husbands, children caring for parents) would have different priorities.
Individuals with DLB and caregivers of individuals with DLB identified areas needing more research related to DLB awareness, causation, diagnosis, prognosis and DLB stages, core and supportive symptoms, disease-modifying and symptomatic treatments, issues relating to daily function and quality of life, caregiving, and education across populations. These findings support the research priorities defined in the NIH care summits in addition to the NIH ADRD summits. Further research is needed across all domains of DLB. Research funding should be informed by the priorities of all relevant stakeholders and support research investigating causes, natural history, biomarkers, and treatment in addition to research targeting themes regarding living with this disease (e.g. independence, quality of life, caregiving, and education).
S1 Checklist. COREQ checklist.
COREQ 32-item checklist outlining the page where each element of qualitative research is reported.
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