Abstract
Objective: Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group. Methods: The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations. Results: The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD. Conclusions: The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 421-430 |
| Number of pages | 10 |
| Journal | American Journal of Geriatric Psychiatry |
| Volume | 28 |
| Issue number | 4 |
| DOIs | |
| State | Published - Apr 2020 |
Keywords
- Dementia
- participatory research
- patient engagement
- patient-centered research
ASJC Scopus subject areas
- Geriatrics and Gerontology
- Psychiatry and Mental health
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In: American Journal of Geriatric Psychiatry, Vol. 28, No. 4, 04.2020, p. 421-430.
Research output: Contribution to journal › Article › peer-review
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TY - JOUR
T1 - Contributions of Persons Living With Dementia to Scientific Research Meetings. Results From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers
AU - Frank, Lori
AU - Shubeck, Emily
AU - Schicker, Melanie
AU - Webb, Teresa
AU - Maslow, Katie
AU - Gitlin, Laura
AU - Hummel, Cynthia Huling
AU - Kaplan, Edward K.
AU - LeBlanc, Brian
AU - Marquez, Myriam
AU - Nicholson, Brenda
AU - O'Brien, Greg
AU - Phillips, Louise
AU - Van Buren, Brian
AU - Epstein-Lubow, Gary
N1 - Funding Information: For research meetings about care and services for persons living with dementia, inclusion of the lived experience of individuals with cognitive symptoms is intended to improve the quality of the discussion and provide a link to actual practice as experienced by service users. The accomplishments of the Summit Stakeholder Group of Persons Living with Dementia demonstrated the feasibility of involving a group of individuals living with cognitive impairment in this process, and the influence of this Group on the Summit is evident, in part, from the correspondence between final research recommendations generated by the Summit and the core themes from the Outcomes that Matter proposed by the Stakeholder Group ( Table 2 ). Anecdotally, Summit organizers heard skepticism from some researchers involved in Summit planning about the feasibility of a PLWD Stakeholder Group, both for convening regularly to generate suggestions for the conference agenda and for ability to present during the Summit. Few of these researchers and clinicians had experience partnering with PLWD on research initiatives. The Summit Co-Chairs received substantial positive feedback about the added value of the PLWD Group input on the Summit agenda and its research recommendations following the meeting. This positive feedback occurred following dialog between Summit planners and the PLWD Group, and at completion of the Summit. While accommodations to support participation are required for many types of patient stakeholder work, some aspects of the PLWD Group process were unique due to the cognitive impairment of members. Selection of group members was consistent with new guidelines emerging for engaged research with PLWD (e.g., ref. 24 ), ensuring participants can participate with appropriate accommodations, to best ensure participant well-being and to best meet the needs of the engagement. Group member selection also prioritized advocacy experience over disease representativeness given the goals of this and all of the Summit Stakeholder Groups. This prioritization is similar to a model reported by Iliffe et al. 31 To comprehensively address potential supports for members of the PLWD Group, accommodations were provided, such as time during each meeting for group facilitators to assist with “troubleshooting” for use of the videoconferencing platform, and members were asked for the name of at least one contact person to aid with communication and meeting reminders and also to ensure there was a point of contact in the event of health-related absences. Facilitators ensured that participant autonomy was respected while also maintaining vigilance for the need to create supports and protections for the participants, similar to those required for vulnerable populations involved in research. The differences across individual participants in manifestation of symptoms of cognitive impairment required the facilitators to address issues as they arose and on a case by case basis. Disease-related symptoms and disease progression impacted most Group members, suggesting that graduated types of participation should be considered for groups of PLWD. As one PLWD Group member said, “The farther away, the dimmer the memory.” Of note is the ESAG program policy of limiting participation to 1 year. The Summit's Stakeholder Group of PLWD committed to peer support, raising the possibility of group-initiated strategies for continued participation as needs for support and assistance change with disease progression. Future Research Directions: Individuals and groups with experience integrating PLWD in the planning and implementation of research should report on processes and outcomes similar to those described in this report, to provide guidance for future groups and to provide researchers, PLWD, and other stakeholders with a comprehensive and realistic view of working with PLWD in this capacity. While most of the Summit's PLWD Group had mild symptoms, and additional research is needed regarding working with people during early stage illness, future study should address the ethical and practical issues associated with proxy reporting. For example, it may be desirable to identify “co-reporters,” individuals with a relationship to the person living with dementia who can assist with representing the voice of the person living with dementia, in a supportive manner. These individuals may serve as “co-reporters” with their PLWD, bridging between fully independent participation by PLWD to supported participation as symptoms progress. Research should also address the appropriateness and feasibility of involvement of proxy informants and “proxy participants,” individuals who can represent the views of specific PLWD, to aid with groups with very long-term goals. It should be noted that the Summit Steering Committee also created a separate stakeholder group for Caregivers. Proxies to support participation by PLWD at all stages of disease severity would facilitate inclusion of the PLWD perspective, which is distinct from inclusion of the caregiver perspective. However, care must be taken to avoid excluding participation of individuals without a proxy available, and to ensure the capture of perspectives including those without a readily available proxy, for example, people who live alone. New research should address the potential benefits and risks of asking people with early stage symptoms to project into the future regarding research questions and perspectives of people with advanced symptoms and at end of life. Similarly, consequences of encouraging group members to represent only their own views instead of the views they expect others like them to hold requires additional attention. Obtaining input from small numbers of any group raises issues of selection bias, an issue not limited to PLWD. Heterogeneity of personal circumstances as well as clinical features adds to the challenges involved in inclusion of “patient voice” particularly for vulnerable populations such as PLWD who by definition lose capacity for some aspects of self-expression as symptoms progress. Cognitive disorders have heterogeneous symptom presentations. A comprehensive phenomenology and increased public and scientific attention to symptom diversity is warranted. Some clinicians who interacted with Group members questioned the accuracy of diagnoses, given the strength of members’ thinking and contributions. Such skepticism can undermine the goal of patient inclusion and has the potential to disrupt successful group process. Attention to symptom heterogeneity can help with identifying who is represented, as well as who is un- or under-represented, when patient inclusion is the goal. Group members themselves note that they were largely highly functional during their participation, and that many members had advanced educational degrees. There was recognition that this group was not representative of the full range of people living with dementia. Implementation of groups with a different mix of functional abilities and educational levels may require different supportive strategies. The convening of the Stakeholder Group for Persons Living with Dementia provided clear input into the agenda for a major national research meeting on dementia. The group process evolved over time and the final format was effective for this particular group and may serve as a model for future groups. The authors would like to acknowledge the support of the Alzheimer's Association, which provided staff time for group facilitation and Zoom/teleconference support, and the National Institutes of Health, which provided travel support for meeting attendance. There is no funding for the study. The authors have no disclosures to report. Disclosure: Dr. Gary Epstein-Lubow has received support for research from NIH, NSF, The John A. Hartford Foundation, and The Rhode Island Foundation; he has received other support or compensation from Hebrew SeniorLife, Butler Hospital, Alpert Medical School of Brown University, the Administration for Community Living, the Health and Aging Policy Fellows Program, the Gerontological Society of America, and the Tufts Health Plan Foundation. During completion of this work, Dr. Epstein-Lubow was a nonfederal member of the U.S. Department of Health and Human Services' Advisory Council for Alzheimer's Research, Care, and Services; the views and opinions expressed in this manuscript are his own and do not reflect the views of the Council. Funding Information: The authors would like to acknowledge the support of the Alzheimer's Association, which provided staff time for group facilitation and Zoom/teleconference support, and the National Institutes of Health, which provided travel support for meeting attendance. There is no funding for the study. The authors have no disclosures to report. Disclosure: Dr. Gary Epstein-Lubow has received support for research from NIH, NSF, The John A. Hartford Foundation, and The Rhode Island Foundation; he has received other support or compensation from Hebrew SeniorLife, Butler Hospital, Alpert Medical School of Brown University, the Administration for Community Living, the Health and Aging Policy Fellows Program, the Gerontological Society of America, and the Tufts Health Plan Foundation. During completion of this work, Dr. Epstein-Lubow was a nonfederal member of the U.S. Department of Health and Human Services' Advisory Council for Alzheimer's Research, Care, and Services; the views and opinions expressed in this manuscript are his own and do not reflect the views of the Council. Publisher Copyright: © 2019
PY - 2020/4
Y1 - 2020/4
N2 - Objective: Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group. Methods: The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations. Results: The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD. Conclusions: The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.
AB - Objective: Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group. Methods: The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations. Results: The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD. Conclusions: The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.
KW - Dementia
KW - participatory research
KW - patient engagement
KW - patient-centered research
UR - http://www.scopus.com/inward/record.url?scp=85076200936&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85076200936&partnerID=8YFLogxK
U2 - 10.1016/j.jagp.2019.10.014
DO - 10.1016/j.jagp.2019.10.014
M3 - Article
C2 - 31784409
AN - SCOPUS:85076200936
SN - 1064-7481
VL - 28
SP - 421
EP - 430
JO - American Journal of Geriatric Psychiatry
JF - American Journal of Geriatric Psychiatry
IS - 4
ER -