Eleven interviews were conducted with respondents representing each stakeholder group on the SAC; persons living with dementia (n=2), family care partners (n=4), and health and social care professionals (n=5). In the “health and social care professionals” category a geriatric and palliative care physician, palliative care nurse, hospice chaplain, and two community organization staff members were interviewed. The project lead and key personnel who were closely involved in the planning, coordination, and facilitation of the project’s research capacity building and engagement activities were excluded from interviews. Other SAC members who were not interviewed were excluded due to scheduling challenges, though final respondents did include representatives of each of the various stakeholder groups on the council.
Key principles important for successful multi-stakeholder engagement that center around persons living with dementia were identified. These principles are categorized into four overarching domains: accessibility; council infrastructure; values and environment; and benefits of involvement. These domains and themes are presented in Figure 1 and described below with selected quotes to represent each theme.
Accessibility
It was important to SAC members that the group used a common language to communicate and translate research in an accessible and inclusive way. This was reflected in their preference to have scientific literature adapted by the project team into more accessible forms of information delivery, particularly by way of visual alternatives. Respondents reflected that not only did they prefer when information was shared in an accessible structure and format, but that they appreciated when the SAC and project team would avoid the use of technical jargon and would deliver information multiple times.
“[The project lead] was very cognizant that not everybody in the room had a large or small research background. We started everything at the beginning…….Visuals. Visuals. Visuals, visuals, visuals.” – Family care partner 2
“…[the project team] deliver it in such a synchronized way that if you didn't get it the first time, you're gonna get it the second time. If you didn't get it last week, then you're gonna get it at this meeting.” – Health and social care professional 4
“They’ll go back and talk through it again and that helps.” – Person living with dementia 1
How the project team approached the planning and logistics of engagement and research capacity building activities was a key subtheme reflecting how SAC members perceived the accessibility of the project. The meeting times and locations were important to all members of the SAC. The community members’ needs were prioritized when choosing meeting times and locations, although the logistics were challenging to ensure all SAC members could participate in every meeting. Clinicians were challenged by busy clinic schedules while community members were challenged to commute to the traffic-dense university setting. The meeting times and locations were modified several times and video-conferencing options were also available.
“…but obviously [meeting] location was forever North. That’s a problem.” – Family care partner 2
“I wish I could be much more engaged than I am…… When they moved the meetings to Mondays, it became very difficult because Monday is my clinic day, and I couldn’t participate as much.”- Health and Social care professional 2
Following COVID-19, all SAC meetings took place online via Zoom video conferencing software. SAC members felt that while meeting in-person was preferred, there were some benefits to attending meetings online. In particular, clinician members of the SAC were better able to attend virtual meetings in-between their clinic duties and persons living with dementia and care partners were no longer needed to travel.
“I would say the biggest challenge is time... but for a caregiver or a member from the community or whatever, wow. That’s hard to go to [the university] and what floor and what classroom.” – Health and social care professional 5
“Yes, when COVID started, we had Zoom, and that platform has been used for many of our––well, it's almost our day to day life.” – Family care partner 3
“You start off [on Zoom] and it’s just like talking to you right now. It's a pleasure. It's enjoyable.” - Person living with dementia 1
Council infrastructure
SAC members expressed that the council benefitted from the diverse representation of multi-stakeholder perspectives and experiences in the group. They felt they brought something unique to the group from their different professional and lived experiences. SAC members stressed the value of having a council representing diverse perspectives but emphasized the need to hear from persons living with dementia.
“I feel such a mutual respect for one another, personally and for their opinions, that they have value. That’s not always seen in a mixed group, as we have, I don’t think. I don’t think it’s as common as what I’ve seen with our committee group. I really appreciate it…” – Family care partner 1
“What I liked about being a part of the group was hearing from the patient and caregiver perspective what really matters to them and how, as healthcare providers, we don’t even take into consideration some of the things that would actually make a better difference in their quality of life.” – Health and social care professional 2
“Well, just like hearing specifically from people with dementia, who better to hear about this whole experience from?” – Health and social care professional 1
Respondents felt that members of the project team responsible for facilitating the SAC activities need to be ‘dementia aware’, including having knowledge about dementia and being respectful, patient, and considerate of the accommodations individuals living with dementia and family care partners may need to stay involved. In discussing preferences for dementia aware project leads, respondents shared their conceptions of how they perceived typical researchers’ approach to engagement and valued when facilitators would take a different, more transparent approach.
“[The facilitator’s] leadership style is intentional, it’s purposeful, it’s inclusive, and it’s also very humbling, which—I don’t think it’s a common word choice to use in research, but their research approach is very—confident enough to humble and be, like, ‘These are my areas of expertise. This area or this community is not.’… They seek it, they welcome it…” Family care partner 2
Values and environment
SAC members shared distinctive collective values and standards for the group culture. Respondents across all representative stakeholder groups shared that they were valued and respected for their contributions. Having a unique space and role on the council was important to members, some reflecting a sense of pride and responsibility as representatives of a wider network of stakeholders.
“It’s been a rewarding experience for me to feel like I’ve had a voice in it and, hopefully, have represented other caregivers well in my concerns and shared experience with those on the committee who haven’t been a caregiver.” – Family care partner 1
“I have had no problem at all in sharing what I felt we could do, or start, or explore. All the members have always, I think, looked forward to what I had to say.” – Health and social care professional 2
“I think they do (value opinions and input) particularly if they ask me a question, I answer it. There’s a whole group of us. Is anybody better than anybody else? I don't know.” – Person living with dementia 1
A key value shared by respondents was the cultivation of an inclusive environment where SAC members could feel comfortable to share their opinions and perspectives. Inclusivity was often attributed to the non-hierarchical structure of meetings where all members of the SAC were invited to share and listen from their unique perspectives.
“From the first day of the meeting it was very evident that that's why we were there, and everyone was sharing their thoughts and concerns, including [my spouse living with dementia]." Family care partner 4
“I have to say I’ve always felt safe. I’m a person who tries to create safety. Bringing our team together and making sure that we’re all equal, if you will. I feel like I’ve contributed to that, but I’ve also felt that, certainly.” Health and social care professional 5
SAC members were motivated to participate in the project for different reasons, many expressed an altruistic incentive to contribute to dementia care research. They had a strong desire to help others with their work, recognizing their participation might inform the direction of future research that could benefit others. Their altruistic motivations extended from their desire to help their friends, families, as well as society at large. Being part of something bigger was important for SAC members who recognized that not everyone had the ability to participate in similar opportunities.
“I know that with that responsibility comes the benefit directly to impact my family, myself, my community, society. I’m cognizant of that, and so I happily take it with that in mind.” – Family care partner 2
“I'm not gonna hide it. I'm gonna let everybody know I've got it, and if I can be of any help to anybody, I'm here.” – Person living with dementia 1
Most SAC members identified the need for a cultural awareness in the group and in the activities of the project. They felt it was important to seek diverse cultural representation within the council structure and to foster an environment that is inclusive for different ethnic and cultural backgrounds. Some SAC members of historically underrepresented groups felt a sense of responsibility to represent and educate others about their lived experiences.
“We need to get people who look like the people that we're trying to reach: the Hispanics, the African Americans, the minorities, the people who are not as privileged. It can't be the perception of this is a white person's cure.” – Family care partner 3
“It feels like the responsibility to educate the entire room. As much as they’re receptive and respectful, it’s also very exhausting.” – Family care partner 1
Benefits of Involvement
The activities of the SAC were primarily developed to facilitate capacity-building for patient-centered outcomes research. Participants, however, identified additional personal benefits beyond the purpose of research. The development of knowledge and skills through participation on the SAC was an added benefit for interviewees who felt they could translate their skills to their personal and professional lives. Health and social professionals often shared that engaging with individuals living with dementia and care partners in a collaborative setting, as opposed to clinical or service-based, provided the opportunity for them to integrate communication techniques into their work.
“Certainly taking that out to the—my colleagues and my work, and we’ve implemented ways that I think we’re hopefully explaining better, helping people understand the disease better, and helping people understand what the diagnosis is gonna look like.” - Health and social care professional 3
“Yes, definitely, the biggest part, obviously, to me is I wanted to improve—to learn about ways to improve my caregiving with fact- based, research-based techniques that have been applied, that professional – that works, or doesn’t work, or semi-works, or it works in conjunction with A, B, C, for sure.” – family care partner 2
Further, they felt their participation provided opportunities for socialization, building their communities, and the chance to share and listen to diverse perspectives and stories. The element of peer support and social connection was particularly resonant in the context of the COVID-19 pandemic, where SAC members were experiencing the social consequences of distancing safety precautions.
“I don't want to use the word “fun” but fulfilling. It's been fun. It's been supportive for me, and I believe for Michael… Just knowing that we're not isolated has been extremely helpful.” – Family care partner 3
“[The meetings] gave some meaningful activities and something meaningful, too, for the council members. It was more like a family environment. People could just be themselves…” – Health and social care professional 2
Another key benefit reflected in respondent interviews was that SAC members see the value in the work being done. SAC members expressed that they felt they met and exceeded the goals of the original project and had confidence that their work would make a difference in the field of dementia care research. Interviews reflected a sense of accomplishment and belief in the purpose of the project.
"I think we accomplished a lot in that, and painstakingly, I know, for those who have been at the helm. I think a lot of useful information will be obtained for research purposes..." – Family caregiver 1
“I think the council has done, as I told you, much more than just focusing on the proposal. It’s been many more benefits to everybody… You do research, and you think you know it all, and you go into the community, and you ask questions, but here you are realizing that maybe what you were asking or what you were trying to research is not really what needs to be done.” – Health and social care professional 2