A research article published in the Journal of the American Geriatrics Society discusses how researchers can better involve people living with FTD and other types of dementia in discussions to identify research priorities. The article provides strategies for involving people living with dementia and identifies areas for improvement in emergency care for people with dementia.

Current AFTD Persons with FTD Advisory Council member Deborah Jobe and founding council alumna and former co-chair alumna Teresa Webb, RN, are among the co-authors of the article. Other co-authors included many members of the Geriatric Emergency Care Applied Research Network 2.0 – Advancing Dementia Care (GEAR 2.0-ADC), an initiative funded by the National Institutes of Health.

Inclusion of People with Dementia Is Essential for Advancing Research

Researchers studying FTD and other dementias have noted the importance of involving people living with a diagnosis and their care partners in research design. Not only can people living with dementia offer insights from their lived experience, but they can also highlight relevant priorities for scientists to address unmet needs. However, as the authors highlight, there are few established guidelines for engaging people living with dementia in research.

Involving people living with dementia can not only improve research design, but foster empowerment and a feeling of inclusivity for participants, the authors note. But meticulous planning is necessary to meaningfully involve this cohort.

To that end, researchers at GEAR set out to convene a “consensus conference” that would bring together researchers, health professionals, people diagnosed with dementia, and care partners. The goal of the conference, which was held in 2021, was to provide research priorities for emergency dementia care, though the conference would also demonstrate strategies for involving people living with dementia in research design. The GEAR team hoped that a virtual conference would be more accessible for people living with dementia.

Proactive and Adaptive Support Can Foster Research Engagement

A year prior to the conference, the conference administrative team invited four people with dementia and two care partners to participate in working groups, in which they and GEAR researchers conducted scoping reviews of one of four topics, such as care transitions or communication and decision making. The groups met monthly to develop the scoping reviews, while the GEAR team met frequently with individual participants to provide clarifications and assist them as needed. To avoid obstacles that could arise during a live presentation, the GEAR team let participants record their experiences and perspectives, and supported them throughout the recording process.

Participants received materials written in plain, easy-to-understand language to further promote accessibility. Additionally, in the six months leading up to the conference, the GEAR team provided tailored support to participants to meet their individual needs.

“I remember they had meetings with us to try to prepare us for [the conference] and they were trying to figure out what was the best approach for each and [every] one of us,” one study participant with dementia said. “Some of us required paper documents and some of us wanted it online. No matter what it was, they went out of their way to ensure that we got what we needed.”

During the consensus conference, attendees heard testimonials from people with dementia and care partners, and participated in breakout sessions where groups discussed the scoping reviews on priority research topics. A post-conference report summarized research priorities that attendees had identified, and the GEAR team collected feedback from people with dementia and care partners.

After analyzing that feedback, the authors identified four main areas of consideration, each encompassing several strategies for involving people living with dementia in research through a virtual consensus conference:

Consideration	Strategies
Participation	Train study team to better understand the needs of people diagnosed and their care partners. Accommodate variability in people’s abilities and be adaptable with procedures. Ensure all materials are in simple, understandable language. Regularly ask participants for feedback, and adjust procedures as needed. Allow time to build relationships and to facilitate the reciprocal learning of what living with dementia is like.
Virtual Teleconference	Ensure that the virtual platform supports the features necessary for your work, like screen sharing, recording, and attendee participation tools. Review audio/video quality, internet connectivity issues, and device compatibility prior to conference. Hold a test run with a smaller group of participants to identify potential problems.
Working Groups	Ensure adequate time for group members to review literature and for questions to be answered. Leverage lived experience relevant to the discussion topic. Consider if additional time is necessary for people living with dementia to connect on discussion topics before or after work group meetings. Break apart more complex tasks into smaller, more manageable steps to increase accessibility. Allow breaks to minimize fatigue.
Analysis and Dissemination of Results	Analyze data in ways that account for differences in cognitive ability among participants. Use visual aids to represent data in a more straightforward manner. Augment data with insights from lived experiences to best represent what dementia is like. Make data available in multiple formats, such as audio, visual presentations, or written materials.

Overall, the results of the conference highlight the value of person-centered research methods and taking an adaptive approach to involving people living with dementia. By approaching involvement with sensitivity to the variability in people’s symptoms, knowledge of cultural differences, and patience, researchers can foster lasting partnerships with people living with dementia.

Involving people diagnosed with dementia and care partners is important for further research; however, ensuring that diverse groups are adequately represented in research is also essential. As highlighted by a previous research paper, more work is needed to address the gaps in diversity among research participants.

Are you interested in participating in research? The FTD Disorders Registry not only helps keep you up to date on participation opportunities, it allows you to share your lived experiences to guide researchers.