Identify ways to expose study staff to life with dementia in the target community (e.g. Wash U Duo Program). Identify ways to include those living with dementia on the study staff, Advisory Boards, and local engagement teams.
Building Relationships with Local Communities
Goal: To increase recruitment and retention of participants into Alzheimer’s and dementia research at the local level, focusing on inclusivity and diversity in age, race, ethnicity, sex, education, income, urban-rural demographics, and cognitive status (asymptomatic, MCI, AD and related dementias).
Ideas in this area might address:
- Planning for diversity and inclusion
- Building and sustaining relationships with community partners
- Community collaboration on research design
- Study design to facilitate participation
- Overcoming barriers
- Systems and infrastructure to support inclusive outreach
- Role of funders, organizations, policymakers in implementing
Work with CAB Members to ensure ongoing community presence and responsiveness to community needs.
Expand awareness to the Hispanic Community so they can benefit from programs and participate in intervention programs. This will overall benefit the state.
For individuals who fail to meet entry criteria for a study, offer other research opportunities so that there are no ‘closed doors’ to those who express an interest in research.
Consider offering individualized research feedback at the end of the study (or at regular intervals), such as z-scored cognitive data, so that participants may understand how they have performed.
Build on targeted advertising and popular social media platforms to engage families and communities about Alzheimer’s and dementia, particularly to address local communities’ fears or myths.
I recommend creating dementia support groups. Many of us are skidish about trials because they often involve untried medications. It’s also very difficult to get our family members to agree to do anything apart from what is advised specifically by their doctor. Meeting in groups where all kinds of behaviors, coping skills, and options are discussed would make me feel more comfortable about steering my husband in one ...more »
People struggling with poverty can be a difficult group to access for studies for a variety of reasons. One of those is the difficulty they face if their normal modes of transportation are unreliable or incompatible with appointment times. If the study arranges and pays for Uber, Lyft, or taxi service allows the study participant to take the least amount of time away from other responsibilities, and reduces a potential ...more »
My mom was in a Memory care facility for 3 years and I didn't have any connections to research, best practices, etc. I think that supplying a handout to family members and the option to be added to a data base when the patient is admitted to these facilities would be beneficial for all concerned.
Ensure that materials are linguistically accessible by leveraging centralized translation services that may be modified or approved by local community champions.
Involve populations of interest in the design of the trial, to help address issues such as disclosure of plaque or genetic status, number of screening steps before enrollment, open label status, etc.
Provide participants with individualized and genuine attention and demonstrate commitment to ongoing outreach. Enlist a research navigator, ideally from local or targeted community, to assist with recruitment, and assist participants through all phases of screening, enrollment, and research.