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 »
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
Gather existing data on the local and targeted community, including: available CMS data on AD prevalence by county level; census data on race, ethnicity, education, religion, and geographic distributions; publicly available community health assessments. Complement data with qualitative reports to account for individuals with low health-seeking behavior.
My husband and I have retired to Alcona County in rural northeast Michigan. The population in this county is the 7th oldest in the U.S. but we have such poor medical resources that very little is going on in the way of clinical trials. I am a retired BSN from U of M and personally know there are many retirees here who would gladly participate in research dealing with aging by filling out lifestyle surveys, diet diaries, ...more »
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.
For middle-aged and elderly there are logistics/time demands that might make participation a low priority. BUT for the younger generation concerned about their parents and grandparents they might be a helpful beacon for awareness raising activities such as: visiting local elderly homes/communities/events; creating and distributing outreach campaign materials; making trial participation "cool" via stickers/buttons that ...more »
Provide educational events for professional health providers, and integrate education into existing CME-based training, particularly for primary care physicians in community health centers
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.
Identify goals for the participant relationship maintenance program (e.g., monthly contact to show continued appreciation), and strategies to accomplish (e.g., luncheons, personal notes). Host at least annual events summarizing research and thanking current research participants and their families / kin structure
True commitment to engaging, recruiting and retaining members of minority or underrepresented populations in Alzheimer's research, could be demonstrated by ensuring that clinical investigators,"steering committees"and research teams are consistently representative. Strategies that have proven successful, though perhaps more labor and cost intensive, should be promoted. Building enduring relationships in minority communities ...more »
There is famous and there is famous to the local community. Since all recruitment is local, meaning you have to go to a clinical site to enroll in a trial, the local community is the group of people who understand that your site is famous in Alzheimer's research. And famous to the local community is precisely the goal of just about all recruitment now. You don't need to be Harvard or Yale. You don't even need to have ...more »
Develop a document with key information about the impact of AD in each of the targeted communities, and information about the research project for lay and for professional audiences. Develop a listing of local media outlets (e.g., minority-owned or -focused media outlets and publications, local television stations, rural newspapers or radio shows, support groups, church gatherings, health fairs and events). Develop and ...more »
Use Area Agencies on Aging to connect with people at the community level who might be willing to participate in research. These entities have the trusted connections/relationships necessary to help encourage people to sign up, and encourage others to do the same.
Leverage a broad spectrum of interactive communication technologies, particularly for rural populations and individuals living alone.
Expand awareness to the Hispanic Community so they can benefit from programs and participate in intervention programs. This will overall benefit the state.
Trial match can partner with Alzheimer and LBD associations to create a listing of caregiver groups for Doctors and Facilities So to help caregivers find help. This will also assist in recruiting candidates for studies by increasing awareness. Providing speakers to these caregiver groups would enhance the effect. I include LBD because of the misdiagnosis of LBD as AD with terrible consequences.