Each May, Older Americans Month is observed to celebrate the contributions being made by older adults across the country. The 2020 theme is “Make Your Mark,” encouraging everyone—older and younger people alike—to use their time and talents to make a difference in their communities, in the lives of older adults, and in support of those who care for older adults. Within the next decade, the number of Americans aged 65 and older is projected to grow to 74 million—more than doubling in size since 2000. As this population grows, it becomes increasingly important to prioritize and address issues that affect older adults and their loved ones.
Alzheimer’s Disease and Related Dementias: A Public Health Crisis
Alzheimer’s Disease and Related Dementias (ADRD) are labeled as a public health crisis due to increased prevalence rates, a growing older adult population, and the fact that these conditions continue to go uncured, affecting an estimated 5.8 million Americans. The impact of ADRD extends beyond the individuals living with these diseases, affecting caregivers, family members, and the healthcare and medical communities. The Alzheimer’s Association estimates that in 2017, 16 million family members and friends provided 18.4 billion hours of unpaid care to people with ADRD, at an economic value of more than $232 billion. Beyond the large amounts of time needed to provide care, ADRD can affect the psychological and physical well-being of family members and caregivers, with studies linking stressors associated with caregiving to high rates of anxiety and depression, and poor physical health.
Challenges to Alzheimer’s Research: Recruitment and Retention
Progress toward research on ADRD treatments and preventions is gaining momentum. As a result, clinical research sites are tasked with keeping this momentum going by quickly recruiting and retaining research participants who are most affected by these conditions and have the highest likelihood for engendering further progress. But, recruitment and retention of clinical research participants can be time-consuming and costly, and these processes are often not at the forefront during study protocol creation. Most research site staff lack the training and resources necessary to conduct outreach that effectively targets audiences and changes their attitudes toward participating in research (e.g., fear, misperceptions, mistrust) and desired behaviors (e.g., seeking information about ADRD clinical trials for themselves or a family member). Although ADRD disproportionately affects racial and ethnic minorities, limited attention has been given to developing health communication approaches for effectively engaging diverse groups in research on these diseases. Additionally, the appearance of COVID-19 recently brought a whole set of new challenges to the clinical research community, as they attempt to balance protecting the health of research participants with adherence to study protocols and timelines.
Fors Marsh Group Efforts to Improve Alzheimer’s Research
Fors Marsh Group (FMG) leverages its expertise in communication research and special populations to support the National Institute on Aging’s (NIA) goal to create resources that engage more diverse participants in ADRD clinical research. Our work with NIA focuses on increasing participation within underrepresented racial and ethnic minority groups—especially those that are disproportionately affected by ADRD—to support equitable access to potential new treatment options. Last year, FMG and NIA began developing and testing recruitment communications geared toward Hispanic and Latino individuals. In subsequent years, similar research will be conducted to develop communications for Native American and Asian American populations. Other work with NIA involves piloting a model for clinical research that will make research more accessible to underserved populations by bringing the research into communities, and developing a web tool that will allow community-level recruiters to customize recruitment resources to local needs. By providing NIA with evidence-based resources and tools for outreach to underrepresented groups, FMG helps ensure that national efforts to find treatments and preventions for ADRD are not overlooking groups who might benefit from them the most.