For Black families navigating the complexities of dementia, a new initiative offers not just support, but an opportunity to reshape the landscape of care. The SHARE for Dementia program, spearheaded by the Cleveland-based Benjamin Rose Institute on Aging, is actively recruiting Black Americans for a vital clinical trial. This concerted effort seeks to address long-standing disparities in healthcare research and ensure that future dementia interventions are truly inclusive and effective for all.
Dementia casts a wide shadow, but its impact disproportionately affects Black communities, who face higher rates of Alzheimer’s disease and related dementias. Despite this, Black Americans have historically been underrepresented in clinical trials, creating a critical gap in understanding how treatments and support systems can best serve them. This trial aims to close that gap, offering an evidence-based care-planning program designed to empower individuals with early-stage dementia and their families.
What is the SHARE Program?
The SHARE program, an acronym for Support, Health, Activities, Resources, and Education, is an innovative approach to dementia care. It focuses on engaging individuals in the early stages of dementia, along with their care partners, in proactive discussions about symptoms, care values, preferences, and healthy activities. This early engagement is crucial, as it allows families to plan for tomorrow while making the most of today.
A key component of the program is a free iPad application that guides families through the communication and care coordination process. This app allows individuals living with early-stage dementia to participate both visually and verbally in decision-making, helping them assign daily tasks related to finances, food preparation, personal hygiene, and other activities to care partners, family, friends, or service providers.
The program is delivered by trained SHARE Counselors, who are professionals such as social workers, geriatric case managers, program educators, and nurses. These counselors undergo comprehensive online training, complete with videos and real-case examples, and receive ongoing coaching and written manuals for reference.
SHARE isn’t just a new idea; it’s built on a strong foundation of research. Two decades of studies by the Benjamin Rose Institute on Aging’s Center for Research and Education have shown that individuals with early-stage dementia benefit significantly from interventions that boost their active participation in their care plans. The program boasts high satisfaction rates, improved communication within families, and an increased use of essential services among participants. Its efficacy is further underscored by its inclusion on the National Council on Aging (NCOA) website’s pre-approved list of evidence-based programs.
Why Black Participation is Essential
The deliberate recruitment of Black families into the SHARE program is paramount. Without diverse participation in clinical trials, research findings may not be generalizable or fully effective for all populations. For Black families, participation offers a critical pathway to more equitable and culturally competent dementia care.
As Ronda Crayton, whose mother is participating in the SHARE program, told News 5 Cleveland, “It’s something that people don’t want to talk about, but if you don’t talk about it, you won’t learn anything, or if you keep it to yourself, you won’t get the help you need.” Participation ensures that the unique experiences, preferences, and cultural values of Black Americans are integrated into future care models, leading to more tailored and effective support systems. It also empowers families to play a major role in future care planning and to ensure their voice is heard.
Moreover, when Black families participate, they inspire others within their communities to seek help and engage in these vital conversations. “If someone sees someone like my mom that’s willing to reach out and get that type of help, they may be willing to actually be more involved,” Crayton adds. This ripple effect can dismantle stigmas surrounding dementia and encourage proactive planning.
Who Can Join and How to Get Involved
The SHARE program is currently seeking Black American individuals aged 50 or older who are experiencing memory changes or have been diagnosed with a memory condition. A key requirement is that a family member or friend who provides current or future assistance must also participate in the study. To ensure accessibility, all sessions for the SHARE program will be conducted virtually.
The Benjamin Rose Institute on Aging emphasizes open discussion around dementia. As one SHARE Counselor noted to News 5 Cleveland, the sessions foster “very open and honest conversations” where “each person has permission to care for themselves, and the person who has dementia is confident that their care partner will make good decisions down the road.”
