A local program that for decades has helped early-stage dementia patients have a say in their future care is recruiting African American families to participate.

The free SHARE program, developed from research at Cleveland’s Benjamin Rose Institute on Aging, is a six-week course in which counselors help people experiencing memory loss plan for the future alongside their caregiver – whether that’s a spouse, child or friend. The process gives people with dementia a voice in decisions that might need to be made later on when memory loss worsens, choices such as which nursing facilities a family can afford and the patient would accept. 

SHARE historically served mostly white families, said Donna Salaam, a research assistant with Benjamin Rose. That’s why the institute recently adjusted who could participate in the hopes of adapting the program to better serve African American families. Now, Benjamin Rose is recruiting those families to participate in a National Institute of Aging study to see whether the updated program is effective. 

Black adults over 65 have higher rates of Alzheimer’s disease, a type of dementia, than white adults of the same age, studies have found. But Salaam said the disease still carries a lot of stigma, and there’s hesitance among African American people to discuss the diagnosis.

“That’s probably the biggest message we’re trying to send out: You know, it’s OK to talk about dementia,” Salaam said. “…So that they don’t have to suffer in silence, basically.”

Salaam is recruiting 120 African American families in total for the study, which will split participants into two groups. One will participate in the entire six-week SHARE session, and another will attend a one-week session. The goal? To find out whether the SHARE program improves the quality of life for people with dementia and their caregivers.  

“At the end of the day, are these families in a better state after they complete the SHARE program?” Salaam said. “Are they less depressed? … Are they communicating better? Are they more connected to the resources?”

Cuyahoga County has the highest share of Alzheimer’s disease among adults over 65 in Ohio at 13.4%, Axios Cleveland reported in 2023.

SHARE Program adapts to serve African Americans

The SHARE program has existed for more than two decades, originally developed by the Benjamin Rose Institute. Since then, memory care centers and community health organizations around the country have adopted the program to use in their own communities. 

But studies seeking to measure its effectiveness at improving the lives of people with dementia primarily looked at its impact on white people. One study from 2017 found the SHARE program increased participants’ use of community support services such as counseling or support groups and improved relationships with caregivers. But 88% of the people with dementia who participated were white. 

Salaam said Benjamin Rose wanted to adapt the program to fit Black families’ needs. It recruited the opinions of Black community members, people with dementia, professionals and care givers.

One recent change: the SHARE program is now open to people with memory loss who don’t necessarily have a dementia diagnosis. That opens it up to those who may be reluctant to bring up their memory loss to their doctor – or whose concerns have been dismissed.

“Some doctors are saying, well, ‘Hey, I’m gonna make a referral to a gerontologist,’” Salaam said. “Others are saying, you know, ‘It’s older age.’”

The program is also now training its counselors in conflict resolution to work through strained family relationships, Salaam said. 

Joining the program

To join the study, the person living with dementia or memory loss must be over 50 years old and African American.

Potential participants can live anywhere in the country: The sessions all take place virtually over a computer or tablet.  

Recruitment will run through the fall. 

If interested, reach out to Salaam at share4aa@benrose.org or 216-373-1747.