A Hunger For Knowledge About Dementia In Minnesota’s African Immigrant Communities

by SHEILA MULROONEY ELDRED.

When he first noticed it, Wynfred Russell chalked up his uncle’s unusual behavior to old age: the 70-year-old lost his keys, forgot to pay bills, took hours to get to the airport after missing the exit. Finally, after police found him wandering away from home after midnight one night, he was diagnosed with dementia.

Personal caregiving is highly valued in their native Liberia, Russell said, but few Liberian immigrants living in the U.S. have the resources to care for elderly relatives. Without culturally-specific care in Minnesota, Russell’s family decided to send the uncle back to Liberia after 16 years here. In his village, the family could rest assured that he could live at home amidst plenty of family and friends.

“He was living with me and another uncle here, but we didn’t have the time,” Russell said. “So we sent him back to his country where the support system is much more communal, where everyone comes to visit you and keep you company.”

Many African immigrants living in Minnesota face similar decisions for their older relatives, said Russell and University of Minnesota public health researcher Manka Nkimbeng. In fact, more older African immigrants are living in Minnesota than ever — and while some still choose to move back to their home country as they age, many stay here.

Five years ago, Nkimbeng set out to study dementia in African immigrant communities. While her work focuses on African communities, other immigrant communities face similar challenges, she said. Through focus groups with community members, she learned that they were eager for accurate information on the disease. A book with accurate information and resources, they said, would help correct misconceptions and myths, and should help connect them to services.

Nkimberg’s Immigrant Memory Collaborative and African Career, Education and Resources (ACER) took the project on with a $25,000 grant from the University of Minnesota that funded the needs assessment and $25,000 from Johns Hopkins University that funded the creation of the booklet. They recently completed and launched the final project with about 200 copies. They’re hoping to secure additional funding for more booklets that could be distributed to immigrant groups around Minnesota, the U.S. and in Africa.

Myths and Misconceptions

“Many African immigrants had never heard the word ‘dementia,’” Nkimbeng said. Mental health and cognitive issues are not usually openly discussed or well understood in African immigrant communities, she said, so some view dementia from a spiritual perspective — as a curse, as witchcraft, or as something that Allah or God made happen.

Both Russell and Nelima Munene, executive director of ACER, count themselves among those who didn’t know much about dementia prior to the project.

“I knew what Alzheimer’s was, but I had no in-depth knowledge of symptoms,” said Russell, who founded ACER in 2008. “A lot of folks in our community, when folks are exhibiting symptoms of someone with dementia, call them crazy, or say that they lost their mind….we didn’t have the tools or the information to even describe it or understand what it is.”

Some of the things Munene had thought about dementia were not accurate, she said: “I always assumed that dementia was an inevitable disease as you grow old. I didn’t know it was preventable. I did not know that early detection was important and the possibility of treatment.”

In addition to memory loss, common symptoms of dementia include changes in mood, behavior, and personality. They also include disorientation, struggling to perform familiar tasks, trouble with reading, writing or speaking and difficulty making decisions.

The book is part of the African Immigrant Dementia Education Project, which conducts information sessions at hubs such as community centers, mosques, and churches. The project involves an advisory board of community members, including some with dementia diagnoses themselves. Advisory board members suggested a book would be helpful for people who wanted more than “the basics about the basics” offered at information sessions. They determined what questions should be explored and how the research would be carried out, Munene said.

“With each step, the community has pushed us further to keep doing the work and evolving in the direction that the community members would like to see it grow,” Munene said. “It is the perfect example of those who are impacted knowing best how to address the issues that impact them.”

The 24-page booklet is a meatier version of the presentations the group gives, Nkimbeng said.

“In the education program we have, we do not talk about Alzheimers or go into details,” Nkimbeng said, “but some people want to know exactly what happens in the brain” and how to get more resources. So the booklet delves into misconceptions, warning signs, risk factors, prevention, and diagnosis. In addition, it offers resources for caregivers, including those facing fatigue and burnout.

African immigrants are not monolithic, Nkimbeng said, so the book aims at values common among communities, such as respect for parents and older adults, and care in an in-home setting.

She’s hopeful that the information will help debunk myths and remove stigma around dementia.

It’s eye-opening for people who have the condition and their family or caregivers, but didn’t realize what it was, Russell said.

Options for Care in Minnesota

After Russell’s uncle moved back to Liberia, he was able to live happily in his own home for two years until his death. But Russell hopes other African immigrant families in Minnesota won’t have to make the same decision.

“As an immigrant community, we are still navigating a foreign system,” Mukene said. “Our greatest challenge right now is how we connect the findings of our research to real and tangible resources such as culturally appropriate memory care facilities.”

The need for such residential facilities far outweighs the availability in Minnesota, but some day programs cater to immigrant communities. It’s also important for caregivers to get support; Nkimbeng is currently working on a new study on the topic.

Older people with dementia, and their families, can live fulfilling lives, Russell said. But many caregivers grow frustrated without up-to-date research and tools. Sometimes a simple adjustment in a daily routine can change the trajectory for a patient.

­­­­“Dementia is a family disease,” Mukene said. “It is such a huge load to carry in isolation.”

The team is lobbying legislators for more funding to translate the book into languages besides English and increase distribution.

“We have the talent to do this in our community,” said Russell, pointing out that the project is carried out by African immigrants. “It just needs to be supported.”

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See Original Article at Sahan Journal