A hunger for knowledge about dementia among Minnesota’s African immigrants

Wynfred Russell at first 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. But after police found him wandering away from home one night, he was diagnosed with dementia.

Without culturally specific care in Minnesota, the family decided to send their uncle back after 16 years to his village in Liberia, “where the support system is much more communal, where everyone comes to visit you and keep you company,” Russell said.

Many African immigrants living in Minnesota face similar decisions for their older relatives, according to Russell and University of Minnesota public health researcher Manka Nkimbeng. 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.

The Immigrant Memory Collaborative, a partnership between the U’s School of Public Health and African Career, Education and Resources Inc. (ACER), has created a booklet offering information and resources on dementia for immigrant groups. It has printed about 200 copies with the help of $25,000 grants from the U and Johns Hopkins University, and hopes to secure additional funding for more booklets for immigrant groups in Minnesota, the U.S. and Africa.

The booklet is part of the African Immigrant Dementia Education Project, which conducts information sessions at community centers, mosques and churches. An advisory board of community members, including some who have been diagnosed with dementia themselves, suggested a book for people who wanted more than “the basics about the basics” offered at information sessions, said Nelima Munene, ACER’s executive director.

“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,” she said.

When Nkimbeng set out five years ago to study dementia among African immigrants, many had never even heard the word, she 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 Munene count themselves among those who didn’t know much about dementia prior to the project.

“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,” said Russell, who founded ACER in 2008. “We didn’t have the tools or the information to even describe it or understand what it is.”

Some of the things Munene had believed about dementia were not accurate, she said.

“I always assumed that dementia was an inevitable disease as you grow old,” she said. “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, difficulty in making decisions and trouble with reading, writing or speaking.

The 24-page booklet is a meatier version of the presentations that the African Immigrant Dementia Education Project gives, Nkimbeng said. “In the education program we have, we do not talk about Alzheimer’s or go into details,” she said.

The booklet delves into misconceptions, warning signs, risk factors, prevention and diagnosis. It also 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: respect for parents and older adults and care in an in-home setting. She hopes the information will help debunk myths and remove the stigma surrounding dementia.

After Russell’s uncle moved back to Liberia, he lived 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,” Munene 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, though some day programs cater to immigrant communities. It’s also important for caregivers to get support; 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 booklet into languages besides English and increase distribution. “We have the talent to do this in our community,” said Russell. “It just needs to be supported.”

For information on how to receive a copy of the booklet, email africanmem2021@umn.edu.

About the partnership

This story comes to you from Sahan Journal, a nonprofit newsroom dedicated to covering Minnesota’s immigrants and communities of color. Sign up for a free newsletter to receive Sahan’s stories in your inbox.