DEARBORN — COVID-19 has been a difficult ordeal for Sylvana Berry, 24, and her family. Berry is extremely close to and has been directly involved in the care of her grandmother, Samira Baghdadi, who has Alzheimer’s Disease.
Baghdadi migrated to the U.S. in 1976 with her husband and six children, escaping from the Lebanese Civil War. She ran a resale shop in Detroit with her family.
Things changed for the large but tight-knit family once they learned their beloved matriarch was having trouble remembering things. Back in 2007, it was Berry and her sister, Selena, who noticed changes in their grandmother, like when she would get lost on her way to her house. Once Baghdadi drove the wrong way in traffic, the family couldn’t ignore that something was afoot.
Though the family decided long ago they would take of Baghdadi’s daily needs, COVID-19 has added a complex component to that care management. Baghdadi’s story offers a look into the way dementia and cognitive diseases affect the strong bonds and familial, social networks that many Arab Americans enjoy in Metro Detroit.
About 6 million people in the U.S. live with the Alzheimer’s disease, including many Arab Americans.
Baghdadi’s Alzheimer’s disease diagnosis has turned her family into a sort of extended care network. Berry and her parents live a block down from the house Baghdadi lives in with Berry’s uncle in Sterling Heights.
“When COVID-19 hit, we had to quarantine her in her house,” said Berry, who was used to seeing her grandmother on a regular basis up until COVID-19. “No one was allowed in, no one was allowed out. My uncle was the main caregiver during that time. It was extremely painful going a whole month without (physically) being with my grandmother.”
“We would cook food, drop it off at uncle’s place, and literally communicate with her through the window,” Berry added. “But Tata is not aware of her surroundings, and its not like she can talk to us through the window or wave at us. The only connection we have with her is when we hug and when we kiss her; when we actually touch her.”
Berry and her family got tested, quarantined for an appropriate amount of time and were finally able to be around her. But then Berry’s parents’ business was deemed essential and they had to get back to work. The family had to modify Baghdadi’s care once again.
My grandmother means everything to me. If it wasn’t for her and my grandfather, we wouldn’t be in this country; our family wouldn’t exist — Sylvana Berry
That family has to take extra precautions around Baghdadi, including social distancing indoors. They’ve taken to kissing her feet as its the furthest point away from her mouth. The family has no choice but to make contact with Baghdadi, however, as they have to monitor her vitals to get a sense of her state, which is not something she can truly vocalize herself.
“My grandmother means everything to me,” Berry said. “If it wasn’t for her and my grandfather, we wouldn’t be in this country; our family wouldn’t exist.”
Like many multi-generational families with elderly immigrant members, Baghdadi aids in strengthening cognitive and experiential bonds to Lebanon for her children and grandchildren. In fact, as Baghdadi’s short term recall began to decline, her memories of her birth country became that more vivid.
“Lebanon is all she would talk about at the onset of her condition,” Berry said. “She would often reference it as her home, even though she had lived and raised a family in Michigan for decades.”
Long term care, cultural divides: A COVID-19 tragedy
The names of subjects in this part of the article have been omitted by request
A Dearborn Heights resident spoke about her elderly mother, who was diagnosed with dementia eight years ago, when her family noticed typical signs of memory decline. For the last few years, the mother had been admitted into a few different nursing and rehabilitation centers.
The mother had been on a respirator and feeding tube since 2017 at a long term care center, when COVID-19 hit. Before the difficulties and challenges of the pandemic, however, the resident already had problems finding the right rehabilitation center for her mother.
The (local Arab American) community needs to come together to create its own nursing and longterm care center. Our families have certain cultural and religious concerns that have to be met — Dearborn Heights resident
“We had bad experiences at a few rehabilitation and nursing centers in our area,” the resident said. “We finally settled on one in Detroit where we still had to monitor her care 24/7 to ensure she was comfortable.”
“The (local Arab American) community needs to come together to create its own nursing and long term care center. Our families have certain cultural and religious concerns that have to be met. Our experience with these centers is that if we don’t take care of our own people, no one else will.”
Of course, COVID-19 in Wayne County amped up these concerns. Hospital systems in Southeast Michigan became quickly overwhelmed, and long term care facilities had to initiate lockdowns on patient visitations.
The resident’s past experiences, and stories of elder abuse and neglect, added to the difficulty of her continued care for her mother. Her interactions with her mother were down to five minutes over FaceTime for a difficult three months.
It wasn’t until the mother contracted non COVID-19 related pneumonia and had to be transported to a hospital that her family was finally reunited with her. Tragically, the mother stayed at the hospital until she passed away in late July.
Strong social capital
In the above stories, elderly family members provided a connection to Arabic culture to those generations that came up in the U.S. and were used to her accounts and experience of Lebanon.
Many Arab American elders enjoy strong social links with family and the larger community in Metro Detroit that keep these cultural bonds alive. But researchers have found these social relations are important for cognitive health among the elderly, Arab American or not.
“Though we still have not yet had the opportunity to examine links between social relations and cognitive health among Arab Americans, we do know from our research that Arab Americans report social relations characteristics that may protect them from dementia,” said Kristine Ajrouch, a leading researcher in aging and dementia among Arab Americans.
Ajrouch is one of three directors at the Michigan Center for Contextual Factors in Alzheimer’s Disease (MCCFAD). Her works brings to light social and economic factors that contribute to mental health among elders.
Ajrouch has utilized the category of “social capital” to examine the link between these social interactions and long term cognitive and mental health.
“In my research, social capital usually refers to social relationships,” Ajrouch said. “In other words, with how many people do you have relationships with? Is it mostly family? Or friends, too? How frequent do you have contact and are you geographically close to your network? Are your relationships positive, negative or both?”
Though dementia and Alzheimer’s disease is still a reality in the Arab American community, even with its increased social capital, a good social network may go a long way in ensuring better prospects for lasting cognitive health
Ajrouch said Arab Americans report more frequent contact with their social network on average than Blacks or Whites in the Metro Detroit area. These social relations have been dramatically affected by the COVID-19 pandemic, even when those relations are as strong as the ones Arab Americans enjoy.
“Even though social networks of Arab Americans do not appear to be any larger than what Whites report, Arab Americans do report a significantly larger proportion of their networks (50 percent as opposed to 40 percent) who are so close they can’t imagine living life without them,” Ajrouch added.
Though dementia and Alzheimer’s disease is still a reality in the Arab American community, even with its increased social capital, a good social network may go a long way in ensuring better prospects for lasting cognitive health.
Ajrouch and her team of experts at MCCFAD often engage the community in frank discussions about dementia, cognitive decline, caretaking and even stigmas associated with diseases of the mind. Recently MCCFAD conducted an online community event, with experts discussing issues related to dementia caretaking and COVID-19 (see below).
Experts know that even though there is no cure for Alzheimer’s disease, there are ways to lower the risk and manage symptoms. Curbing loneliness and depression, and building strong social bonds, is one of these ways.
Above: Tips from MCCFAD experts about providing care to a family member with Alzheimer’s disease during Covid 19.
If you or someone you know would like to share their experience caring for elderly family members during COVID-19, please reach out to the author of this article at firstname.lastname@example.org
This article was written with the support of a journalism fellowship from the Gerontological Society of America, Journalists Network on Generations and the Retirement Research Foundation.