The slightest noise kept Sarah Paul awake most nights. She was exhausted from caring for her 92-year-old mother, who had been diagnosed with dementia, a symptom of Alzheimer’s disease. Symptoms of Alzheimer’s disease occur at twice the rate in black people than in the overall population.
“I hear her coughing. I hear this and I hear that,” Paul said. “That really hit home.”
Even in the midst of a pandemic, that fatigue carried over into daytime chores. Paul did the laundry and prepared the meals. Her mother was bedridden and suffered from seizures, so she pureed everything. Like many caregivers, especially Black caregivers, she doesn’t know what’s going to happen from one day to the next as she struggles to handle the welfare of a loved one with dementia almost single-handedly. did.
As the Alzheimer’s disease crisis deepens, Black families face two challenges. Even though they are far more likely to contract the disease, they are less likely than many other families to be able to afford outside care for their affected loved ones.
That’s why Rutgers-Newark has launched a Dementia Caregiver Support Group in the Newark area for Black families in need, including work at Paul’s church, Messiah Baptist, in East Orange, New Jersey. It was. These support groups and educational dinners for dementia caregivers are sponsored by the Aging and Brain Health Alliance at Rutgers University-Newark, led by Dr. Mark A. Gluck of the Center for Molecular and Behavioral Neuroscience.
In addition to providing support, Alliance researchers hope participants in these caregiver programs will also be able to address critical knowledge gaps. The goal is to identify new genes for Alzheimer’s disease and help engage enough Black families to advance our understanding of the genetics of Alzheimer’s disease in people of African descent.
Gluck and colleagues at Rutgers University-Newark reached out to local Black families who have or have had a family member with dementia as part of a national study funded by the National Institute on Aging and led by Columbia University and Indiana University. I started taking it. (NIA).
Black people are a group that has traditionally been underrepresented in research studies, but despite their high prevalence of the disease, not enough is known about why they are more susceptible to the disease.
“We need to better understand the social, environmental, and lifestyle factors that influence Alzheimer’s disease risk in Black communities, as well as genetic risk factors,” Gluck said. “That’s the real purpose of this new study with Indiana University and Columbia University, because many of the future treatments for Alzheimer’s disease may depend, among other things, on which genetic risk factors a person has. Because there is.”
Persuading African Americans to participate in this and other studies stems from the relationships Rutgers-Newark University has built locally with church and community leaders over more than a decade. In the meantime, Gluck said his team aims to bring value to the community by creating programs that bring people together for social events where they can learn about brain health and how to reduce their risk of Alzheimer’s disease. He said he was there.
“We want lifelong relationships,” said Gluck, who has received funding from the NIA for two additional studies on aging and Alzheimer’s disease in African Americans. The latest award this year explores the link between prevention and exercise. Another project launched in 2016, known as Pathways to Healthy Aging in African Americans, enrolls healthy adults aged 60 and older to protect against future cognitive decline and Alzheimer’s disease. We conduct follow-up studies every two years to better understand what factors promote resilience.
Glenda Wright, a community brain health educator with the Rutgers-Newark Aging Brain Health Alliance, whose 87-year-old sister has Alzheimer’s disease, talks about the disease, dementia, and the role older adults play in health. I believe in transparency when speaking. Dolores Hammons, another brain health educator, feels similarly.
“I told them that I’m African American. I’m not going to tell them to do anything that I think will hurt them,” she says.
While public health education is a central goal of the Alliance’s community programs, recruiting people to participate in research is an important part of its broader mission.
Wright, who is also a caregiver for her sister who has Alzheimer’s disease, knows that the work she does with Gluck can minimize the risk for herself and other family members affected by the disease. That’s why she’s now encouraging them to participate in Rutgers’ research. and a national survey. During her presentation, she tells people, in a fun and serious way, to eat healthy, exercise, and get a good night’s rest.
Evelyn Morton, 86, of East Orange, knows she’s contributing to science and longevity. Morton, whose arthritis has slowed his mobility, walks the building’s hallways for exercise and goes to bed earlier instead of watching late-night television.
Alzheimer’s disease support groups offer members an opportunity to share feelings they may not be able to share with others, and are also a place to get information about Alzheimer’s disease and how to cope as a caregiver.
It all starts with dinner and conversation at events such as meetings planned for caregivers at Messiah Baptist Church. Relatives with dementia will receive guidance from Alicia O’Connor, recruitment, outreach and education supervisor at the Cognitive Research Center of New Jersey (CRCNJ), which conducts clinical trials for Alzheimer’s disease and cognitive disorders.
Mr O’Connor said the days can be long and difficult for carers and they need to know they are not alone. “I always want to remind people that support is out there and it’s okay to ask for support.”
Part of that is knowing what to expect and what to do when dementia progresses. At such times, Mr. O’Connor suggested that caregivers inject laughter and joy into their loved ones if possible. But just as important, she said, her caregivers have to take care of themselves.
“Caregivers are often so worried about caring for their loved one that they don’t take care of themselves,” she says.
Wright experienced this firsthand while caring for her younger sister.
“If you’re not careful, you can be on the verge of a breakdown. It does something to your psyche,” she said.
Paul is in the same position. It’s been two years since her mother called her name. At the nursing home, she holds her mother’s hand and occasionally smiles from the woman who once paid her bills by singing in the choir.
“She seems to understand who I am,” Paul said. “I understand that’s part of the illness. It took me a while to deal with it.”
She knows that when her family comes over, she will have something she didn’t have: someone to turn to when she’s in trouble. “She would have been saved if someone had asked her questions,” she said. “I think that helped me.”
