This story is part five of an AP series examining the health disparities experienced by Black Americans across a lifetime.<\/p>\n\n\n\n
FREDERICKSBURG, Va. \u2013 Constance Guthrie is not yet dead, but her daughter has begun to plan her funeral.<\/p>\n\n\n\n
It will be, Jessica Guthrie says, in a Black-owned funeral home, with the songs of her ancestors. She envisions a celebration of her mother\u2019s life, not a tragic recitation of her long decline.<\/p>\n\n\n\n
As it should be. Constance has lived 74 years, many of them good, as a Black woman, a mother, educator and businesswoman.<\/p>\n\n\n\n
But she will die of Alzheimer\u2019s disease, a scourge of Black Americans that threatens to grow far worse in coming decades.<\/p>\n\n\n\n
Black people are more likely to develop Alzheimer\u2019s than white people in the United States. They are less likely to be correctly diagnosed, and their families often struggle to get treatment from a medical system filled with bias against them.<\/p>\n\n\n\n
About 14% of Black people in America over the age of 65 have Alzheimer\u2019s, compared with 10% of white people, according to the Centers for Disease Control and Prevention. The disparity is likely even more, because many Black people aren\u2019t correctly diagnosed.<\/p>\n\n\n\n
And by 2060, cases are expected to increase fourfold\u2002<\/a>among Black Americans.<\/p>\n\n\n\n Black people are more likely to develop Alzheimer\u2019s than white people in the United States. They are less likely to be correctly diagnosed, and their families often struggle to get treatment from a medical system filled with bias against them.<\/p>\n\n\n\n About 14% of Black people in America over the age of 65 have Alzheimer\u2019s, compared with 10% of white people, according to the Centers for Disease Control and Prevention. The disparity is likely even more, because many Black people aren\u2019t correctly diagnosed.<\/p>\n\n\n\n And by 2060, cases are expected to increase fourfold\u2002<\/a>among Black Americans.<\/p>\n\n\n\n While some risk factors may differ by race, the large disparities among racial groups can\u2019t be explained just by genetics.<\/p>\n\n\n\n The problems start much earlier in life. Health conditions like heart disease and diabetes are known risk factors. Both are more common among Black populations, because of where they live in relation to polluting industries, lack of healthy food choices, and other factors. Depression, high blood pressure, obesity and chronic stress can also raise the likelihood of developing Alzheimer\u2019s. So can poverty.<\/p>\n\n\n\n Across the board, Black people don\u2019t receive the same quality of health care throughout life as white people.<\/p>\n\n\n\n So they don\u2019t get high quality treatment \u2014 or any treatment \u2014 for all those conditions that are risk factors. Then, at the end, they\u2019re less likely to get medication to ease the symptoms of Alzheimer\u2019s and dementia-related disorders.<\/p>\n\n\n\n And there\u2019s the insidious impact of a life experiencing racism.<\/p>\n\n\n\n Racism is trauma that can lead to increased stress, which can in turn cause health problems like inflammation, which is a risk factor for cognitive decline, said Dr. Carl V. Hill, chief diversity, equity and inclusion officer of the Alzheimer\u2019s Association.<\/p>\n\n\n\n \u201cBut because of this structural racism that creates poor access to health, medication, housing, those who experience racism and discrimination are not provided a pathway to lower their risk,\u201d Hill said.<\/p>\n\n\n\n It is, he said, \u201ca one-two punch.\u201d<\/p>\n\n\n\n For Jessica, it has meant the final years of her mother\u2019s life have been filled not with peace, but heartache and frustration, as she navigates doctors who don\u2019t believe her when she says her mom is suffering. In the slow, plodding walk that is her mother\u2019s final years, she has few health care partners.<\/p>\n\n\n\n \u201cIt has been pervasive across multiple doctors, emergency rooms and hospital doctors,\u201d Jessica said. \u201cNot being listened to, not believed, not given the full treatment.\u201d<\/p>\n\n\n\n \u201cTo be a caregiver of someone living with Alzheimer\u2019s is that you watch your loved one die every day. I\u2019ve been grieving my mom for seven years.\u201d<\/p>\n\n\n\n The salon was called \u201cHair by Connie,\u201d and for 18 years it was the place to go in Alexandria, Virginia, if you were a Black woman who wanted to look her best. Reigning over the shop was its owner, Constance Guthrie.<\/p>\n\n\n\n She traveled the world, attending hair shows. She opened her salon to fashion shows like the \u201cTall, Full and Sassy\u201d event advertised in an old flyer she now keeps in a box of mementos. She donned dazzling, colorful and flamboyant outfits to match her larger-than-life personality.<\/p>\n\n\n\n In the 1990s, she made the difficult decision to move and close her beloved salon. She bought a home in Fredericksburg so her daughter could attend the best schools, and later became a paraprofessional in the local school district, which allowed her to have a schedule where she never missed oratorical contests or choir recitals.<\/p>\n\n\n\n She was always there for Jessica, who is her only child. They often stayed up into the wee hours of the night working on school projects together. Despite meager means, Jessica grew up surrounded by encouragement and love.<\/p>\n\n\n\n \u201cMy mother gave up everything to make sure that I had the greatest support, the greatest opportunities,\u201d Jessica Guthrie recalled. \u201cWe were like two peas in a pod.\u201d<\/p>\n\n\n\n Her mother\u2019s hard work paid off. Jessica became a teacher and later moved to Dallas to build her own life and chase her dreams, where she was a successful chief program officer for an education service.<\/p>\n\n\n\n Then, seven years ago, Constance began her descent into dementia.<\/p>\n\n\n\n She started to forget simple things, like where her keys were. She lost her way coming home from work on a familiar route she traveled almost daily for 18 years. She got into a car accident.<\/p>\n\n\n\n The frequency of troubling incidents began to increase, worrying Jessica who was still hundreds of miles away in Texas.<\/p>\n\n\n\n They tried to use Post-It notes to remind Constance of daily tasks. Some of the colorful notes still line the walls of the family\u2019s home.<\/p>\n\n\n\n For a woman who had grown accustomed to being so independent, it was hard for her to accept that she needed help.<\/p>\n\n\n\n \u201cShe spent so long trying to hide it,\u201d Jessica said. \u201cLike, \u2018Oh, I\u2019m good, I\u2019m fine. I just forgot.\u2019 But you could tell that a lot of her anxiety and stress was because she was trying to cover this up from other people.\u201d<\/p>\n\n\n\n She began to wander around her neighborhood. Jessica and nearby loved ones tried to bolt the door to prevent her from wandering.<\/p>\n\n\n\n A neurologist confirmed she was suffering early cognitive decline and that it was likely Alzheimer\u2019s.<\/p>\n\n\n\n She was just 66 when she was diagnosed.<\/p>\n\n\n\n Soon after, Jessica made the tough decision to pack up and leave Dallas behind to care for her mother full time. She recently began working remotely again after taking an extended leave of absence to care for her mother.<\/p>\n\n\n\n Constance never had diabetes nor high blood pressure \u2014 which are common risk factors. She was fairly active and healthy, and would often walk around her neighborhood. But in 2015, Constance suffered a transient ischaemic attack, or a \u201cmini stroke,\u201d which is a brief disruption in the blood supply to part of the brain.<\/p>\n\n\n\n Jessica believes the mini stroke could have been caused in part by the heavy stress her mother endured at her job, where she worked for 18 years as a special education paraprofessional.<\/p>\n\n\n\n She also questions the role genetics played in her mother\u2019s diagnosis. Her mother\u2019s aunts are all living with the disease. Her mother\u2019s brother, who was a doctor, has started to experience cognitive decline.<\/p>\n\n\n\n Lost in her own mind, Constance can no longer testify to the difficulties she endured \u2014 as a mother, a Black entrepreneur running a business on her own.<\/p>\n\n\n\n But her daughter, Jessica, can attest to the struggles she\u2019s had, as a Black caregiver, trying to ensure that her mother receives appropriate care.<\/p>\n\n\n\n In 2018, her mother started pointing at her stomach, repeatedly, trying to tell her daughter she was in pain. Jessica took her to her primary care physician, who is white and brushed the concerns aside.<\/p>\n\n\n\n \u201cMy mother couldn\u2019t articulate that there was significant pain in the moment and the doctor of the practice basically said, \u2018Oh, well, you know, sometimes they just come in and put on a show and it seems like she\u2019s fine,\u2019\u201d Jessica said. \u201cThey asked, \u2018Are you sure she\u2019s in so much pain?\u2019\u201d<\/p>\n\n\n\n They sent her home without performing further diagnostic tests. But the pain persisted.<\/p>\n\n\n\n Jessica took her mother to the emergency room the next day and a Black male doctor ordered the necessary imaging. She needed emergency surgery to correct a painful, protruding hernia.<\/p>\n\n\n\n Then there was the time she took her mother to the emergency room for intense leg pain. She had arthritis in her knee but Jessica suspected something more serious.<\/p>\n\n\n\n The doctor told her she likely just needed rehab for her bad knee. Jessica advocated for more testing and it turned out Constance had a blood clot in her leg.<\/p>\n\n\n\n \u201cRacism is implicit and deeply rooted in the air that we breathe,\u201d said Jessica, who has started an Instagram account to chronicle her experiences.<\/p>\n\n\n\n The problems Black people face getting medical care are pervasive. Black people living with serious illnesses get less help managing pain and other symptoms, and they have worse communication with doctors, according to the Center to Advance Palliative Care.<\/a><\/p>\n\n\n\n Studies show they are\u2002less likely to receive<\/a> dementia-related medication that can help ease symptoms like hallucinations and depression that make the disease particularly terrifying for families.<\/p>\n\n\n\n Among non-white caregivers, half or more<\/a> say they have faced discrimination when navigating health care settings for their care recipient. Their top concern: Because of their race, providers or staff do not listen to them.<\/p>\n\n\n\n