The Alzheimer’s Association has designated June 21 as “The Longest Day,” a sunrise-to-sunset event to boost awareness of and research into the devastating disease and to support services for people and their families dealing with Alzheimer’s. Chicagoans will see 36 downtown buildings illuminated in purple glows in support of the event, which ties into the association’s official Alzheimer’s & Brain Awareness Month campaign.

One local family has faced this devastating illness with strength, passion, endurance and heartbreak. Now they want to help others cope.

Darius McKinney says his family relied heavily on the Alzheimer’s Association (alzheimers-illinois.org) to find vitally important support networks and a part-time caregiver for his late father, William Hayes McKinney Sr.

The elder McKinney died seven years ago at age 74 — a decade after he had retired as a city Parks and Recreation worker in Detroit and started showing the first symptoms of Alzheimer’s. He went from being the rock of the family — a Korean War veteran, solid wage-earner and former high-school football star — to having no memory of his family and requiring assistance to eat, bathe and go to the bathroom.

“My dad was the strongest man I ever met in my life,” said Darius McKinney, a state contractual worker who helps people with severe mental illness return to the workforce as part of the Thresholds (www.thresholds.org) non-profit mental-health advocacy program.

“People don’t realize how much Alzheimer’s does to a family as far as the care that goes into it — all the things that people take for granted as natural and normal are neither,” says Darius McKinney, whose father succumbed to Alzheimer’s Disease. | Ashlee Rezin/Sun-Times

“People don’t realize how much Alzheimer’s does to a family as far as the care that goes into it — all the things that people take for granted as natural and normal are neither,” he said. “You truly have a baby again in the family – except that at least a baby can recognize you by your face and smile at you.”

The McKinney family, including Darius’ mother Verna Mae, his daughter Taylor, and his sister Charmie, a special-education teacher in Southwest suburban Steger, continue to support efforts to raise funds for Alzheimer’s research and an eventual cure. Taylor participates in the Chicago Walk to End Alzheimer’s (to be held this year on Sept. 24 at Montrose Harbor), and Darius encourages everyone to volunteer, donate money or resources, and otherwise help others cope.

“Everyone is, in some way, affected by this disease,” Darius said. “Someone has a loved one, someone they work with, go to school with or come in contact with who is dealing with Alzheimer’s in some way, even if they haven’t disclosed it.”

The Alzheimer’s Association’s Greater Illinois chapter, headquartered in Chicago, operates a free 24-hour help line seven days a week at 1-800-272-3900, staffed by counselors and social workers.

Melissa Tucker, director of the Greater Illinois chapter’s helpline and support services, said the round-the-clock operation is important because Alzheimer’s “is a 24-hour situation.”

“If this is the first time your relative doesn’t recognize you and it’s the middle of the night, you need emotional support,” she said. “People have to become willing to ask for and get help. It’s not a sprint. It’s a marathon.”

The local Alzheimer’s chapter meets with families in person or talks by phone to prepare plans to care for the Alzheimer’s sufferer, Tucker said.
Families also may go to www.Alz.org/Illinois and click on “support groups” to search by county or ZIP code for others dealing with the disease. Support group listings and other resources can also be mailed to helpline callers at 1-800-272-3900.

Support groups exist for both caregivers and for people with Alzheimer’s disease.

“People with dementia who participate in early-stage support programs get a lot out of sharing their experience with others, getting involved in advocacy for funding for research, for support and for a cure, and to raise awareness and decrease the stigma,” Tucker said.

The elder McKinney’s symptoms started with memory loss, such as misplacing keys and forgetting where he had parked the car, his son said.

That’s consistent with the most common initial symptoms that involve memory, such as repeating oneself, losing things or forgetting recent conversations or events, said Dr. Rita Shapiro, a clinical associate professor at the University of Illinois at Chicago’s Department of Neurology and Rehabilitation and a neurologist at the UIC Memory and Aging Clinic and the Jesse Brown Veterans Administration Medical Center.

People may see minor lapses in recall with aging, but it is important for them to have a medical evaluation early if they or their families are noticing progressive changes in memory, language or any other area of thinking or functioning, Shapiro said.

“Sometimes the problem can be explained by an adverse effect of a medication, vitamin or thyroid deficiency or another neurological disorder,” she said. “Getting an accurate diagnosis early helps with treatment, planning and decisions about entering clinical trials.”

Indeed, the latest research shows promise that either a pill or an antibody injection could prevent Alzheimer’s in older people who have amyloid in their brains, said Dr. Paul Aisen, director of the Alzheimer’s Therapeutic Research Institute in San Diego and a neurology professor at the University of Southern California. Amyloid, a toxic protein that forms sticky plaques, is the biggest indicator of Alzheimer’s. Such medications could receive regulatory approval by 2025, Aisen said.

That’s especially important because the research shows there could be twice as many people in the United States with Alzheimer’s than previously believed, and it is lurking inside people who have yet to show symptoms. The research, published June 13 in The Journal of the American Medical Association, followed 445 people for as long as 10 years.

One in three people over 65 has elevated amyloid in the brain, Aisen said, and the study indicates that most people with elevated amyloid will progress to symptomatic Alzheimer’s within 10 years.  If Alzheimer’s prevalence estimates were to include this “preclinical stage” before symptoms arise, the number of those affected would more than double from the current estimate of 5.4 million Americans, according to the study.

Aisen was the senior author of the JAMA report with lead author Michael Donohue, an associate professor of neurology at the USC Alzheimer’s Therapeutic Research Institute.

“To have the greatest impact on the disease, we need to intervene against amyloid, the basic molecular cause, as early as possible,” Aisen said. “The reason many promising drug treatments have failed to date is because they intervened at the end-stage of the disease when it’s too late. The time to intervene is when the brain is still functioning well—when people are asymptomatic.”

The Chicago Walk to End Alzheimer’s takes place Sept. 24 at Montrose Harbor. | THINKSTOCKIMAGES.COM

The University of Southern California research is among hundreds of trials worldwide aimed at potential treatments to stop the kind of progression that the elder McKinney experienced, deteriorating from forgetfulness to knowing no one within six years.

Darius McKinney said his father’s second-stage symptoms included “having good days and bad days,” with the bad days marked by orneriness, aggression, nervousness and even being disoriented, with the forgetfulness accelerating.

RESOURCES:
• 10 warning signs http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp
National Institute on Aging-funded Alzheimer’s Disease Centers  lists contact information for the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern Medicine (www.brain.northwestern.edu) as well as Rush Alzheimer’s Disease Center (www.rush.edu/services/alzheimers-disease-center)
• The National Institute of Aging ‘s ADEAR, the Alzheimer’s Disease Education and Resource Center (www.nia.nih.gov/alzheimers)
• U.S. Department of Veterans Affairs’ health care and benefits (www.va.gov). Veterans are eligible to receive both medical care and dementia-related services through their local VA centers, including three in the Chicago area and several community-based outpatient clinics, including one in Crown Point, Ind. (Phone:  1-844-MyVA311 or 1-844-698-2311)
• VA geriatrics and dementia care www.va.gov/GERIATRICS/Alzheimers_and_Dementia_Care.asp

Sandra Guy is a local freelance writer.