“My uncle.” “My dad.” “My Grandfather.” “My Grandmother.” “Pat Bowlen.” “Everybody.” These are some of the answers that walkers proudly broadcast at the finish line when asked, “Who are you walking for?”
Between 8,000 and 10,000 people registered for the 25th Annual Alzheimer’s Association Walk to End Alzheimer’s at Denver City Park on Saturday, Sept. 20, including Team Super Bowlen, charged with raising funds in honor of Denver Broncos owner, Pat Bowlen. In July, his wife, Annabel Bowlen, announced that the man who has owned the Broncos for 30 years would be relinquishing control of the team to fight his battle with Alzheimer’s disease.
The news came on the heels of another high-profile announcement of a diagnosis of Alzheimer’s in June from popular restaurateur Barbara Smith, known as B. Smith. She is known for turning a successful modeling career into a series of cookbooks, decorating books and a syndicated television show, which she hosted, called “B. Smith with Style.” The 64-year-old was one of the first Black women to grace the cover of Mademoiselle Magazine in 1976.
During an interview on “60 Minutes” in June, she could not remember the year, the day or the month. However she displayed a positive spirit saying, “I’m going to do my best to make it work out for me, and for as many people that I can possibly help, too.”
Their announcements, while shocking, help to raise awareness and bring attention to Alzheimer’s, a progressive brain disease that cannot be cured.
Linda Mitchell, CEO of the Alzheimer’s Association of Colorado, says the annual event is “more than a walk. It is an experience for thousands of participants in Denver to learn about Alzheimer’s disease and how to get involved with this critical cause, from advocacy opportunities and clinical trial enrollment to support programs and services.”
The association is the premier source of information and support for more than 63,000 Coloradans with Alzheimer’s disease, their families and caregivers. According to the association, Alzheimer’s disease is a growing epidemic and the nation’s sixth-leading cause of death. As baby boomers age, the number of individuals living with Alzheimer’s disease will rapidly escalate, increasing well beyond today’s more than five million Americans to as many as 16 million by 2050.
Mitchell adds the people who participate in the walk for “very personal reasons. Some walk to support the cause and a vision of a world without Alzheimer’s disease, others are here to support someone living with the disease or honor someone they have lost to Alzheimer’s, and some people walk because they have Alzheimer’s disease.”
Raymond and Martina Frazier and their family participated in the walk in honor of Martina’s 74-year-old father who was diagnosed about six years ago. She says the family realized something wasn’t right when the former handyman couldn’t remember how to fix a door knob and would often get lost when driving.
“He could not remember where he was going,” says Martina, who travels regularly to New Mexico where her father is based to help her five sisters and mother care for him.
Like many families across the country, there were some in her family that were initially in denial when witnessing the symptoms. But on a trip to Colorado, it became clear. Martina says it hit “when they saw his reaction in our home. He didn’t know where he was. He was terrified and scared.” After that experience he was taken to the doctor in Colorado and diagnosed at stage four or five. He did return to New Mexico, but before the Frazier’s visited him there they consulted with the Alzheimer’s Association in Aurora to better understand the disease.
African Americans are about twice as likely as whites to have Alzheimer’s or another dementia, and Hispanics are one and a halftimes as likely, however, studies show that African Americans are less likely to have a diagnosis.
Rosalyn Reese, director of diversity and outreach, says, “Culturally speaking, both groups (African Americans and Hispanics) are likely to think Alzheimer’s disease is a normal part of aging. Consequently, ethnically diverse communities are generally diagnosed at a later stage of the disease process. Therefore, the greatest obstacle is educating people to understand the importance of early detection, to learn the 10 warning signs and talk to their doctor. Early detection matters.”
Reese, whose mother-in-law battled Alzheimer’s before passing in 2013, adds, “African Americans and Latinos are disproportionately affected by Alzheimer’s disease more than Caucasians due to higher incidences of heart disease, high blood pressure and diabetes.
When posed with the idea of putting him in some type of assisted living, Martina’s family was opposed. “We are Spanish people, we take care of our family,” she says.
It’s a charge that Roslyn Washington and her siblings stepped up to when their father was diagnosed with Alzheimer’s. Washington, who cares for her 93-year-old father, Thomas Washington, says it can be detrimental if you don’t have a good support system including friends, church and family. “I don’t know how one person could do this. If you don’t have someone every day you can’t rest assured your family members taken care of. (Knowing someone is there) takes burden off you in terms of worry,” she says.
“If we are not sharing information, we are not going to get past this stuff,” says Washington regarding African American’s tendency to keep sensitive matters such as a diagnosis of Alzheimer’s private.
Rogers, vice president of communications and marketing for the Colorado Chapter of the Alzheimer’s Association, says, “For some caregivers, the demands of care giving may cause declines in their own health. Forty-three percent of caregivers of people with Alzheimer’s disease and other dementias reported that the physical impact of care giving was high to very high.”
The Washington family started seeing the onset of the disease when their father was in his late 80s.” After retirement at 83 from Denver Public Schools, he was quite active, exercising every day. But when his children came to visit him they noticed he was moving things out in the hall. Washington says her father started “hallucinating, had slight paranoia, thinking people were after him.” He lived by himself for about a year after his diagnosis. From there he went to assisted living and is now in a home with around-the-clock care, and constant family visits.
Washington says, “One thing that’s made it really hard is when you see who that person used to be and what this horrible disease has reduced them to. I feel bad for him. It frustrates him and he says he ‘doesn’t know what’s happening to me.’ He’s the proudest man I’ve ever known.”
She cautions people who approach someone that they know has Alzheimer’s. “Don’t say ‘Do you remember me?’ You are frustrating them. Make it easier. Tell them who you are.” She says the association is a good resource for learning how to communicate in situations like this. “They’ve already got it down.”
Alzheimer’s is the most expensive disease in America with costs set to skyrocket in the years ahead according to the association, which reports the growing Alzheimer’s crisis is helping bankrupt America. In 2014 the total cost of Alzheimer’s will be $214 billion, including $150 billion to Medicare and Medicaid. Only 0.25 percent of this total has been committed to Alzheimer’s research, the only path to reducing cost.
By the Monday after the race, Rogers confirmed that more than $900,000 of the million-dollar goal had been met. She adds that the “National Institute of Health research investments in other conditions including cancer, HIV/AIDS and Cardiovascular disease are paying off. This proven funding approach should be applied to Alzheimer’s.”
Through its statewide network of offices, the association offers education, counseling, support groups and a 24-hour Helpline (1-800-272-3900) at no cost to families. They also offer care consultation, action plans and information and referral to programs like short-term respite care. In addition, contributions help fund advancements in research to prevent, treat and eventually conquer this disease. For more information about the Alzheimer’s Association, contact www.alz.org/co.
10 Warning signs of Alzheimer’s disease
1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality