Anyone who wants to learn more about Alzheimer’s disease, research or caregiver resources is invited to the Alzheimer’s Foundation of America’s free Alzheimer’s & Caregiving Educational Conference, set for 10 a.m. to 1 p.m. May 14 at the Palmer House Hilton, 17 E. Monroe St. in Chicago.
Charles Fuschillo Jr., president and CEO of the foundation, said he started the initiative eight years ago.
“he whole idea was to provide empowerment and better education about Alzheimer’s disease and the services we offer at AFA and local communities,” he said. He added that
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The foundation was founded by Bert Brodsky, still an active chairman of the board, who “struggled finding services in the ‘80s” when he was caring for his mother for more than a decade.
“The mission statement is based on his experience to provide support services, education and families affected by Alzheimer’s. We also fund research for new therapies and a cure,” Fuschillo said.
The foundation covers the entire country on a five-year cycle of monthly conferences. Thus far this year, about 800 people combined showed up to conferences in New Mexico and Mississippi.
One popular offering is a free memory screening. “We like to call it a ‘checkup from the neck up.’ It’s something we educate primary care physicians constantly to provide this for the annual screening,” he said. “We offer this at every conference. Generally every appointment is booked. It takes 10 to 15 minutes. We check your memory, language skills. If you score above the baseline, take it within a year. We also offer it online and virtually.”
Local panelists are chosen for each conference. The Chicago event includes Susan Frick, a social worker and education and recruitment coordinator for the Rush Alzheimer’s Disease Center in Chicago. Frick, who also is director of Without Warning, a support group for people and families who live with younger-onset Alzheimer’s, will talk about community-based resources, support groups and connecting with other families can help caregivers.
Emily Rogalski, the inaugural Rosalind Franklin Professor of Neurology at the University of Chicago and founding director of the Healthy Aging & Alzheimer’s Research Care Center, will discuss how the brain changes with Alzheimer’s disease and how identifying factors that contribute to strong brain health in people older than 80 who have the memory and cognitive abilities of people as young as their 50s and 60s might accelerate breakthroughs in treatments and healthy aging.
Luisa Echevarria and Perla Castro – two Chicago residents who cared for family members with Alzheimer’s disease – will share helpful, practical tips learned from their own caregiving experiences and discuss why it’s essential for caregivers to recharge and care for themselves.
“The goal is at the end of the conference, and I always hope we achieve this, is that people are better educated about Alzheimer’s disease, caregiving and the services that are available,” Fuschillo said.
Someone with a lot of experience caring for someone with Alzheimer’s disease is panelist Castro, interim executive director of the Latino Alzheimer’s Coalition for Advocacy, Research and Education, or LA CARE, an organization dedicated to advocacy, research and education of the disease. She cared for her mother, Lesbia Y Castro, who received an Alzheimer’s diagnosis in her early 50s.
“My mom lived with the disease for close to 20-plus years. We took care of her at home. My dad dedicated 20 years to her caregiving,” she said, adding that the stress of caregiving can be overwhelming.
“We stop taking care of ourselves,” Castro said. “I took my father more times to the ER than my mom” because of that. “It sounds cliche, but you need to put your mask on. In order to be able to provide care for a loved one, you need to be in a good place,” she added. “It’s not selfish to take care of ourselves. It’s love for the other person and self-love.”
She pointed out that Alzheimer’s is one of the only diseases without a cure that affects a huge number of people, including in this state. “In Illinois there are more than 251,000 diagnosed with Alzheimer’s, and the population is 12.7 million,” she said.
People of Latin descent are particularly at risk. “We are more than 1.5 times more likely than caucasians to be diagnosed with Alzheimer’s. It’s taboo still within the community. We don’t like to talk about it. Some people look down upon it,” Castro said. “I feel the commitment to talk about this because it caused so much damage to my family.”
She speculated that poor diet, lots of stress and not working out are among risk factors. “We need to work on fighting the stigma. There’s nothing to be embarrassed about. It’s a disease; we did nothing wrong.”
Another complicating factor is religion. “Church people start asking ‘Maybe you need to pray more. Maybe you need to talk to God and see why he is doing this,’” Castro said. “The community doesn’t understand the disease” – a sentiment even some of her own relatives share.
“There is not a lot of research targeted at Latinos. They don’t want to participate,” she said, something that LA CARE is working to change by advocating for more research and more participation by the Latino population.
Echevarria, a board member for the Alzheimer’s Foundation of America for more than 10 years, first experienced Alzheimer’s in her mid teens after moving to the United States from Cuba when she realized her grandmother, who lived with them, could no longer tell time. Echevarria helped care for the woman she called her “rock” during the Cuban Revolution.
The Chicago resident, former director of community empowerment for Univision Communications Inc. in Chicago, lived in La Grange before moving to the city. When her parents were preparing to retire and move to Miami to be closer to family, she noticed her mom having the same type of issues as her grandmother. A diagnosis of Alzheimer’s came not long afterward, and she lived for another 14 years or so, spending time at an adult day care and later at an assisted living facility.
She said caregiving, “like everything else in life, has to be culturally compatible.” At her mother’s facility, everyone spoke Spanish and a resident would play Spanish music on the piano. “It was so touching. Another thing I always say is when your loved one is diagnosed with Alzheimer’s, it doesn’t mean you won’t have beautiful moments or special connections. … Sometimes, when the brain isn’t working too well, the heart can speak.”
Gaining support from others who have the same experience is important, and Echevarria urged caregivers to gather information and resources that will allow them to help their loved one. “This conference is going to be a lot of caregivers. That’s always the case,” she said. “That for me is key… finding the resources, getting help, asking for help.”
Helping others is one reason she volunteers. “That’s why these conferences and being on a panel mean so much to me – I’ve seen when someone is thinking ‘This is what I’m going through,’” shared Echevarria, who joined the foundation when her mom was still alive. “Until there’s a cure, there’s care.”
The importance of knowing she’s not alone sustained her. “It really is therapy for me to go and talk to my Alzheimer’s Foundation colleagues who share the experiences,” she said. “Almost every single person who was working there has had a loved one with Alzheimer’s or is a caregiver themselves. … While we’re alive, there is always an opportunity to connect and have joy. It’s very hard.”
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To register for the conference, visit www.alzfdn.org/tour. Those who cannot participate or who have questions about Alzheimer’s disease can connect with licensed social workers seven days a week through the foundation’s national helpline by calling 866-232-8484, texting 646-586-5283 or web chatting at www.alzfdn.org. The web chat and text message features are available in more than 90 languages.
Melinda Moore is a freelance reporter for Pioneer Press.