http://www.alzheimers-illinois.org/enewsletter/march2013/young_onset.asp
Pati Hoffman always loved working.
She never viewed her position in marketing for a major food corporation as a grind. It was a delight designing menus and planning big food shows, the vivacious 59-year-old said.
But two and a half years ago, the Carol Stream resident found she was having difficulty keeping track of her day-to-day responsibilities. She was misplacing documents, printing the same materials repeatedly – something was wrong.
Pati Hoffman always loved working.
She never viewed her position in marketing for a major food corporation as a grind. It was a delight designing menus and planning big food shows, the vivacious 59-year-old said.
But two and a half years ago, the Carol Stream resident found she was having difficulty keeping track of her day-to-day responsibilities. She was misplacing documents, printing the same materials repeatedly – something was wrong.
“Normally I could have all the vendors, brokers, products, and I knew them like that,” said Hoffman with a snap of her fingers.
A concerned co-worker approached Hoffman, asking if she was okay. “I just thought I was stressed because they’d taken the marketing department from three people to one, and that was me,” she said. “It isn’t histrionics to say it was one of the most degrading, humiliating and sad six months of my life.”
Everything came to a head on an evening Hoffman found herself in the office preparing for an event the next day. Colleagues called an ambulance after she said she couldn’t remember where she was or the date.
Facing uncertainty
A diagnosis of young-onset Alzheimer’s disease followed, though it would take more than a few different doctors’ visits before Hoffman went to the Northwestern Alzheimer’s Disease Center on the advice of her primary care physician.
Learning she had the disease at 56 was hard enough, but coupled with the uncertainty she felt for her future made the situation all the more difficult. Hoffman didn’t return to work after the diagnosis.
Many with Alzheimer’s face anxiety about how the disease will affect their lifestyle. Another major issue is stigma — defined as an attribute, behavior or reputation that is socially discrediting in a particular way. Seventy-five percent of people with dementia and 64 percent of caregivers believe there are negative associations for those with dementia in their countries, according to survey fielded by Alzheimer’s Disease International and published in the “World Alzheimer Report 2012: Overcoming the Stigma of Dementia.”
“Speaking out about a diagnosis of Alzheimer’s disease or other cognitive impairment is a very personal decision – not everyone wants to do this, for various reasons. But when we think about who has the greatest impact on decreasing or even eliminating the stigma that surrounds this disease, it is the person who is living with the diagnosis,” said Jessica Kirby, former Director of Family and Support Services with the Alzheimer’s Association, Greater Illinois Chapter. “That’s not to say that others don’t have the ability to chip away at stigma and to increase awareness. But who has the greatest impact? It is the person who is living with the diagnosis and their family. They will be able to stop people in their tracks, to give them pause, to begin to reconsider their perception of what it means to have Alzheimer’s.”
Overcoming hardships
For her part, Hoffman is speaking about her diagnosis, her challenges with memory loss, and in doing so, advocating on her own behalf as well as for others affected by Alzheimer’s. She recently spoke about her personal experiences with the disease in front of crowds at the Chicago and Naperville Walks to End Alzheimer’s and is a member of the Greater Illinois Chapter’s Early Stage Advisory Committee.
“We come up with ideas, ways to raise money and talk about building support groups and connections for people with Alzheimer’s,” said Hoffman of the group comprised of people with the disease as well as those who have connection to the Alzheimer’s community through their work in healthcare and financial planning among other related fields.
Hoffman is an outspoken champion of the cause with a solid support system in her family. But bringing awareness to Alzheimer’s does not always require a platform and an audience.
“Speaking out about this disease is not just to large groups; it can also happen in smaller, more informal settings – at dinner with family and friends, with colleagues, while golfing or at church or during a community event,” Kirby said. “Combating stigma can be extremely empowering for the person who is diagnosed, providing an opportunity to fight this disease.”
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http://www.alzheimers-illinois.org/enewsletter/march2013/young_onset.asp
http://www.optimumseniorcare.com/services/alzheimerscare.php