It has become strikingly apparent that women are at the epicenter of the nation’s most expensive disease.
According to the 2014 Alzheimer’s Disease Facts and Figures report, issued in March by the national Alzheimer’s Association, a woman’s estimated lifetime risk of developing the disease at age 65 is 1 in 6 compared to nearly 1 in 11 for a man.
The report, an annual compilation of national and state information, found that among those Americans over 65 with Alzheimer’s, two-thirds are women and women constitute 60-70 percent of caregivers. Women in their 60s are about twice as likely to develop Alzheimer’s disease over the rest of their lives as they are breast cancer.
“There are more than 5 million Americans living with Alzheimer’s disease, including 230,000 here in Ohio,” says Carrie Mueller, director of development and communications for the Miami Valley chapter of the Alzheimer’s Association. “There are 30,000 people in the Miami Valley area living with Alzheimer’s and almost two-thirds of those are estimated to be women.”
Mueller said there are 591,000 Alzheimer’s caregivers in Ohio providing 674,000 hours of unpaid care valued at $369 million.
“Well-deserved investments in breast cancer and other leading causes of death such as heart disease, stroke and HIV/AIDS have resulted in substantial decreases in death,” said Angela Geiger, Chief Strategy Officer of the Alzheimer’s Association in Chicago. “Comparable investments are now needed to realize the same success with Alzheimer’s in preventing and treating the disease.”
No one know exactly why women are at greater risk for the disease, although women tend to live longer than men and age is the greatest Alzheimer’s risk factor.
There is no way to stop, slow the progression or cure it. But, says Mueller, locally her organization works to help all those affected by Alzheimer’s to live the best life possible with information, education and support. Realizing the impact Alzheimer’s has on women, the Alzheimer’s Association is launching a national initiative highlighting the power of women in the fight against the disease.
Meet those impacted by Alzheimer’s
Susan Shearer is an attractive woman in her 70s, who smiles a lot and is happy to sing excerpts from beloved hymns such as “I Walked One Day Where Jesus Walked.”
“I’ve been in music since I was born,” says the Miami Twp. woman, the wife of a retired Presbyterian minister.
Sue is anxious to read aloud the list of activities she’s recently been enjoying. She has jotted them down on a note pad.
“I work puzzles, I listen to music, I join in group activities and sing-alongs,” she recites. “And I do art activities and games.”
Five minutes later, she offers to read her list again. She reads it again, and again.
“One of the tools we use is list-making because it allows people to remember what they want to say,” Mueller explains. “Sue read her list four times without realizing she had already read it. It’s those subtle clues that you see when you start to spend more time with someone.”
The Schears are among those participating in a pilot project known as the Memory Resource Center.
“The MRC provides a program for the person living with dementia and the caregiver to interact together in a community-based program,” explains Katie Luce, director of the program.
The innovative project — the only one of its kind in the region — is open two half-days a week and is housed on the St. Leonard campus in Centerville. It serves approximately 35 people each week with activities ranging from art and music to inter-generational activities and volunteer projects done on site.
Bob Shearer says he and his wife moved to Dayton from Stubenville to be closer to family and to participate in the Memory Resource Center.
“This is unusual,” he says of the MRC gatherings. “Not every place is so supportive and we find the activities and resources very helpful. And while Sue may not remember the activities, they are quite helpful while they are being experienced.”
Women as caregivers
Adding to women’s Alzheimer’s burden, there are 2.5 times more women than men providing intensive “on-duty” 24-hour care for someone living with the disease.
Jenni Pfahl of Englewood can speak to the strain of caring for someone with Alzheimer’s. In addition to working full-time at Childern’s Hospital as a cardiac sonographer, she is primarily responsible for her husband’s care.
“If it wasn’t for family and friends, I don’t know how I could do this either financially or emotionally,” says Pfahl, whose husband, Bob, was only 49 years old when his colleagues at work called to say the computer analyst and IT director was ‘acting funny’ and couldn’t remember anything.”
In 2011, Bob was diagnosed with dementia. Three years later, Pfahl says it’s tough trying to lead a normal life. The couple have three children, including a son who is still living at home. Pfahl says it’s hard on the kids — and on her.
“I have to make sure someone is here to care for him,” she says, adding that professional agencies charge fees that are prohibitive for her. “He knows the past and he knows us but he doesn’t know what we did yesterday and I have to remind him to take a shower.”
Pfahl says after giving her husband breakfast in the morning, he may say he’s hungry and ask her to make breakfast.
When possible, Pfahl attends a monthly Alzheimer’s support group and finds it helpful.
“I love my friends but they don’t understand,” she says. “The people in my support group know what I’m going through.”
Lorna Dawes of Washington Twp. says at this relatively new stage of her journey as a caregiver for her husband, she finds the challenges to be the greatest she has ever experienced. She, too, has found the Memory Resource Center to be a place where those challenges are addressed from an informed, compassionate, professional perspective.
“The staff and volunteers respect the dignity of the client and genuinely understand and care about the emotional, physical and intellectual wasteland in which many caregivers dwell,” she says.
She says MRC activities vary on any given day, and the caregiver may choose to participate with the larger group or spend quiet time alone in one of the rooms set aside for that purpose.
“On many days,” says Mrs. Dawes, “that is exactly what I need, in order to retain my own, personal balance.”
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