Tom Smart, Deseret News
COTTONWOOD HEIGHTS — A mother and daughter sit on the couch, flipping through a photo album.
"Who is that?" Allison McDaniel asks.
"I don't know," Diane Hinckley responds blankly.
The questions continue. The mother can't name many of the faces, but she attempts some.
"That's actually you," McDaniel, 44, tells her 66-year-old mother. "Yes, you're my mom."
Hinckley was diagnosed with Alzheimer's disease in January 2010 and is now in stage 6. She lives with McDaniel, who said her mother's mental capabilities are gone, but physically she's fairly healthy.
A report released Wednesday by the Alzheimer's Association shows women are on the front lines, battling Alzheimer's disease in great numbers and also bearing the heaviest burden of care in families.
One in six women has an estimated lifetime risk of developing the disease. For men, the risk is one in 11. At age 60, women are about twice as likely to develop Alzheimer's disease over the rest of their lives as they are breast cancer.
The report also shows that there are 2.5 times as many women providing 24-hour care for someone with Alzheimer's disease than men.
"My mother is a beautiful, talented, intelligent woman, and this darkened her world," McDaniel said. "It's so hard to see (Alzheimer's) darkening the light that women bring and that, to me, is crushing."
Women at the center
Melissa Lee, spokeswoman for the Utah chapter of the Alzheimer's Association, said women make up the epicenter of the disease.
"We need to be more aware of how this affects women," she said. "We need to bring this awareness to women in Utah so we can all work together and try to overcome this."
McDonald said it is ironic the disease and women are so entwined.
"Women are the most beautiful things in the world," McDaniel said. "We're known for making the world a more beautiful place, and how ironic this condition is seen as so unattractive, so dark."
The report projects that in Utah in 2014 there will be 28,000 people age 65 or older with Alzheimer's disease. That number is estimated to increase to 42,000 in 2015.
There are about 5 million Americans living with the disease, with dementia also claiming victims.
Harold Hinckley, Diane's husband, said he is grateful to have the help of their six children in caring for his wife.
"It's exhausting emotionally," he said.
Between changing her clothes, fixing her hair the way she likes, cooking meals and taking care of all the paperwork — caring for Diane Hinckley is physically very taxing.
"When she was in her prime, she could crochet, do calligraphy, do anything handiwork you can imagine," Harold Hinckley said. "Now she can hardly hold a spoon."
McDaniel said being a caregiver for her mother is unsettling. It doesn't feel right. It doesn't feel respectful.
"She was my lioness protector. I don't get that blessing anymore," she said. "I don't have anyone that looks out for me anymore, and, even then, I have to look out for her as well."
Of caregivers who feel isolated, the report states that women are 17 percent more likely to link isolation with feeling depressed, compared to only 2 percent of men.
According to the report, there are 140,000 Alzheimer's caregivers in Utah who give 159,000 hours of unpaid care valued at more than $1.9 billion.
McDaniel will take a new job with the Utah chapter of the Alzheimer's Association at the end of the month. She said she has properly grieved the mental death of her mother; now she wants to do something proactive.
Until then, she will continue to chat with her mother during the day, let her play with their cat Jake, take her for walks, and listen to Diane Hinckley talk to her reflection in the mirror like a long-lost friend.
"They're just giggling and carrying on a conversation," McDaniel said. "So you just giggle with her and enjoy the experience with her."
Harold Hinckley said the diagnosis has been hard on their family. His plans changed dramatically; serving an LDS mission with his wife and traveling were no longer options.
Instead the family is learning how to cope and get through the emotional and physical challenges that he said you can't really prepare for.
McDaniel treasures that photo album. She wishes she had documented her mother's life before she couldn't remember it.
"Everyone needs to be careful and make the most of what time you have, and then prepare for it in case you don't," she said.
Lee and McDaniel hope to see more financial and political backing to find a cure or treatment for Alzheimer's and dementia.
Lee said if Alzheimer's disease was eliminated tomorrow, half a million lives would be saved each year.
"It just continues to put out a lot of beautiful light," McDaniel said.
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