WHOA, WB was tested for the APOE gene. Now I learn there are three more genetic markers that can guarantee family members who inherit it, will get Alzheimer's. Shocking...
RESTON, Va. — Bob Blackwell smiles tenderly down at his mom, leans forward, and touches his forehead to hers. He tells her how nice she looks and how happy he is to see her today.
Perched in her wheelchair, she gazes at him, making barely audible chirping sounds. Her lips seem to form a smile.
Carolyn Blackwell, 97, has lived in her same tidy, unadorned little room at a nursing home here for seven years of her past 21 with Alzheimer's disease, a brain-wasting condition that slowly robs people of memory, and later, of the ability to speak, eat, and eventually even breathe.
For all of those years, Bob and his wife, Carol, have visited her several times each week to feed her and make sure she's getting good care. But there's no quality of life to speak of, Carol says. "She can't walk, she can't talk. She doesn't do any other activities other than sleep and eat. She's in the late stages of it, so there's really nothing left to do but die."
What makes the visit achingly bittersweet is that Carolyn is not the only one with an incurable form of dementia.
Bob, a retired CIA executive, was diagnosed almost five years ago, at age 64, with younger onset Alzheimer's, and there's an unspoken sense that he's not just looking at his mother, but at his future.
For the average person, the risk of Alzheimer's is one in 10, and the biggest factor is age, says Gary Kennedy, director of the division of Geriatric Psychiatry at Montefiore Medical Center in The Bronx, New York
The risk is about 2% to 5% by age 65, and it doubles every five years after that. Having close family with the disease is a risk factor, too, says Scott Turner, director of the Memory Disorders Program at Georgetown University Medical Center in Washington.
"If one parent or sibling is affected, the risk doubles," he says. If two parents or siblings are affected, the risk is four to 10 times higher.
USA TODAY has followed Bob Blackwell's progress since 2008, and the Blackwells blog about living with Alzheimer's on USATODAY.com. In recent months, however, Carol has become the main contributor.
The typical Alzheimer's patient lives about four to eight years after diagnosis, and there is no treatment or cure, says Beth Kallmyer, senior director of Constituent Services for the Alzheimer's Association.
As experts from around the world gather this weekend in Paris to present research at the Alzheimer's Association's International Conference on Alzheimer's Disease, the Blackwells and other families will follow the news.
Carol Blackwell says she used to hope for a cure for Bob, but she thinks further ahead now -- about her son, daughter and five grandchildren.
Alzheimer's can hit families hard, Kallmyer says. But in families such as the Blackwells', where more than one member has the disease, the impact is even more profound, affecting relationships and the health of the key caregiver and draining finances, she says.
But she says the more familiar a family is with dementia and its symptoms, the more likely the disease will be flagged earlier in other relatives. That means spouses, siblings and children will have more time to prepare financially and seek out support.
No magic equations
When Lee Sneller, 71, of Flower Mound, Texas, was diagnosed with Alzheimer's two years ago, it wasn't a surprise, but it developed sooner than they had expected, says Pat Sneller, his wife of 47 years.
"His mother had died at age 90 of Alzheimer's. His maternal grandmother had had it, too," says Pat, 66, whose father also had Alzheimer's.
Knowing the family history, they purchased long-term health insurance more than a decade ago. In 2009, they joined a clinical trial for healthy people with a family history of the illness. During an exam for the study, the doctor told them Lee already had Alzheimer's.
"When we got this diagnosis, we sat down and cried and cried and said, 'What are we going to do about this?'" says Lee, who is in the early stages and leads an active life. "Pat and I are positive thinkers, and we realized as we talked that we wanted to go forward and let people know so they'd understand if I didn't do things the way they should be done."
Kallmyer says a diagnosis is sometimes harder for those who already have witnessed the disease up close in another loved one.
"When you have someone who's seen it in a parent, and then their spouse is diagnosed, there's a big emotional adjustment. You have so much knowledge upfront. It can be really overwhelming," Kallmyer says.
Like the Blackwells, the Snellers worry about the legacy they've passed on to their three children and grandchildren.
But there are no magic equations that can tell the offspring of someone with Alzheimer's whether they will succumb to it, and at what age it will strike, says Elisabeth McCarty Wood, a genetic counselor at the University of Pennsylvania Center for Neurodegenerative Disease Research in Philadelphia.
"The biggest challenge I face when talking with families is that we're not at the point where we can give someone a number as to what their own personal risk is," she says.
McCarty Wood says genetic testing is definitive for only 2% to 3% of the Alzheimer's population. Early Alzheimer's is caused by a mutation in any of three genes: PSEN1, PSEN2 and an amyloid precursor protein gene called APP. If someone comes from a family known to have one of the genes, then they are eligible for testing; if they test positive, then they're going to get Alzheimer's, she says.
Another Alzheimer's gene, APOE, is a risk factor as well, but again, it doesn't guarantee someone will get Alzheimer's, Kennedy says.
"The majority of the population will never develop Alzheimer's, even if a parent has it," he says. But he says many families will have a member with the illness, which affects 5.4 million Americans, according to the Alzheimer's Association.
Turner says some studies -- most of them observational -- suggest a higher level of education, exercising and staying social may reduce the risk. A history of traumatic head injury, hypertension, diabetes, smoking, alcoholism, stroke and depression may be linked to a higher risk for dementia.
But Carol Blackwell says she believes there's still a lot to be untangled. "Bob did and does all the right things," she says of her husband, who had an advanced degree, was an avid reader, eats well and stays fit.
The next generation
Bob and Carol's daughter, Jennifer Blackwell, 39, a mother of three and an attorney from Ann Arbor, Mich., says she has seen a change in her dad since Christmas. Last weekend, she visited her parents at the family's vacation home in northern Michigan.
"I definitely noticed a lot of change, and that's been hard. We were still at a point six months ago when he asked me about my job. He could still remember the big cases I was working on. Now he's having trouble just finishing a conversation," she says.
Jennifer says she hasn't given a great deal of thought to her own future health, but questions hang out there in the ether.
"These past few years, I've wondered, 'What if that's me one day?'" she says. "But I'm so wrapped up with the changes Dad's going through and the impact it puts on my mom, I'm trying not to worry about what's next for my brother and me."
Lately, Jennifer, who lives nine hours from her parents' home in Great Falls, Va., has contemplated moving closer to them. "I think about it all the time -- moving back. They did a wonderful job raising me, and I want to be able to help them when they need it."
"I've been really impressed with the inner strength that you see in families. It's inspiring. And love. Simple love between family members to help each other cope," McCarty Wood says.
When you watch Bob Blackwell help tuck his mother into her patio chair at lunchtime, and patiently guide the straw in her iced tea glass to her lips, you see he wants to be there for his mom, too.
My name is Rhonda Brantley and my husband, Billy Ray Brantley, suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.
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