Doug Kapustin, for USA TODAY
Carol and Bob Blackwell take a daily walk near their suburban Virginia home.
Bob Blackwell was 64, recently retired from the CIA as an analyst on the former Soviet Union and Europe and still functioning normally. "He was brilliant then."
That was five years ago.
"Here we are, and there's no cure and no promise of a cure," Carol says, sitting in her family room, eyes wet with tears.
She is Bob's primary caregiver, and the last couple of months have been "tough," she says. There are days when Bob doesn't know she's his wife. "I've been through a lot of grieving," she says. "I know it's too late for a cure for Bob, the disease has moved into too many parts of his brain, but I'm praying for my children and grandchildren. We have to find a cure."
Growth of Alzheimer's
Projected number of people 65 and over in the U.S. with Alzheimer's disease* in millions.
* Does not include early onset
** Projected
* Does not include early onset
** Projected
Carol will be paying close attention to government meetings Tuesday and Wednesday in Washington where Health and Human Services officials are gathering with other medical experts to discuss the framework for the first national plan to fight the disease. The No. 1 goal stated in the early draft of the National Alzheimer's Project Act is to prevent and effectively treat Alzheimer's by 2025. Although the funding levels have not been determined, disease experts compare the multi-agency federal approach of NAPA to the wars on heart disease and cancer.
Alzheimer's, which is a form of dementia that causes progressive loss of intellectual and social skills, is the only disease among the top killers for which there is no prevention, cure or treatment that will slow its progression.
"I think the potential impact of this plan is huge," says Ron Petersen, chairman of the NAPA non-federal advisory council and director of the Mayo Clinic's Alzheimer's Disease Research Center. "Given the economic problems, it's a bit of a challenge, but this is our chance to make a bold statement."
President Obama signed NAPA into law last January. Experts have spent a year formulating the framework for the plan, and the final draft is due on the desk of HHS Secretary Kathleen Sebelius this month or early February. George Vradenburg, a member of the research committee with Petersen, says the early plan is good overall but needs to move faster: "It's the first time the government has talked about a time-based goal to stop Alzheimer's. I'm going to urge we accelerate the time. I'm committed to 2020."
The task before them is an urgent one. The disease runs in families — Bob Blackwell's grandmother died from it, and his mother has it — and affects more than 5 million people in the USA. About half the people 85 and older have the disease. The number of cases, including early-onset Alzheimer's like Bob Blackwell's, is likely to triple by 2050 as the Baby Boomers grow old, at which point annual costs are likely to soar to $1 trillion. The illness costs the Medicare and Medicaid programs $130 billion a year.
"My mother-in-law has been in a facility for 15 years," Carol Blackwell says. "In 2005, after her husband died … she'd used up all her money (for care), and Bob had to file for Medicaid for her. She's been living at the government's expense since then. We have to prevent those costs down the road."
Carol and Bob Blackwell have marched on Capitol Hill with members of the Alzheimer's Association to push for more research dollars, funding that falls behind many other diseases. In a survey last year by the Harvard School of Public Health, nearly 70% of respondents said the government should increase spending for Alzheimer's research.
Changing perceptions
Harry Johns, president of the Alzheimer's Association, says the research amount needs to grow to at least $2 billion. He was in charge of strategic initiatives for the American Cancer Society before taking this post.
"People have different opinions about the success of the war on cancer," Johns says, "but people are living longer (with cancer) and have hope. There is better diagnosis and drugs for some cancers. NAPA has the potential to also change the course of a disease."
He aims to eliminate the stigma. "Back in the 1960s, people didn't talk about it," he says. "They were ashamed of it and wanted to hide it. We need to change that public discussion."
He is hopeful that new, high-profile faces of Alzheimer's will help bring that about and put the national spotlight on the disease as Betty Ford did for breast cancer. Both Tennessee women's basketball coach Pat Summitt and singer Glen Campbellannounced last year they have Alzheimer's and are continuing to work for as long as possible.
"No (celebrity) has gone public with Alzheimer's since Ronald Reagan, and when he announced it, we didn't see much of him anymore," Johns says. "Pat and Glen going public have been watershed moments for the cause."
Finding a drug that would slow the progress of Alzheimer's for just five years would greatly reduce government costs and the toll on families, Johns says: "There really isn't another disease that has this kind of impact. It is disproportionately under-invested."
Where the money will come from is the key question. The National Institutes of Healthoversees the bulk of the groundbreaking research against diseases. Francis Collins, director of the NIH, told USA TODAY in July that the agency's budget was cut $321 million in the fiscal year, the second time in 40 years the NIH has had a budget that was less than the preceding year.
The government spent about $500 million in 2011 on research for Alzheimer's and related dementias. By comparison, approximately $521 million was spent on complementary and alternative medicine and $823 million on obesity. Cancer drew a $6 billion check in 2011 for starters, with additional funding allocated for breast, brain and lung cancers.
"We're still in the process of getting feedback and making recommendations about funding levels," Petersen says. "But the plan will have to be in tune with the fiscal realities everyone is facing right now."
Petersen expects HHS to finalize the plan for NAPA by late April in time for a research summit in May at the National Institute on Aging.
Encouraging progress
Petersen is encouraged by progress in the past five years. Researchers identified genes associated with the disease and have a clearer idea of when the disease begins — often as early as 10 or 15 years before symptoms appear — and what causes it. They have discovered some of the disease's biomarkers in a variety of tests, potentially making diagnosis possible years before the disease causes damage. Before, the only way to identify Alzheimer's was through an autopsy of the brain.
Researchers suspect that plaques and tangles growing in the brain are destroying nerve cells and pathways in some forms of the disease. Researchers hope ultimately to treat the disease by targeting risk factors, such as the plaques, with drugs. Petersen compares the process to preventing or slowing heart disease.
"By knowing the risk factors for heart disease, doctors can treat those risk factors and prevent the heart attack," he says. The aim is to identify drugs to treat the risk factors for Alzheimer's in the same way statins lower bad cholesterol levels, one of the primary risk factors for heart disease.
The drugs for Alzheimer's only treat the symptoms. Once symptoms appear, it is too late to stop the disease from progressing and killing more brain cells.
Bob Blackwell takes Aricept and Namenda, drugs approved by the Food and Drug Administration to treat two different brain-messaging symptoms at different stages of the disease. Their effect is usually modest.
"They helped enormously, especially in the beginning," Carol says. "It was like getting Bob back for a year."
She hoped the fact that Bob was in good physical health would help. Both she and Bob are slim and fit. "We've done everything right," she says. "We've eaten right, exercised, done all the things they recommend to ward off disease. But it doesn't work (against Alzheimer's). I've seen this disease take down the best and brightest."
A growing list of 'lasts'
She takes Bob to adult day care two days a week, where he does activities with other Alzheimer's patients.
"He didn't like it at first," she says, but she had no other option. She works part-time and could not leave him alone at home. "I tried that once, and he called my daughter and daughter-in-law, and he said he'd been abandoned."
Bob has always been a photography buff, but his illness makes it difficult for him to remember the settings on the camera. He has boxes full of images from trips to St. Petersburg, Russia, and to a family cottage in Michigan.
"The neurologist told me we couldn't travel anymore because of how his disease has progressed," Carol says. "It's too confusing for him."
In a blog she keeps for USA TODAY, she has been writing about "the season of lasts" — listing things Bob has done for the last time. He has been a lifelong fan of University of Georgia football, for instance, but following the games last fall was too challenging. Exhibiting his photos in shows also is too taxing.
The past couple of weeks, Bob has been getting up around 5:30 a.m. and wandering around the house.
"He was fully dressed the first time, and I'm surprised I didn't hear him," Carol says. "He doesn't try to go outside because he likes to be in the house and hates the cold, but I'm going to have to take precautions and turn on the house alarm."
She says Bob is frustrated, sometimes asking her why he can't get a job.
She shows a visitor photos on the family room wall of a trip Bob took on Air Force II with then-Vice President George H.W. Bush to the former Soviet Union. Bob smiles, raises a finger and points at himself in the photo sitting across from Bush.
He does not remember the vice president's name.
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