September 21, 2012
Today is National Alzheimer’s Day. More than half of San Diego Homecare’s clients are afflicted with Alzheimer’s. San Diego Homecare is committed to assisting the senior community in San Diego that are challenged with this difficult disease. The elderly have so many challenges with the simple process of getting older, when complicated with Alzheimer’s or Parkinson’s disease the challenge can be overwhelming.
Following is an article in today’s San Diego Union, I thought it was an excellent article:
A few years ago, John Nelson started getting confused about how to turn off lights in the house. He forgot that peanut butter was kept in the refrigerator. He walked away from an overflowing sink.
Then he wandered away while he and his wife, Jean, were shopping and couldn’t find his way back to her. She called the police.
“In the beginning I thought, ‘he’s just getting old.’ But it was more than that,” Jean said. John Nelson, 80, was diagnosed with dementia that has continued to advance. The La Mesa couple have been married 55 years and some days now, he gets confused about Jean.
“He thinks I’m his sister,” she said.
The experience is achingly familiar for families with loved ones living with Alzheimer’s disease or related dementia. So activists honoring World Alzheimer’s Action Day on Friday hope to raise awareness that more research, services and education are needed for this fatal disease that promises to grow dramatically in coming decades.
“About 5.4 million Americans have Alzheimer’s and that number is expected to triple by 2050,” said Mary Ball, chief executive of the San Diego/Imperial chapter of the Alzheimer’s Association, which provides extensive information and assistance services.
“When you add in the caregivers and family members around the person with the disease, it’s a staggering number of people affected.”
While the number of people living with Alzheimer’s continues to grow, 2012 has been an eventful year for research and funding related to the disease. Still, no scientific breakthroughs have occurred.
“While at this stage we can’t stop the disease, we can affect how people live with it,” said Dr. John Daly, a professor of geriatric medicine at UC San Diego and medical director of the university’s Seniors Only Care, or SOCARE, outpatient geriatric clinic.
“We can provide care that offers individuals comfort and compassion, and emphasizes what they have rather than what they’ve lost.”
Daly also is a board member at Glenner Memory Care Centers, which provides dementia-specific day care programs for adults and support services for caregivers at three locations.
John and Jean Nelson know the Glenner center in Hillcrest well. John spends three days a week at the little sun-filled house on Fourth Avenue, where trained staff and volunteers offer exercise, music, pet therapy and other activities. Jean attends a weekly caregivers support group, where she knows others will understand why she no longer sleeps well at night and why she never, ever leaves John alone.
“We tell our stories. Sometimes we laugh, sometimes we cry. And there’s always new information there for us,” she said. “The Glenner center is wonderful because I get some ‘me’ time and John loves it. When I come to pick him up he always seems to be singing.”
On the funding side this year, the Obama administration in May unveiled an action plan tied to $156 million in new research and education spending: $50 million the National Institutes of Health added to its 2012 Alzheimer’s research; $80 million in the 2013 budget for new research; and $26 million for public education, caregiver support, and outreach to health providers to emphasize the need for cognitive testing for seniors.
The action plan was called for in the 2011 National Alzheimer’s Project Act that includes an aggressive timeline of preventing and effectively treating the disease by 2025.
As for research, developers of two potential new drugs announced this summer that clinical trials failed to slow cognitive decline in people with mild to moderate Alzheimer’s. While disappointing, some scientists say the data may point them in more promising directions.
No one is sure what starts the Alzheimer’s disease process, but damage to the brain begins 15 years before symptoms appear. Hallmarks of the disease are the buildup of protein fragments called beta-amyloid into hard plaques and the growth of tangles of tau protein, which lead to the nerve cell death and brain shrinkage.
The clinical trials involved the drugs solanezumab by Eli Lilly & Co. and bapineuzumab by Pfizer and Johnson & Johnson. Both drugs were designed to remove buildup of beta-amyloid.
The results suggest to researchers that they should identify people in the earliest stages of Alzheimer’s disease with less amyloid plaque buildup or tau tangles, and focus drug studies on them. In some cases, enrollees might be identified through a genetic mutation associated with about 5 percent of Alzheimer’s cases.
“People are now saying the reason these drugs failed is because we started giving them too late, after (brain) damage was already done. That’s certainly a possibility,” said Dr. Douglas Galasko, a professor of neurosciences at UC San Diego and director of UCSD’s Shiley-Marcos Alzheimer’s Disease Research Center.
“We have a lot of evidence that they have some impact on removal of amyloids or (stopping) buildup of amyloids. The question is, do they have enough impact.”
Researchers are now looking for reliable biomarkers that would serve as an early warning for Alzheimer’s, much the same as cholesterol is monitored for heart disease.
Scientists at UCSD and elsewhere are looking at amyloid and tau found in blood and spinal fluid as possible biomarkers, along with using MRIs and functional imaging of the brain.
“This would give us markers that would allow us to look at the effects of intervention as early as possible,” Galasko said.
At UC San Diego’s Memory Disorders Clinic, patients are assessed and may be enrolled in clinical trials that could lead to new treatments. Clinic director Dr. Michael Rafii also is associate medical director of the Alzheimer’s Disease Cooperative Study which is conducting several clinical trials on potential new therapies.
“As far as slowing down the progress of the disease, we don’t have that yet,” Rafii said. “That’s what all of these studies are aimed at. The goal is to find a drug that affects the underlying cause of the disease.”
Meanwhile, early diagnosis “makes a vital difference in quality of life,” Daly said.
Anyone with concerns about their memory or thinking clarity should get a medical work-up, he said, to first see if problems such as medication interactions or vitamin deficiencies could be at fault. If those are ruled out, specific cognitive tests and other diagnostics are done, since symptoms of dementia are subtle in the early stages.
The stakes are high, since declining decision-making skills can make people susceptible to financial scams, car accidents or dangers in the home. People may forget to take medications for other illnesses, worsening those conditions. Knowing what’s wrong is the first step in making life safer for someone with early dementia.
“A diagnosis of Alzheimer’s is devastating, but knowledge also is power,” Daly said. “When people get the diagnosis at an early stage it allows them to participate in planning for the rest of their lives.”
How do they want to live, who should make decisions for them, how aggressively do they want to be treated for other illnesses in the future. Those are all questions that can be addressed at an early stage, he said.
For Jean Nelson, her husband’s diagnosis allowed the family, including her adult sons, to talk about what they want for John.
“My sons know that eventually things are going to advance and he may need to go to a nursing home,” she said. “But we still go to the park and to museums. John enjoys it and I want to keep him home with me as long as possible. He is very dear to me.”
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