Alzheimer’s already affects some 65,000 patients and 234,000 caregivers in Colorado, with the numbers rising sharply.
By Shannon Burgert
Baby boomers are starting to become seniors, and thanks to modern medicine, people are living longer. But with increasing age comes an increased risk for Alzheimer’s, a disease which the medical field has yet to successfully tackle.
Currently, Alzheimer’s is the sixth-leading cause of death in the United States. Its prevalence rises from 17 percent in 65-year-olds to 50 percent in 85-year-olds, but the disease is not a natural part of aging. Younger, or early-onset, Alzheimer’s can emerge in people even in their 30s.
[quote]If we don’t solve the problem medically, we’re all going to go broke, both emotionally and financially.”
—Dr. Huntington Potter, University of Colorado School of Medicine[/quote]
In Alzheimer’s, certain proteins build up in the brain, making it hard for brain cells to communicate with one another. The hippocampus, the brain’s center for learning and memory, is often the first affected, but as the disease progresses people often cannot perform even basic care for themselves. People with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but changes in the brain can occur as early as 20 years before signs appear.
While the world narrows for a person who has the disease, the time and money required to support that person escalate. In 2014, Alzheimer’s caregivers numbered 234,000 in Colorado, and the value of unpaid care alone exceeded $3.2 billion.
Many people with Alzheimer’s cannot afford to live in a private facility, and there is limited choice in homes that accept state aid. In Boulder County the median monthly price of assisted living is $4,400, according to Genworth Financial Inc.’s 2015 Cost of Care survey; costs can easily double for special memory-care units.
“It’s sad to see that happen to people at the end of their lives,” says Amelia Schafer of the Alzheimer’s Association, Colorado Chapter. “They’ve worked so hard, and then in a year’s time they go through their savings. Then all of a sudden it’s not a question of ‘What’s the best fit for me?’ It’s ‘Who will take me?’”
“If we don’t solve the problem medically we’re all going to go broke, both emotionally and financially,” says Huntington Potter, Ph.D., professor and vice chair of the Department of Neurology and director of Alzheimer’s disease research at the University of Colorado School of Medicine. The Alzheimer’s Association estimates that the disease will cost Medicaid and Medicare alone a trillion dollars a year by 2050. Potter notes that while Alzheimer’s disease is the most expensive disorder, it is also among the most underfunded.
Supporting Boulder’s Silver Tsunami
By 2025, the number of people in Colorado alone who have Alzheimer’s disease is projected to increase from 65,000 to 92,000, and Boulder County is aging faster than the rest of the state. By 2030, the 60-plus population is projected to reach 26.7 percent of the county’s total population—almost triple what it was in 2000.
In essence, Boulder is a retirement mecca. Not only is the county both physically and culturally active, but it also takes the attitude that seniors are a valuable community resource as volunteers, mentors and board members.
Boulder County also leads the way in how to look at aging differently, Schafer says. “Aging Services works with people on how they want to age,” and the county offers unprecedented services for seniors, such as the Long-Term Care Ombudsman Program and Project Visibility, which supports lesbian, gay, bisexual and transgender elders. Schafer says that while no community is adequately equipped with resources, from medical care to transportation, Boulder is more prepared than most to support its seniors.
Local agencies such as the Area Agency on Aging and the sheriff’s office are partnering with the Alzheimer’s Association to make the area more “dementia capable.” Training for law enforcement and first responders, for instance, includes specific search and communication techniques. “It helps them understand how people with Alzheimer’s and dementia view the world,” says Schafer. The association also partners with the Boulder Museum of Contemporary Art and runs a music program for people with early-stage Alzheimer’s to help them stay engaged in the community.
The Medical Front
We can’t yet prevent or reverse Alzheimer’s, but Potter is confident that we’re on the way. “It’s very disappointing that it’s taken so long, because we know so much about its pathogenic pathway,” he says. Alzheimer’s has been reversed in animal studies, but so far that success hasn’t transferred to humans.
Current research includes a look at caffeine as possibly fending off the disease, as well as an examination of people who suffer from rheumatoid arthritis, who generally don’t show signs of dementia.
Another line of study focuses on Down syndrome, says Potter, who also serves as director of the Alzheimer’s Linda Crnic Institute for Down Syndrome. Because of their chromosomal makeup, all people with Down syndrome show Alzheimer’s pathology in the brain by their 30s or 40s. But even though their brains may be riddled with the signature pathology—deposits of protein fragments called amyloids, and the development of twisted fibers in brain cells, called tangles—30 to 40 percent don’t yet have dementia. “We don’t yet know why people with amyloid deposits and tangles can sometimes appear to be protected from the cognitive effects,” Potter says.
What We Can Do
While prevention and reversal are in the hands of researchers, there’s still a lot for the rest of us to do. Potter says there is evidence that the onset of Alzheimer’s can be delayed through physical, social and mental activity, with physical exercise showing the clearest benefit. Current advice, he says, is “what’s good for the heart is good for the brain.”
Depression is considered a risk factor for Alzheimer’s, and it also depresses brain function in the hippocampus. In some cases, treatment of depression can reduce symptoms of dementia. Which condition is causal is unclear; regardless, says Potter, “It’s important to get treated for depression. It benefits you no matter what.”
Only 45 percent of Alzheimer’s patients or their caregivers are informed of their diagnosis, and yet early and correct diagnosis of Alzheimer’s is important. The Alzheimer’s Association website (www.alz.org/co) lists 10 warning signs and helpfully distinguishes them from normal aging. Early detection will become more crucial as drugs become more effective, but current treatment can slow decline for up to a year in some patients. Early detection also affords more opportunity to participate in clinical studies.
Diagnosis is also important because there are other types of dementia, such as vascular dementia, that are more treatable, and there are other treatable conditions, such as vitamin deficiencies, drug interactions and thyroid problems, that can cause signs of dementia.
Early detection gives patients and caregivers more time to plan. Megan Carnarius, executive director of Louisville’s Balfour Cherrywood Village memory-care facility, says that as a society we’re starting to do a better job of keeping Alzheimer’s out in the open. “People are more open about ‘This is a difficult topic, so how do we want to talk about it?’” she says, adding, “People with Alzheimer’s are incredibly brave.”
After learning of a diagnosis of any form of dementia, Schafer recommends calling the Alzheimer’s Association’s free 24/7 helpline (1-800-272-3900). The association provides resources, workshops and support, including help preparing for what’s ahead.
If you’re healthy but want to cover your bases for the future, Carnarius suggests considering long-term care insurance. “If you’re 55 to 65 and in a position to consider it, long-term care premiums are really reasonable.”
Potter’s advice: Be physically, socially and mentally active. But also, he adds, “be politically active. Talk to your legislators. Increasing research funds is probably the best solution. We’re all at risk, and therefore we all have a stake in solving this problem. And it can be solved.”
Shannon Burgert, Ph.D., teaches fifth grade at Fireside Elementary School in Louisville. An Ironman athlete, she writes often for Boulder Magazine about health and science.
This second-annual national event is scheduled for the summer solstice as a reminder that for Alzheimer’s patients and those who care for them, every day can feel like the longest day of the year. Participating groups pick what they want to do, like hike, bake, climb a mountain or play bridge. Register at www.alz.org.
Inaugural Boulder Walk to End Alzheimer’s, Aug. 1
Last year’s Denver walk raised more than $1 million. Boulder’s first walk starts on the CU campus at 9 a.m., with registration at 7 a.m. Go to www.alz.org/co and click on “Walk to End Alzheimer’s” near the top.
Here’s a small selection of movies that promote understanding of what life is like for patients, families and caregivers living with dementia.
Alive Inside (documentary, 2014) shows dementia sufferers’ astonishing responses to music.
Still Alice (feature, 2014), with an Oscar-winning performance by Julianne Moore as a brilliant linguistics professor who starts showing signs of dementia in her 50s.
I’ll Be Me (documentary, 2014) tells the story of singer Glen Campbell’s farewell concert tour after the “Rhinestone Cowboy” star was diagnosed with Alzheimer’s disease.
The Genius of Marian (documentary, 2013) is about a daughter’s efforts to preserve her artist mother’s memories before Alzheimer’s wipes them out—only to find that she herself has the disease.
Still Mine (feature, 2012) stars James Cromwell and Genevieve Bujold as a Canadian couple dealing in their own way with the wife’s dementia.
Away from Her (feature, 2006) follows a Canadian couple (played by Julie Christie and Gordon Pinsent) pulled apart by the wife’s decision to move to a nursing home for her dementia, and her subsequent attachment to a man she meets there.