The Alzheimer’s Association says in the United States, right now, there are about 5.4 million people who have Alzheimer’s disease.
For a long time, researchers have believed that the only way to find out if a person truly has Alzheimer’s is to do an autopsy on them, said Joel Kroft, the executive director of memory support services at Country Meadows Retirement Communities. John Bowen, the director of social services at Bethany Village in Lower Allen Township, said to be 100 percent sure, that is still the only method of confirming the diagnosis. However, Kroft said recently there has been a breakthrough in diagnostic testing for the disease.
“(Doctors) are able to more accurately diagnose Alzheimer’s disease,” Kroft said. “The University of Pittsburgh and the University of Pennsylvania are two of the country’s 26 Alzheimer’s disease research centers, and Pittsburgh has been a particularly active place. And recently there’s something they’ve created called the Pittsburgh compound, which is a dye on a brain scan, essentially, that allows scientists and doctors to see ... the plaque that is the hallmark of Alzheimer’s disease. And so that’s really helped with diagnostic testing a lot.”
Since scientists have started using Pittsburgh compound B, they have been more confident in diagnosing Alzheimer’s, Kroft said. He said while the common thought was that the disease couldn’t be diagnosed without an autopsy, the research has helped change that.
While treatment options are limited, there are a handful of medications that people can take to slow progression of the disease. However, Kroft said for many people, the medications are not worthwhile.
“There’s not very many medications,” he said. “They’re not designed to treat the disease, because we don’t really understand the underlying structure of Alzheimer’s disease. They are designed to slow the clinical progression, and what that means is (they) help people stay independent a little longer, to slow memory loss and confusion down. They’re not terribly effective.”
Kroft said research shows that, at most, half of the people who take the medications may see slight improvements for about six months. The medications also come with a lot of side effects and are expensive, he said. So Kroft said it’s difficult to treat Alzheimer’s without knowing more about it, and the research just isn’t there yet.
Some researchers are calling Alzheimer’s disease Type 3 diabetes, because of the amount of insulin in the brain when they look at it, Kroft said. He also said there is a lot of frustration in Alzheimer’s research because of the difficulty in finding treatments.
Caring for family members
Kroft said the disease is a long process, lasting an average of eight to 10 years, but it can go on for as long as 20 years. With the possible length of Alzheimer’s being so varied, there are a many stages in which people can go through, so there is a need for more options in care, Kroft said.
“People should really work with their doctors to find out where their loved one is in the disease process and what kind of care they may need,” he said. “In the beginning stages, people might be safe and content at home with a caregiver.”
Kroft said the next stage may lead the person to needing some in-home care, and there are organizations that will send someone to cook, run errands and make sure that person is safe and taking all of their medication on time and correctly. As the disease progresses, since there aren’t any treatments right now, people will likely need to have more care and be looked after most times during the day, Kroft said.
“There’s lots of reasons why being home can be really unsafe for a (person with dementia),” he said. “There are adult day care programs, there are senior centers that specialize in people with dementia, and they also provide for another way for people to get out of the house and socialize and be safe while their caregiver is at work.”
When being home permanently is no longer an option, there are personal care facilities that have locked compounds, so wandering isn’t as big of an issue, Kroft said. There are lists of those places for people to look through on the Alzheimer’s Association website at www.alz.org. Facilities, such as Country Meadows Retirement Communities, offer specialized care for those with the disease, with people who are trained to work with the patients in a compassionate way, Kroft said.
“We use a philosophy called the validation method,” he said. “It’s really a way to talk and interact with somebody using non-judgment, using trust, using empathy.”
Using the validation method, Kroft said if a resident comes up and says they have to go because they need to drop off their kids at school and then go to work, they won’t tell that person they are wrong. Instead of redirecting the person, they will talk to the patient about how important their job was, or how good of a parent they were. Kroft said it’s important to be patient and compassionate because the person deserves to be treated that way.
“We, as a society, we have to change our views of how we view aging and old people,” Kroft said. “But also, how we view people with dementia — we have to take away that stigma. ... They’re still human beings that are totally worth our respect and dignity. ... I think that society really needs to come together to take care of these people. Unless we find a cure, we’re really looking at this giant baby boomer population that is coming down the road at us. Some of the numbers suggest that by 2050 there could be 15 million Americans with Alzheimer’s disease.”
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