Susan Scanland, a physician’s assistant for more than 30 years who has specialized in the care of people living with Alzheimer’s and related dementias, shared her expertise with nearly 75 people at the Doubletree by Hilton at Eisenhower Airport in Wichita on Jan. 20.
“It takes on average, two and a half years to get a diagnosis of Alzheimer’s,” Scanland said. “And if the person or the family are in denial, it can take up to six year to get a diagnosis.”
Waiting can mean that drugs that can help preserve memory function are less effective than they would have been earlier in the disease cycle, robbing the person and their family of months and years of valuable time.
Scanland says the three FDA approved medications for early stage Alzheimer’s disease are designed to preserve the body’s store of acetylcholine, the body’s memory chemical.
“Drugs like Aricept, Exelon and Razadyne do not add more acetylcholine into the body, but they do slow the decline,” Scanland said. “When should you start taking these medications? As soon as you get a diagnosis.”
Scanland does caution that these medications will not bring your loved one a miraculous recovery, but the medications should not be stopped.
“Too often, families are hoping for that miraculous recovery and when it doesn’t happen, they decide to stop the medications,” Scanland said.
In that instance, what often happens is the loved one begins to act out more, shows increased cognitive impairment and is less able to conduct the activities of daily living such as dressing, bathing and self-care that we take for granted. Only then does the family see how well the medication was actually holding their loved one in place and slowing their decline.
“Keeping on these early Alzheimer’s medications from the early stage into the middle stage of dementia at low levels prevents those behaviors from happening,” she said.
In the early stages of Alzheimer’s disease, activities of daily living are minimally affected, but those cognitive processes involved in problem solving, financial calculations, the decision-making needed for driving and language and word formation are affected. You may see depression and apathy as well in their behavior or mood, Scanland said.
In the middle stages of Alzheimer’s disease, she said you will see more decline in the ability to perform activities of daily living, they may forget routine things, such as planning meals or managing their finances. They may forget to pay bills or pay the wrong amount. This is where denial and irritability begin to be a factor in behavior as they become more frustrated.
As the disease progresses, another medication may be added to the regime, Namenda. Namenda works on glutamate, which controls the firing of nerves, Scanland said. For people who live with Alzheimer’s disease, their glutamate is causing their nerves to over-fire. Namenda works to control and reduce the nerve firings, like a bouncer in a bar, letting in the good and keeping out the bad nerve stimulation.
“Studies show that people on the medications the longest did the best,” Scanland said. “These studies are showing that even in the late stages of the disease, these medications are working.”
Scanland encouraged caregivers to take care of themselves and not to wait for a crisis in their loved one’s health, or their own, to consider placing their loved one in a specialized memory care campus.
“This is a 24-hour job,” she said. “I can’t tell you how important this is. It is impossible to think you have to do everything. People try to be heroes, and it’s not worth it. Sometimes it’s the best thing for the both of you because you can go back to being the spouse or the child and get your relationship back.”
She said it’s best to have those conversations during the earlier stages of the disease because the longer you wait, the more difficult the transition will be on your loved one. When a person is living with Alzheimer’s disease, their short-term memories are the first to go. Multiple moves can really negatively affect an Alzheimer’s patient and lead to more behavioral issues.
When the crisis hits, emotions and stress are high and it can be divisive in a family.
“When we promise our spouse or family member that we will take care of them, no matter what, we really have no idea what the situation will be,” Scanland said.
She offered 10 reasons caregivers should release themselves of the guilt of placing their loved one in care.
First, decline in judgment. This happens in the earliest stages. The decreased math ability can lead to problems paying bills and managing money.
Second, pedestrian and driving safety. Studies have shown that those with mild dementia are more likely to make decisions when crossing the street that could end up causing them to be hit by a car. Driving studies show that even the ability to navigate and understand road signs begins to decline in those early stages, making operating a car dangerous.
Third, adverse drug events. As cognition declines, the possibility of an adverse drug event rises. As seniors age, their bodies react differently to medications, and adding in problems remembering when or how much of a medication to take can increase that risk significantly.
Fourth, immobility and functional decline. At home, you move less and your muscles and joints stiffen. If your loved one is in a senior living community, there are many opportunities for them to stay active.
Fifth, the risk of falls is greater for those suffering from dementia as they struggle more with the activities of daily living. Something as simple as putting on pants, getting out of bed or climbing stairs can lead to a fall.
Sixth, elopement is a risk at home. Those living with Alzheimer’s disease can get lost on a routine path from their home to the store or a loved one’s home and end up in a dangerous situation.
Seventh, money mishaps. When a loved one is confused, they can make poor decisions about money. There are many scams that prey on seniors with memory and cognition issues. It is estimated that four of five cases of this type of elder abuse go unreported to authorities. The most common scams include debt relief, advance fee fraud, fictitious relative in distress, Visa and debit card fraud, ID theft, the sweetheart scam, and home caregivers.
Eighth, nutrition and hydration. Whether it’s a lack of appetite due to medications or losing the ability to plan and make a meal, seniors often suffer from malnutrition. They also often do not drink enough fluids to keep from becoming dehydrated. When a senior lives in a senior living community, they receive monitoring that can prevent these conditions.
Ninth, isolation and loneliness. The risk of Alzheimer’s disease more than doubles in lonely people, and social isolation increases depression in seniors.
Tenth, your first choice for placement may not be available when you experience a crisis. Planning ahead will help ensure your loved one can be placed in the senior living community of your choice.
Early diagnosis, patience, developing a support network for yourself as a caregiver, having the tough conversations and making the tough decisions are all part of the art of managing Alzheimer’s and dementia, Scanland said.