There are nearly 5.4 million Americans living with Alzheimer's today, but Alzheimer's doesn't just affect the person that has it. It also affects the person's family and friends.
Heritage Hill Senior Community in Weatherly recently hosted a presentation by Dr. Verna Benner Carson, a nationally recognized leader in the care of Alzheimer's patients.
The presentation, "Becoming an Alzheimer's Whisperer: A loving and gentle approach to challenging behaviors," aimed to help family members, health care providers and friends decode some of the behaviors they see on a daily basis when dealing with a person who has Alzheimer's.
After being introduced by Lisa Marie Halecky, marketing/admissions director for Heritage Hill, Dr. Carson asked the audience "What makes an Alzheimer's whisperer?" The answer, she explained, is the ability to enter the world in which the patient is living.
"That is a challenge for us because it's hard to suspend our reality to enter theirs," she said, adding that it is the caregivers who must make the change because the patient cannot change anymore.
She also equated the mind of an Alzheimer's patient to erasing a chalkboard in grade school. Short-term memories are erased every five minutes.
Carson added that caregivers need to be creative to help alleviate any aggravation on the patient's part and if the response is agitation, step back, wait five minutes and try again with a different strategy. And most importantly, always remember to smile.
The brain and Alzheimer's
Carson pointed out that different areas of the brain are affected during the stages of Alzheimer's.
"All challenging behaviors are linked to brain damage," she explained.
For example, repeating questions and memories is a result of the hippocampus being affected. In this area, answers to questions and completing events, such as eating, are forgotten.
Emotions that become erratic are a result of limbic system damage; while not having time awareness is damage to the temporal lobe and not knowing how to use an object is a result of damage to the occipital lobe.
When a patient continually wants to eat or is cold all the time, it is a result of the hypothalamus being damaged. This causes the person to never feel full, even though they just ate. One suggestion Carson had for caregivers experiencing this problem is to give the patient constant access to food, such as crackers, fruit or cheese.
"It's OK if they gain weight now," she said. "At the end, they can lose up to 30 percent of their body weight."
She also noted that a trick to getting a patient to eat who doesn't want to eat anymore, is to make it sweet.
"It may seem weird to us, but put a squirt of syrup or chocolate on the food, and the patient will eat it."
Carson added that the patient's motor strip, which controls walking, sitting up, having the ability to go to the bathroom and more, will be affected in the middle of the disease.
Carson explained that a person with Alzheimer's will revert to a child.
"If you have Alzheimer's, you will experience adulthood once, but childhood twice," she said, adding that by the end of the first stage of the disease, the patient will have reverted back to being 5 years old; by the end of the middle stage, 2; and by the end of their life, a newborn.
She added that caregivers need to ask themselves about the actions they are seeing from the patients.
"If I saw this action in a toddler, how would I handle it?" she asked. "If you need more advice, look at a pediatric book and apply the answers with the patient's behavior."
Carson pointed out that the middle stage of Alzheimer's is usually the most challenging for the caregivers because that is when the breakdown of most adult behaviors occurs. During this stage, many patients don't recognize family and friends; have problems with organizing their thoughts; find dressing and bathing to be hard tasks; and are fidgety, irritable or suspicious of everything around them.
She suggested to help alleviate frustrations, make sure to initiate familiar activities, such as folding laundry or separating change. These activities can be done by the person to make them feel as if they are helping, and it can help the caregiver by giving them something to occupy the person a number of times throughout the day.
"Know the person's history so you can figure out a repetitive action that will make them feel good," she said. "It keeps the character of the patient and it keeps you patient."
Carson added that the patient in the middle stages of Alzheimer's can still perform self care, read words and follow directions, but may need some verbal clues. Help them by providing cues to engage the action at hand.
Some examples include labeling drawers so the patient can read the labels and feel like they are still independent; use a notepad to write the answer to the patient's question so they can read it.
A few suggestions she offered to also make life more pleasant for both parties is to take away long mirrors so the patient doesn't think there is a stranger in the house because they don't recognize themselves; let them bathe anywhere by using a wash basin instead of trying to shower them; and find creative ways to do things that come naturally in the patient's life.
Another reason for challenging behaviors could be something many caregivers don't even realize pain.
Carson explained that pain is often an underlying problem and could be managed by Tylenol or other pain treatments.
Keeping them safe
Many Alzheimer's patients become wanderers during the course of the disease.
To help combat wandering, Carson said that you could do a number of things, including putting locks higher on the doors; use door alarms; or tape a brown or black rug in front of the door because a patient believes it is a hole so they won't try to cross.
If a patient does get out of the house and wanders, it is critical to find them in the first 24 hours or their survival rate greatly decreases.
Carson said that most wanderers are dominant wanderers, meaning that if they are right-handed, they will most likely wander to the right.
Other ways to help locate them could be to utilize a GPS bracelet if it is available in the area; and to try and put yourself in their shoes, because an Alzheimer's patient, like a child, will not reveal themselves if they are lost.
Making life easier
for both parties
Carson wrapped up the presentation by outlining her tips for caregivers that will help make caring for an Alzheimer's patient less frustrating and more enjoyable.
Ÿ Don't quiz the person because it only leads to them getting frustrated.
Ÿ Don't argue with the person because they don't remember the correct story or action.
Ÿ Sometimes telling them the truth, such as their husband died 10 years ago, does hurt. They will have to relive the pain of learning of his death all over again as if it is the first time. Tell them that he just isn't here right now.
Ÿ Remember the five-minute rule. If you got an agitated response the first time you asked, step back and give the patient five minutes before trying again.
Ÿ Be positive and smile. This helps the patient feel more at ease.
Ÿ Be willing to enter the person's world.
Ÿ Use gestures to help the person understand.
Ÿ Always approach from the front because a person with Alzheimer's can get startled very easily.
Ÿ Communicate on the person's level.
Ÿ Know the person's story.
Ÿ Use the FAST scale, which was designed by Dr. Barry Reisberg to evaluate a patient's stages of dementia, to help determine which stage a patient is in.
Ÿ Help is available through various sources. Contact the Alzheimer's Association, local Area Agency on Aging or hospice to learn about services.