Wednesday, September 3, 2014
What the Chaplain does not see … but hears about later, sometimes.
The behind the scenes experiences that go on in the lives of family caregivers of patients with dementia can be traumatizing. Alzheimer’s aggression is not uncommon. Where does this leave the Chaplain? How does he/she respond to the family caregivers as they try to process the rage that explodes all over them in such an experience? The caregivers, no doubt, are already weary and could very well be worn out. They need the Chaplain to just listen and empathize with them. A gentle suggestion of respite care might be in order, but an empathetic presence is always in order. As you read the following story from “A Place for Mom” (http://www.aplaceformom.com/senior-care-resources/articles/alzheimers-aggression) ask yourself how you would be that empathetic presence for this family. Charlie Powell feels like he lost his dad a long time ago. His dad, who has Alzheimer's disease, doesn't just forget who Powell is-he sometimes becomes violent. "Once, me and mom disabled his car so that he couldn't drive it, and he soon realized what we'd done," Powell, 50, says. "He rushed across the living room and literally growled at me like a bear in the most frightful way. Thirty seconds later, he didn't know he'd done it, and everything was fine." The "bear incident" is just one of many that eventually caused Powell and his family to put their 86-year-old father into a nursing home. "Once, the doctors noticed that mom's eardrums were both ruptured, and they realized dad probably slapped her upside the head and cupped her ears." Unfortunately, Alzheimer's aggression is fairly common among Alzheimer's patients. There's cursing, hitting, grabbing, kicking, pushing, throwing things, scratching, screaming, biting, and making strange noises. More than 4.5 million Americans are diagnosed with Alzheimer's disease every year, and up to half can show some of these behaviors. The number of total Alzheimer's sufferers is projected to balloon to 16 million by 2050. Alzheimer's aggression is one of the main reasons most people put their parents in nursing homes. Fortunately, new medications and coping methods can help, though agitation and aggression are still a misunderstood aspect of Alzheimer's. "The public thinks Alzheimer's is a memory disease," says Dr. Ramzi Hajjar, a geriatrician at St. Louis University in Missouri. "But, in fact, there are lots of neuropsychiatric symptoms. Alzheimer's patients often develop delusions. They think their family is stealing things from them, for example. And they get very aggressive and irritable towards their spouse." He stresses that families need to always remember that Alzheimer's aggression really has nothing to do with them. "The child always wants to take it personally, which causes unnecessary anxiety," Hajjar says. What's Behind the Behavior? No one knows for sure why some Alzheimer's patients lash out and others don't, but one University of Kansas study showed that recognition was the strongest predictor. Forgetting what something was, or what was inside something, was the most common cause of aggressive behavior. Other studies have shown that Alzheimer's patients sometimes act out because of side effects like headaches, constipation, and nausea from some anti-anxiety medications such as Xanax® (alprazolam), Ativan® (lorazepam), and BuSpar® (buspirone). Patients who can't communicate often express their discomfort from those symptoms by becoming even more agitated and combative. The first step in managing difficult behavior in the care for Alzheimer's patients is to find out where it's coming from and what it means. Does the agitation or combativeness mean the patient is hungry or thirsty or scared? Is it a reaction to something threatening or uncomfortable in their environment? "I've seen people strike out because of their distress," says Dr. Ruth Tappen, director of the Louis and Anne Green Memory and Wellness Center at Florida Atlantic University in Boca Raton, Florida. "Once, a Holocaust victim would have his memories return at night, and he'd get aggressive, yelling and carrying on at his wife; twice he even brandished a knife. He was defending himself from long-gone dangers." Other times, agitation starts when patients get frustrated with themselves, as simple memories start slipping away. They might forget where they put the keys, or what time their dinner appointment is that night. After asking a few times, everyone around them becomes irritated, and they get agitated. But it's sometimes hard to know exactly why some lash out. That's what author Jacqueline Marcell learned, the hard way. Marcell, who wrote the book Elder Rage after an entire year of experiencing her father's Alzheimer's aggression, says she grew to learn what situations would trigger her dad's outbursts. But first, it took a year of doctor visits to even diagnose him correctly with Alzheimer's. Managing and Treating the Aggression Using medications to manage aggressive behaviors in dementia patients is considered very controversial. Doctors have tried using traditional (first-generation) antipsychotic drugs such as Mellaril® (thioridazine) and Haldol® (haloperidol), but their effectiveness was limited and carried some unpleasant side effects such as vomiting and nausea. Atypical or second generation, antipsychotics (such as Seroquel® and Risperdal®) have been found to be somewhat more effective in reducing behavioral problems, but they have not been approved for use in dementia patients by the FDA. In fact, the FDA has issued a warning in April, 2005 regarding "atypical" (second generation) antipsychotics in dementia patients. The warning states "that older patients treated with atypical antipsychotics for dementia had a higher chance for death than patients who did not take the medicine." Because this warning does not actually prevent doctors from legally prescribing these medications for this type of "off-label" use, it is extremely important that families understand the potential risks involved and proceed with caution. Fortunately, drugs aren't the only answer. There are other ways that you can improve your situation. The following are some techniques and strategies that have helped many people successfully care for Alzheimer's patients and manage the Alzheimer's aggression: Label and use signs, suggests Beth Nolan, PhD, author of the University of Kansas recognition study (see above: What's Behind the Behaviors). Place signs on rooms to say what they're for, put name tags on guests when they visit, and put labels on common items, like clocks and telephones. Tape explanatory phrases on doors or cupboards to tell them what's inside. Know what the triggers are, and try to divert them. Typical triggers include getting people undressed for showers-they find the shower rooms cold and echoing. Or, being in a crowd can trigger the fear of getting lost. "If what you're doing is causing them to react, stop and step away," says Patricia Drea, RN, a 20-year eldercare veteran who works with Visiting Angels, a company that provides in-home care for the elderly. "Then, redirect them to another activity. Say, 'Here, let me help you stand up,' then move them to the next thing you'd like them to do." Try to distract the person with a pleasurable topic or activity. Arguing will make things worse. If necessary, leave the room and give the person time to calm down. Use logic and reason. "When my mom-who also had Alzheimer's-left her watch in the sugar bowl, I didn't accuse her," Marcell says. "Instead, I said, 'Mom, why is there a watch in the sugar bowl?' She'd say, 'I don't know,' and I'd say, 'How do you think it got there?' Using logic helped her a lot." Validate their feelings. Tell them it's OK to be frustrated, or sad, or lonely. Use a gentle tone and reassuring touches. Studies consistently prove this works. "Always smile, and look kind and gentle," Drea says. "Your face is an important signal that everything is alright." Stick to a regular routine. This will help minimize the number of unexpected and stressful events. Ignore the angry behavior-if distraction and support do not work. If the situation is threatening, make sure he is unlikely to harm himself and stay clear until he calms down. Maintain a sense of humor. "Anticipating that there will be ups and downs, and maintaining patience, compassion, and a sense of humor will help you cope more effectively with difficult behavior," says Catherine Johnson, PhD, a psychologist who specializes in dementia at St. Joseph's Hospital in St. Paul, Minnesota. "It's important to remember that it's the disease, not the person, causing the behavior." Try music. Sometimes singing an old favorite song can get someone to calm down instantly. The American Academy of Neurology recommends using music to reduce many problem behaviors. They say it's most effective during meal or bath time. If you don't sing, play a song from their old collection. Learn how to debrief after an incident and identify what caused it. Ask yourself, "'What can I do differently the next time, to avoid the aggressive reaction?'" Johnson says. "Learn to resolve the emotional reaction you as a caregiver had. Then, you can move forward effectively. Take care of yourself." Seek support for yourself as a caregiver. Finding support groups and counselors to help you cope is one of the most important things you can do. Not only can you help yourself deal with the difficult times, some of the people you meet may have some useful advice on managing the aggression. Some good places to begin include The Alzheimer's Association (www.alz.org) and the Alzheimer's Disease Education and Referral Center (ADEAR) (www.alzheimers.org). Perhaps the most comforting thing about Alzheimer's aggression is that, for many patients, it's a phase that will pass. While the dementia itself is irreversible and will continue to worsen, for many patients the aggressive behaviors do seem to subside over time. Because this is a phase that can last for years, however, trying to wait it out without dealing with the behaviors is usually not an effective strategy for coping with the problem. For some, the challenges of handling Alzheimer's aggression can become too great, and they may decide that they must place their loved one in a skilled nursing facility. Although this is never an easy decision, those like Charlie Powell know they have done the best they can, and that relying on the professional care available in a nursing home is the smartest choice. "I know my dad is getting the best possible care now," Powell says. "And that's all that matters."