Find Resources to Enhance
the Primary Source
for Pastoral Care Support in the Hospice Environment
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 () and the Alzheimer's Disease Education and Referral Center (ADEAR) ().
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."
Adaptability: The Most Necessary Trait for the 21st Century
Without question, change is the mantra of the 21st century.
There have been major changes in hospice regulations: decrease in re-imbursement rates, higher demands for documentation from Medicare, regulations galore, and pressure to perform and survive. These types of changes have brought incredible stress to the leadership of hospices across the nation. Some hospices have not been able to survive. In fact, the myths associated with hospice have taken on a life of their own. From physicians to potential patients and their families, poor information is winning the day. In the IDT meetings the stress of regulatory oversight is taxing nurses with more documentation than they have had to deal with in previous days. And, more is expected of Chaplains regarding documentation and performance standards. In the not too distant future hospices will be reimbursed based on their scores on a family satisfaction survey. The scrutiny is unlike at any time in American hospice history. The IMPACT Act will require hospices to be surveyed once every three years to make sure the organization is competent and efficient.
The Chaplain is the soul and conscience of the IDT. I have noticed that as the Chaplain’s demeanor goes, so goes the Team. That is a very broad statement but I believe it is true. The Chaplain has the power of influence. He or she usually opens an IDT meeting with an inspirational presentation and prayer (in many cases). The Team looks to the Chaplain for stability and strength. Our Chaplains are doing a great job supporting their Teams by actively caring for the Team members and through ancillary actions such as The Blessing of the Hands, Celebrations of Life, Memorial Wreath, and the daily work which highlights their clinical skills. The underlying element that makes the Chaplain so effective with the IDT is the characteristic of adaptability. When change is announced or experienced, adaptability requires a calm demeanor as evidenced by a relaxed facial expression and body language. If there is a need for a decision, the Chaplain will remain poised and use his or her wisdom in making a decision. In conclusion, change is upon us. This is not a new phenomenon. The question boils down to "will you be flexible and adaptable?" Bless you, Chaplain Friends, in your great work.
Chaplains as Conduits of Hope
Caregivers shoulder physical, financial, emotional, and spiritual issues that for most would be back-breaking. How many of us in hospice and palliative care chaplaincy haven’t witnessed the exhaustion of the caregiver of an AD/dementia patient? or of the Parkinson patient? or ALS patient? That is not to exclude the stress and mental, emotional, and spiritual exhaustion caregivers of COPD, cardiac, or cancer patient’s experience.
It is in the purview of the Chaplain to foster hope in the caregiver. How? “Previous research conducted by Benzein and Berg [Benzein E, Berg A. The level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Palliative Med. 2005;19(3):234–240.] noted that family members of patients in palliative care had significantly lower hope than the patients, indicating that the family members' suffering may be greater than the patients. One reason for the lower level of hope noted by Benzein and Berg was that the needs of family members of patients in palliative care were insufficiently met, especially in regard to information and communication from healthcare professionals. Caregivers in the study by Perreault et al [Perreault A, Fothergill-Bourbonnais F, Fiset V. The experience of family members caring for a dying loved one. Int J Palliat Nurs. 2004;10(3):133–143.] also identified the lack of support from healthcare professionals as a factor that negatively affected their caregiving experience. Thus, it was postulated that encouragement and support offered by healthcare professionals can provide family caregivers with the strength, confidence, and comfort necessary to participate in the caregiving process, which can ultimately foster hope and lead to a positive experience for both the family caregivers and their loved one.[Benzein and Berg] Similar findings were noted by family caregivers in the current study, indicating that physical support, informational support, and reassurance offered by healthcare professionals and other supportive individuals were necessary to maintain hope during the caregiving experience.” [The Lived Experience of Hope in Family Caregivers Caring for a Terminally Ill Loved One, Sara S. Revier, RN, ACNS-BC, Sonja J. Meiers, PhD, RN, Kaye A. Herth, PhD, RN, FAAN Journal of Hospice and Palliative Nursing. 2012;14(6):438-446.] (emphasis mine)
Each Chaplain will have to decide how this information informs their approach to spiritual care, but there are several huge targets at which to aim one’s care: informational support, encouragement, and reassurance. While it seems that these three arenas of support require a good bit of talking, they also require a good bit of listening. I can recall listening to the exhausted pleas for help of the daughter of one of our dementia patients as she was at the end of her patience and emotional strength after what seemed to be several sleepless nights. She needed to be heard more than she needed to be talked to. I did, however, give the nurse a call to explain some of the issues she was having with her mother and have her provide education on those
matters. The daughter just needed to talk it out. In addition to listening and affirming the pain, this caregiver was experiencing I provided the intervention of clinical prayer. For this woman, prayer inspired new hope even in her most exhausted moments. It provided a sacred break in her world.
To further inspire your thinking and brainstorming the ‘how’ to being a conduit of hope, The Seven Desires of Every Heart by Mark Laaser and Debra Laaser provide an outstanding presentation of the desires of every individual. Those desires are: to be heard, affirmed, blessed, safe, touched, chosen, and included. Professional hospice and palliative care Chaplains are trained to actively/attentively listen in order to understand their clients and to help them feel safe through pastoral counsel which will focus on relieving anxiety and the “What ifs” that have become so prominent in this chapter of their lives. Further, through a caregiver support group the Chaplain leads, caregivers will