Understanding the Challenges of Brain Change
In our field of eldercare, we work with people living with brain change who may experience more than memory loss and mild confusion; they can have unpredictable reactions to the stimulus in their environment that may be disruptive to their quality of life and to those around them. For example, Alzheimer’s disease causes neurons in the parietal lobe to die, impairing the person’s ability to interpret touch and move their body in our three-dimensional world. Caregiving in these cases requires more and more physical touch to assist with movement, bathing, dressing, and eating. It is therefore not surprising that we encounter challenges that include resisting care, irritability, anxiety, agitation, and sometimes aggression.
The many changes a person experiences with dementia are occurring while the person’s limbic system (the brain’s fright-fight-flight response) is fully functioning and can go from calm to catastrophic in a flash.
Becoming a Compassionate Detective
Approaching this issue from the perspective of a detective who is searching for a better understanding of what triggered such a reaction is a helpful step toward finding effective and compassionate solutions. If we can understand what the triggers are for anxiety, agitation, or aggression, we can create an approach to care that avoids those triggers.
The plan for care can and should include a detailed strategy that demonstrates our knowledge of the resident’s health and history and that takes a proactive approach to their daily care needs. What does that look like?
Building an Individualized Plan of Care
First, the plan of care can include clear and kind verbal cues, and visual ways to communicate without words. Our own facial expressions and body language communicate our intentions to be safe and helpful in meeting their needs. In addition, we can apply gentle but firm touch on proprioceptive areas, such as the hips, shoulders, elbows, and knees, as helpful nonverbal ways to communicate when and how to move their body during care.
A Practical Example
I know that Mrs. Patterson becomes anxious and sometimes agitated during bed baths. She has grabbed my arm and cried out recently during care, catching me by surprise because I was too focused on the tasks at hand. By organizing my supplies ahead of time and then approaching with the intent to connect with her first, I will be more successful in meeting her needs without triggering her.
By smiling and greeting her with an open hand that leads to a handshake, I can then connect with her with safe physical contact. Next, I can continue to connect by asking her a question that demonstrates I am someone who knows her.
“Good morning Mrs. Patterson, I am so happy to see you. I noticed your favorite roses are in bloom outside the window. They smell wonderful. I would like to help you get ready for the day, and was wondering if you would like to wear your pink jumpsuit or the blue one? I have a nice warm tub of water here. Let’s use this washcloth here, if I may begin, and we can wash your face with the cucumber cleanser you like so much.”
As I work with Mrs. Patterson, I will apply gentle but firm pressure to her hips as I guide her to move side to side during bathing. I will apply my hands gently under her knees when I need to bend them up or down while I assist her with dressing. Verbal cues that include asking permission—“If I may, I would like to help clean under your arms”—plus the physical cue under her elbow to lift up will make the experience much easier for both of us.
Positive Physical Approach
This approach includes the well-tested and amazingly effective work of Teepa Snow and her outstanding program, Positive Physical Approach.
When Additional Support Is Needed
Sometimes we still see challenging situations and may need to further find ways to avoid agitation and especially prevent unsafe behavior. Working with the primary care doctor is often needed to alleviate pain that could be an underlying source of agitation. Occasionally, we need to work with a geriatric specialist who can prescribe and monitor the use of psychotropic medication.
Usually, when we reach out to physicians and family for medication assistance, it is due to dementia-related psychosis or hallucinations. In those cases, we report caregiver observations and non-medication strategies that we have tried for many weeks.
Using a Behavior Checklist
A behavior checklist can help all concerned when taking steps toward medication assistance. For frail elders being evaluated for psychotropic medications, a behavior checklist is a more neutral tool to report to healthcare providers.
A detailed checklist empowers caregivers to think about the issues and behaviors as they try to identify and target symptoms, rule out underlying medical or environmental causes, and carefully monitor potential medication side effects. [1, 2, 3, 4]
Any assessment used should also ensure that medications are only used as a last resort, at the lowest effective dose, and for a strictly limited duration. [1, 2]
Key Components of the Assessment
A comprehensive behavior and medication monitoring checklist generally tracks four areas: [1, 2]
Symptom Triggers & Environment: Before considering medication, providers assess environmental and physical factors (e.g., pain, dehydration, disruptive noise, or unmet needs) that might be causing the behavior. [1, 2]
Target Behaviors: The checklist defines specific, quantifiable behaviors requiring intervention, such as physical aggression, wandering (if dangerous), delusions, hallucinations, or depressive symptoms. [1, 2]
Monitoring & Side Effect Tracking: Because frail elders are highly sensitive to central nervous system medications, checklists monitor for adverse reactions like oversedation, unsteadiness, orthostatic hypotension, and involuntary movements. [1, 2]
Dosing and Efficacy: The tool tracks medication dosage, frequency, and whether the targeted behavior has actually improved. [1, 2, 3, 4]
Clinical Tools for Safe Medication Management
I also learned that the American Geriatrics Society has developed an assessment tool to help physicians as they navigate issues with patients over 65. Below are two clinical tools designed to prevent the misuse of psychotropic medications.
- American Geriatrics Society (AGS) Beers Criteria: The gold-standard clinical reference used to identify potentially inappropriate medications for adults over 65. It helps providers weigh the risks and benefits before initiating psychotropics. [1, 2, 3]
- ASEBA Older Adult Behavior Checklist (OABL): A widely utilized tool that gathers comprehensive caregiver and clinician reports on cognitive, emotional, and physical symptoms. [1]
- AIMS (Abnormal Involuntary Movement Scale): A standardized evaluation used specifically at baseline and periodically during antipsychotic use to screen for movement disorders. [1, 2]
- Psychotropic Self-Assessment Tools: Many local health authorities and facilities (like the Aged Care Quality and Safety Commission) provide specific checklists to ensure informed consent, family involvement, and regular medication tapering trials are documented. [1, 2, 3]
Every Behavior Is Communication
A challenging behavior related to dementia is a call to action that is compassionate and respectful for all concerned. The behavior itself is communicative of an unmet need that could be physical pain, emotional distress, better training of staff, or a change in approach.
What may at first appear to be hopeless often has a solution when we seek to understand it and communicate effectively with the prescribing practitioners and family members.