“Dementia” has become a catch-all term to talk about a range of brain diseases. Common types of dementia are Alzheimer’s, Lewy Bodies, Vascular, and Parkinson’s disease. These dementias have a range of difficult behaviors associated with them that can be challenging and frightening to family caregivers. It is important to understand that a range of factors can produce these symptoms: disrupted sleep, pain, medication side effects, impaired senses, depression, etc.
Symptoms of the Disease
One of the biggest questions that families ask about these difficult behaviors: “is it the person or is it the disease?” We are used to judging people based on their behavior because we know people can control their behavior. In fact, we tend to value people’s behaviors far more than their words. The parts of the brain that control behavior are impacted by dementia. For caregivers, it is important to make a mental shift and start looking at difficult behaviors as symptoms of a disease and not the expression of a person. It can often feel like actions are directed at caregivers in retributive ways: “Mom threw out the grocery list I made her for the third time this week and I know she is just getting back at me for not visiting more often.” At other times, it may feel disorienting and embarrassing: “Dad started cursing out the waitress in public. That is not like him. I can’t believe he would humiliate me like that.” These scenarios may seem familiar, especially as the disease progresses. The key to remember is to not take behaviors personally. It is not about you as a family member or caregiver. Difficult behaviors are symptoms of dementia not an expression of the loved one with the disease.
Setting the Tone
Newton’s 3rd Law is: For every action there is an equal and opposite reaction. This is true of our behaviors as well. A caregiver’s actions and approach can cause a negative or positive reaction to care. Our approach really matters. Watch your tone as you communicate your words, body language and facial expressions. For an individual with dementia your words themselves will have the least amount of impact when it comes to communicating. The non-verbal cues hold the most power. When there is a situation where a loved one is emotionally stuck or upset, dementia educator Teepa Snow, gives three statements to de-escalate the situation:
- “I’m sorry. This is really hard.”
- “I’m sorry that happened to you. That shouldn’t have happened.”
- “I’m sorry. I didn’t mean to embarrass you.”
How to Respond Instead of React:
When it comes to responding to difficult behaviors, it can be helpful to take a moment and remind ourselves as caregivers that we have the power to choose how to respond to a situation. A “reaction” is a personal/emotional response to a situation influenced by our expectations and fears. A “response” is an intentional reaction to a situation that is purposeful and not personal.
Here are a few tips for intentionally responding to a few common difficult behaviors:
Anger and Agitated Behavior: Simplify the environment including sounds, physical clutter, guests, etc. Try redirecting them with an activity such as a walk. Remain calm while showing concern for their emotion. Using their favorite music strategically can often help redirect a person and shift their mood.
Anxiety, Hallucinations: Have a physician review medications, as a drug imbalance can trigger or heighten these symptoms. Increase lighting in hallways and stairwells to improve visibility at night. Respond to the emotion and acknowledge their ways of expressing feelings of vulnerability, worry, etc. Be diligent in investigating suspicious activity such as stolen items, to make sure that they are not being taken advantage of by another person or organization.
Hygiene Issues: When it comes to incontinence, bathing or dressing, these common issues can be a source of embarrassment and confusion for those with dementia. Use gestures as a way of cuing individuals to the next steps in the process as they may not recall what to do next. Offer choices around each task in a “this/that” format instead of a “yes/no” format. For example, “Would you prefer to have a bath now or right before bed to help you relax?” instead of, “Do you want to take a bath now?” Help loved-ones simplify tasks one step at a time. Give plenty of space and time around tasks as rushing will exacerbate confusion and increase frustration.
Wandering, Wanting to Go Home: Safety is one of the most important factors in addressing wandering behavior. Having a plan in place if the person should wander away from the home will save valuable time in an emergency. This should include a current photo of the person. Make sure the environment inside and outside of the home is secure and free from items that may increase fall risks. Many individuals will have instincts to return home. This may be to a home they remember from their childhood or a former house they lived in. Both can be expressions of a desire to return to a place where they felt secure. Respond to the emotional aspects of this instinct by asking what they are feeling and reassure they will be taken care of. Redirect someone into a time of reminiscing about “home” through photos, music or stories.
Repetitive Speech and Questions: Keep in mind that an individual with dementia may not be able to give answers to questions. Encourage attempts to communicate even if you’ve heard the same story a thousand times before. Resist the urge to argue about inaccuracies. Enter their world and ask questions about it. Document information, such as the date and time of an appointment on a piece of paper for the individual to hold. This can be reassuring for some.
Loss of Words, Communication, Unfiltered Comments: The pre-frontal cortex at the front of the brain is the mission control center that controls impulses, planning, judgment and reasoning. While the sections of the brain that control language are also impacted by the brain disease, they are often able to preserve “automatic language.” The combination of these sections of the brain being impacted by the disease can result in individuals using forbidden words, such as swear words, inappropriate slurs, etc. This loss of language can be a source of frustration and isolation for the individual. Play to their strengths and abilities when it comes to communicating. Preserved automatic language also includes song lyrics, religious or patriotic language and songs. When you’re having difficulty understanding, some helpful questions to ask are, “Can you show me what you do with it?” or, “Can you tell me more about it?” Make good use of gestures as a tool for communication as well.
Sound Options for Dementia Caregivers
Losing a loved-one to dementia can be a chain of little losses over time. Not only is it emotionally challenging, but for family or caregivers, it can be difficult to know how to respond effectively to the care needs that change from day to day. At Sound Options, our caregivers are invested in serving families impacted by the dementia epidemic. As RNs and MSWs, our Care Managers are trained in the care of older adults and individuals with dementia. They are able to oversee and guide care with compassion and creativity, navigate families through what to expect, and arrange appropriate care services so family can just be family. If you are caring for a loved one with dementia, you have Sound Options. Expertise and support are a phone call away. 800.628.7649.
Published on October 30, 2016.