One of the most common frustrations when looking after an older person who has dementia is that you often feel overwhelmed and unsure if you are doing what is best for the care recipient. Dementia following an accident, stroke, or other medical event can be totally or partially reversed, or it can be permanent. Alternatively, progressive dementia has been described as something akin to lights being turned off, one room at a time, and never being turned on again. Whatever caused the condition, the demented brain does not receive messages as it once did, and what works to cope with difficult behavior one day may not work the next. The spotlight this month is on understanding difficult behaviors and managing them.
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Taxing behaviors either start or become worse when dementia is intensified by vision or hearing problems, adverse effects of medication, chronic pain or illness, and acute illness. Some of these troubles can be eased by cutting down on noise and clutter, making sure that lighting and visual contrasts between floors and walls are good, and ensuring that medications are monitored and adjusted for a body that metabolizes them differently as it ages. Gastrointestinal or urinary tract infections, fever, or pneumonia are examples of acute illnesses that can cause a demented person to act out simply because the person may not be able to verbalize their discomfort. An aware caregiver can recognize irritability due to illness and get the sufferer to the doctor or watch for signs of chronic pain and be ready to give an aching shoulder relief with ibuprofen gel or a gentle massage. As physical discomfort is relieved, behavioral issues tend to subside.
In addition to physical reasons that cause people who have dementia to behave in challenging ways, those with memory issues often have difficulty with task-related activities. Many times they just give up because they feel ashamed that they cannot do something. A once simple task, such as brushing one’s teeth or folding laundry, can be daunting to someone with dementia and fussy or belligerent behavior may be the outcome. Reduce their insecurity by starting the task for them. Put the toothpaste on the brush or fold the first few pieces of laundry to get them going. Assisting in a casual, non-judgmental manner helps a care recipient to achieve a “success experience” and preserves the person’s dignity.
People who have dementia might repeat themselves, act inappropriately socially, show restlessness and agitation, become socially withdrawn, wander, hide or hoard things, and follow caregivers around. Things only get more frustrating for everyone if you get angry or impatient when they exhibit difficult behavior.
Those with dementia have no idea they are doing anything problematic because the filters that normally govern behavior are no longer working.
When someone repeats, go with the flow. It can feel like your last raw nerve is about to snap if you hear them ask guests if they want a cup of coffee five times in the space of 20 minutes, but hold on and redirect the conversation. Please, please, please do not correct the person who has memory loss. Although their memory may be faulty, they still feel and respond to emotions. Think about a time when you experienced upset when an acquaintance made a rude or callous remark; you may not remember what was said, but the memory of the way you felt lingers. Apply that logic to how you communicate with someone who is dealing with cognitive deficit.
If your friend or relative starts shedding or fidgeting with their clothing, become curious rather than embarrassed or annoyed. They may be too hot or uncomfortable because something is ill-fitting.
The Alzheimer’s Society advises following six steps to manage difficult behavior:
- Identify the problem
- Look at the situation
- Consider how the person is feeling when they behave this way
- Identify anything the person could be reacting to
- Develop a strategy
- Keep a record
Example: Your dad grew up believing a gentleman always removes his hat when indoors. This morning you are having breakfast at your dad’s favorite café when two men wearing baseball caps walk in and sit down. It is obvious that they intend to continue wearing their hats. Your dad starts muttering loudly about the rudeness of such behavior when it is actually him who is being rude. This is embarrassing for you, and you are painfully aware that his filter for politeness has slipped. What do you do? You redirect his attention immediately by talking about the sausages on his plate or asking him if he likes your new shirt. Each time he looks at the other men and shakes his head or complains about the hat, redirect.
With that example in mind, what do you do in the future – stop going to the café? Not at all. You employ the Alzheimer’s Society’s six-step process:
- Identify the problem: Rude behavior
- Look at the situation: Eating at a café or restaurant
- Consider how the person is feeling when they behave this way: Offended and disgusted
- Identify anything the person could be reacting to: Annoyance at seeing men wearing hats indoors, especially while eating
- Develop a strategy: It makes no difference that societal rules may have changed over the years. Dad is rooted in the past about hat etiquette, so call the restaurant ahead, reserve a corner table, and seat him facing the corner. His attention will be on his table companions and food rather than on other people.
- Keep a record: Make a mental or physical note of how to handle eating at a restaurant, and share the information with others who provide caregiving.
The cliché “knowledge is power” can be adapted to “understanding is power” as understanding is the cornerstone of managing. Learn more by visiting the Alzheimer’s Society website and other professional websites such as the U.K.’s National Health Service website www.nhs.uk. A search for “coping with dementia behavior” will yield much helpful information. If your loved one behaves aggressively, exhibits a loss of inhibitions, engages in inappropriate sexual behavior, or other behavioral problems, approach behavior management with curiosity and respect for their dignity. I routinely counsel families on how to reduce and manage difficult behaviors and know that coping with them can be very challenging. Family caregivers report that it is particularly stressful to handle aggressive or inappropriate sexual behavior when they have not been trained
Kathy C. Faenzi MA is a Clinical Gerontologist and Senior Care Consultant based in San Mateo, CA.
JC Spicer, M.Ed. is a Freelance Social Science Writer and Developmental Editor based in the U.K.