Nancy Hendley,
Dementia Care Trainer

Helping Caregivers Address Challenging Behaviors During COVID-19

During COVID-19, challenging behavior issues may be more pronounced in part because both the caregiver and care recipient are quarantined. Changes in routine, the closure of adult day programs, and disruptions in the delivery of care, have adversely impacted life for all involved. Fear of disease transmission has complicated our normal ways of relating to each other. Using excerpts from the Family Caregiver Workshop, we will explore possible ways to navigate these difficulties by seeking the root causes of challenging behaviors.

Finding equilibrium in this exceptionally difficult time requires a “team” approach. This is where CaringKind can be of extraordinary help. Reaching out to our Helpline, attending our Education meetings, and enrolling in a Family Caregiver Workshop can help diminish isolation — the feeling that we have to manage all of this on our own and afford caregivers the support that is needed.

A core principle in our workshops is that all behavior is communication. As caregivers, we must keep in mind that as people with dementia are losing the ability to express themselves, they may “act out” or behave in ways to alert us that something is amiss. We know that simply asking the person to stop rarely works, and sometimes causes more distress. Taking the time to discover the source of the person’s behavior will provide a better opportunity to address their unmet needs and ameliorate future problems or difficulties.

One of the exercises offered in the Family Caregiver Workshop assists caregivers to identify possible triggers for challenging behaviors.

Environment

Is the environment too noisy? Unexpected or unexplained noises can cause a person to be fearful. Is there too much or too little stimulation? Too much going on in an environment can be confusing and overwhelming. Too little stimulation can leave the person unsure of what they are supposed to do. Is there clutter causing confusion? It can be difficult for the person to do what you ask if their space is not clear. Is there enough light? Shadows can be frightening for the person. Is there a clear routine or schedule? Disruption to routines can be disorienting to the person and cause anxiety.

Changes brought on by disease progression, physical health, or emotional state

Is the person’s behavior due to disease progression? Knowing the stages can help to prepare us for changes. Are they becoming increasingly frustrated by the inability to express themselves? Can we find simpler ways to communicate? Are these changes in the brain causing confusion for the person in tasks that they were able to complete previously? Is the person in pain? The person may not be able to report their pain. How can we determine if they are indeed in pain? Are they constipated? Is there a UTI? Is the person simply uncomfortable? Do they need a hug or to have their hand held?

Behaviors caused by us, the care-partners

At times, we are causing the person’s behaviors. Are we relaxed? The person’s mood is often a direct reflection of how we, the caregivers, are feeling. Are we asking questions constantly or making unreasonable demands? People with dementia often complain of being “bossed around” — instead, can we determine their preferences? Allow them to be in charge? Are we approaching the person slowly? Are we using too much language? Are we ignoring the person or not offering enough activity? Do they need affection? Are we asking the person to do tasks that are too challenging/too simple?

These are the broad categories — the number of triggers is, of course, greater than I have listed here. Once we have an idea of what might be a cause, we can work to eliminate the distress. Providing comfort is a good place for us to begin. If we see behavior as discomfort or as an unmet need, our response can be based in providing comfort, or meeting the need, rather than stopping the behavior. This gives us a better chance of succeeding.

You are not alone. Please reach out to CaringKind by calling our Helpline at 646-744-2900. We are here for you.


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