Diagnoses of Alzheimer’s disease are increasing at an alarming rate, which in turn reflects an increase in the necessity of caregivers. It is a fact that either you or someone you know is likely providing the primary caregiving for a loved one diagnosed with Alzheimer’s disease.
This debilitating, and ultimately deadly disease, impacts the person affected, but also impacts family members, friends and caregivers. If you are one of the millions of people who have cared for a person affected with Alzheimer’s disease and other forms of dementia, you have experienced first-hand the frustrations and challenges.
Family members and caregivers are often referred to as “the other victims.”
Alzheimer’s disease and other forms dementia are challenging to the caregiver, not just as a result of the cognitive functional decline, but also because your loved one often shows increasing amounts of challenging behaviors. Caring for a loved one suffering from memory, language, judgment and reasoning problems can be the hardest task one has to ever undertake.
For example, a person with dementia will refuse directions and care, wander, get agitated, engage in repetitive conversations, and even harm their caregivers. Your loved one, who at one time may have been agreeable and friendly, now has become paranoid, stubborn and aggressive. The stress and frustration that accompanies watching and helping your once-functioning loved one carry out the simplest tasks can be overwhelming.
Even patient caregivers may break down under the constant pressure of managing the challenges and frustrations of this difficult illness.
One of the strategies to understanding the behaviors of dementia is tolerating and accepting that the caregiver will become the repository of coping skills for the affected loved one. In other words, the progressive nature of Alzheimer’s disease steadily removes your loved one’s ability to cope with their environment and this will shift the need for coping onto the caregiver.
More specifically, the front of the brain, called the frontal lobe, controls our impulses and reasoning. If you have a teenager, you have seen this part of the brain in its under-developed state. This occurs when you have looked at your teen and asked “what were you thinking?” Lapses in judgment and insight can lead to poor decision making.
The aging brain affected by dementia begins to shrink and lose its ability to reason, just as the young under-developed brain. As deterioration of the frontal lobe progresses, impulse control diminishes and there is a loss of what is often referred to as a “screen.” As a result, your loved one may say whatever is on their mind.
They no longer have the normal controls that inhibit impulses. Many caregivers feel embarrassed when they take their family member out in public due to incidences where they blurt out inappropriate language or thoughts. Some may use racially insensitive language. In addition, sexually inappropriate language can also be disturbing. Sexually inappropriate behaviors may manifest and become difficult to handle.
Caregivers for loved ones displaying these behaviors may not understand that these behaviors are not self-controllable. Therefore, it is necessary for caregivers to become educated and to turn to professionals who can attempt to medically stabilize such dangerous or out-of-control behaviors.
Another strategy to understanding the frustrations of dementia is to realize that as the ability to verbally communicate declines, your loved one will utilize their behavior to communicate in other ways. Just as a toddler uses non-verbal cues to express their needs and wishes to their mother, it is essential that caregivers interpret a loved one’s challenging behaviors as attempts to express their needs.
Taking all of these strategies together, this encourages a perspective change: Instead of determining ways to minimize challenging behaviors, it may be more productive to understand your loved one’s attempts to cope and communicate their frustrations. Two common examples of stereotypical challenging behaviors include “sundowning” and wandering.
Sundowning is when a person with Alzheimer’s becomes agitated, irritable, fidgety or restless at about the same time each day, and this usually occurs in the late afternoon or early evening — hence the name. This behavior is often one of the most frustrating behaviors to cope with, since your loved one does not understand why they feel so agitated.
This is similar to an overly-tired toddler that may “bounce off the walls” around bedtime. To understand sundowning, it is vital to understand that the behavior is not intended to be malicious. Part of the solution may be to adjust your loved one’s activity schedule so that taxing activities are earlier in the day and calming, simple activities take place later. If the sundowning has a repeated timing, then the caregiver can intervene by creating a soothing distraction, such as going for walk, that starts before that anticipated time.
Wandering is one of the most stressful behaviors that caregivers face due to the obvious risks of getting lost or injured.
Wandering can be caused by disrupted sleep patterns or by disorientation of time or place. Attempts to cope with wandering by arguing or trying to rationalize with your loved one will often increase their agitation.
It is far better to keep the idea of rationalizing or any other insistence of reality-based discussions out of the conversation with your loved one and to instead, try to view the situation through your loved one’s perspective.
Are they thinking they are going to work?
Are they trying to “go home” or return to a familiar place?
Are day and night somehow mixed-up for them?
Most often, offering reassurance and validation of your loved one’s point of view can calm their confusion and fears. If you can provide a way for your loved one to feel like they are where they are supposed to be and that they are doing what they think they need to be doing, it may remove part of their reason for wandering.
However, it is a good idea to ensure that access to outside of the home is prevented or monitored.
It is crucial to remember that you must share their journey. You can not convince your loved one that their spouse has passed away and won’t be returning, if they are waiting for them. It is okay to say “I will wait here with you.” Eventually, most can be redirected.
Honesty may be too painful, and ultimately not in their best interest.
Through understanding your loved one’s needs and desires, it is possible for the caregiver to understand some of the issues that cause challenging and frustrating behaviors.
If some of these discussed strategies are utilized, it will contribute to your loved one’s ability to remain at home in a nurturing environment.
As Alzheimer’s disease progresses, the caregiver’s understanding, flexibility and creativity will become invaluable. However, as has been discussed in a previous article, it is essential that caregivers take care of themselves as well.
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