When providing care for a loved one with dementia, there are many challenges you face as a caregiver. As your loved one’s condition worsens, so too does the ability to communicate, act and think clearly, and perform many of the common day-to-day tasks that we take for granted.
... the anger and frustration you may feel as a dementia caregiver is normal and does not make you a bad person.
Throughout this mental and physical decline, your loved one may begin to display difficult and sometimes dangerous behaviors that can put their safety, and sometimes the safety of others, at risk. By understanding the root causes behind the behaviors, what may trigger them, and how to best manage these behaviors when they arise, you can better care for your loved one and yourself.
What is Dementia?
Dementia is the umbrella term that is used to describe a vast array of diseases that cause severe degradation of a person’s memory and ability to clearly think and correctly function. A dementia diagnosis requires that a person have at least one of the following cognitive disturbances:
The inability to carry out physical motions and normal sensory functions even though physical ability and motor functions are not impaired, and the inability to comprehend how to go about completing a task and idea of the task itself.
Those diagnosed with dementia have severely confused thinking and greatly reduced environmental awareness. Those suffering from delirium often don’t know where they are, why they are there, or how they arrived at where they are.
Inability to Executively Function
Dementia patients are not able to clearly think through a plan or grasp an abstract concept. The ability to devise, act upon, monitor, or stop a set of complex actions or ideas is lost.
As dementia progresses, dementia patients experience a decline in their ability to verbally communicate and convey ideas.
Agnosia is the inability to recognize familiar objects, even though normal sensory functions are intact. Identifying objects like an apple or the television remote becomes difficult for a loved one with dementia.
Mild Cognitive Impairment
Mild cognitive impairments are difficulties concerning memory and overall decline in general cognitive function. These are often the first signs that present themselves prior to an official dementia diagnosis.
Common Difficult Dementia Behaviors and How To Manage Them
Dementia encompasses a wide array of diseases, each with their own unique effects on the body and mind. Though dementia-related illnesses can differ, their progression usually triggers difficult behaviors that are similar across the spectrum of dementia illnesses.
Dementia, as a disease of the brain, can greatly disrupt your loved one’s normal sleep cycle. This difficulty often presents itself in the form of “sundowning:” a heightened sense of restlessness, confusion, and anxiety as night approaches.
Common Causes of Sundowning
Sundowning can have a severely negative impact on your and your loved one’s sleep schedule. Sleep deficiency can degrade your ability to provide care and further exacerbate your loved one’s discomfort.
Overstimulation, especially before bed, can produce sundowning symptoms at bedtime.
A fear of the dark may resurface in dementia patients, due to confusion and anxiety concerning the unknown.
Too many stimulants from your loved one's diet, including too much caffeine, sugar, or other food-based stimulants, can cause an increase in sundowning behavior.
How to Manage Sundowning
Learning to effectively combat sundowning is key in ensuring both you and your loved one receive plenty of rest and are able to comfortably function throughout the day.
Monitor your loved one’s diet
While, in most end-of-life care settings, patients are allowed to eat what they wish so long as it causes no unnecessary worsening of pain or symptoms, loved ones with dementia may be required to limit their intake of sugar, non-nutritious foods, and caffeine to ensure a restful sleep.
Set up a sleep schedule
Keeping bedtime at a set time allows your loved one to mentally wind down. Coupling a set bedtime with a before-bedtime routine can be doubly effective, as the ritual of preparing for rest helps calm and relax your loved one.
Encourage physical activity throughout the day
Expending energy throughout the day helps the body wind down when bedtime approaches. Consult your loved one’s doctor prior to an increase in physical activity.
Keep a commode near the bed
Your loved one may have difficulty finding the bathroom or remembering where it is. Keeping a commode near the bed allows them to quickly use the restroom and limits the possibility of confusion and accidents in the middle of the night.
Aggression and Anger
More than 30% of dementia suffers have experienced a reported flare of aggression and anger towards loved ones. Aggressive behavior is a stressful experience for both you, as the caregiver, and your loved one, and is often rooted in mental, physical, and emotional disturbances.
Common Causes of Aggression and Anger
While aggression is common, and can sometimes be severe, understanding its causes and knowing that it is a natural part of the disease’s progression can better prepare you for an outburst of anger from your loved one.
Frustration at the inability to complete everyday tasks.
Pain or physical discomfort, resulting from a wound, hunger, or pain caused by a disease accompanying the dementia illness.
Lack of trust in a caregiver or member of the family can cause an upsurge in aggression.
Overstimulation of the senses from loud televisions, rooms that are too bright, or temperatures that are too hot or cold can give way to increased aggression.
Confusion or unfamiliarity with a person or place can lead to an outpouring of aggressive speech or behavior in response.
How to Manage Aggression and Anger
While you can take preventative measures as a caregiver, aggressive outbursts can become a common occurrence. Knowing how to manage these outbursts and help your loved one return to emotional equilibrium can greatly reduce the severity and duration of the aggressive episode.
Allow the aggression to run its course
First, make sure both you and your loved one are safe, and are not in any physical danger, then simply allow your loved one to work through their anger with plenty of personal space.
Remember that aggression is a natural part of the disease
Regardless of the severity your loved one’s outburst, remember that you are not the cause of the anger. Aggressive episodes are common in dementia illnesses. Do not take the anger personally.
Distract your loved one
Focusing on an enjoyable activity or topic of discussion moves focus away from the anger and on to something that is a source of joy.
Refrain from physical contact
Touching, hugging, or physically comforting your loved one may be an almost automatic response under normal circumstances, but often, physical contact only exacerbates the outburst.
Wandering, when your loved one with dementia leaves your home or place of care without your noticing, and sometimes through dangerous means, can result in extremely unsafe situations.
Common Causes of Wandering
By understanding why wandering occurs within Alzheimer’s sufferers, you can better prepare yourself and your family should your loved one ever wander or get lost.
Stressful or overstimulating environments
Stress can result in disorientation and fear in your loved one, triggering the need to leave the environment or situation altogether.
Mistakenly engaging in old routines
As dementia progresses, it can become increasingly difficult for your loved one to remember major environmental and life changes, such as their retirement, or having moved to a new city. Your loved one may leave the house to head to work at a job they have long since retired from or try to visit a market that has been closed for years.
Pain and discomfort
When in pain, your loved one might seek to walk and move about to relieve it, unfortunately becoming lost in the process.
Lack of stimulating physical activity
If boredom sets in, your loved one may seek activity outside of the home. This can be especially the case when there is little to no physical exercise enjoyed by your loved one.
Basic daily needs
Your loved one may wander off and become lost or disoriented when searching for locations related to normal, daily activities, like the bathroom or kitchen.
How to Manage and Prevent Wandering
Having a plan in place and knowing what steps you can take to prevent wandering can help keep your loved one safe, even when you can’t be there to provide direct supervision and care.
Reduce noise levels in the home
Loud televisions, noisy computers, and otherwise noise-heavy and turbulent home environments can elevate your loved one’s anxiety and stress levels. Removing these noises from your home or your loved one’s living environment can help instill a feeling of calm and security.
Promote physical activity
If your loved one is able to engage in physical activity, performing exercise throughout the day can help expend excess energy, reduce restlessness, and promote restful sleep.
If your loved one appears distressed and begins pacing, often a behavior that leads to wandering, offer reassurance that they are secure and all is well.
Put away items
Items that your loved one would commonly take with them when preparing to leave the house — like purses, keys, wallets, and jewelry — can be put away to help prevent wandering.
Explore pain treatment options
Your loved one’s wandering may be rooted in their trying to escape pain and discomfort. Talk to your loved one’s physician to better understand and employ pain relief measures to help your loved one feel more comfortable throughout the day.
Repeating an activity, question, or sentence again and again is a common occurrence for those with dementia. Often rooted in anxiousness and needing to feel comfort, repetition can be particularly taxing on caregivers.
Common Causes of Repetitive Actions
While repetition can be an exhausting and frustrating behavior, understanding the root of the behaviors gives you better insight as to how you can help without overburdening yourself.
As mental facilities decline throughout the dementia’s progression, your loved one may become more easily confused when performing a task or engaging in conversation, making it difficult to remember whether or not they have completed a task or had a question answered.
Stress and Anxiety
Your loved one’s repetition may also be rooted in a fear or concern. The stress and anxiety brought about by this fear, coupled with the declining ability to form and ask questions and remember the answers, can lead to repetitive actions or questions. In these episodes of repetition, your loved one needs assurance and comfort most of all.
Managing and Responding to Repetitive Actions
Repetition can be an extremely frustrating dementia-related behavior to deal with as a caregiver; however, by focusing on the emotional stimuli that’s driving the action in your loved one, you can better guard against caregiver burnout.
Hallucinations, the false sensory experience of an event or entity that does not exist, most commonly occur during the later stages of dementia-related illnesses. Hallucinations often begin manifestation as auditory hallucinations, but can be present within each of your loved one’s senses, wherein they taste, smell, feel, see, and hear things that aren’t real.
Common Causes of Hallucinations
While hallucinations can manifest from ailments and symptoms unrelated to dementia, such as dehydration, infection, or adverse reaction to medication, the brain’s gradual decline is the root of most hallucinations.
Degradation of memory and senses
As your loved one’s dementia progresses, their ability to correctly process sensations, interpret them, and correctly recall appropriate responses from memory becomes severely impaired.
Loud, violent, depressive, or suspenseful television program and movies can instill feelings of paranoia, suspicion, and danger within a loved one suffering from dementia.
Managing and Responding to Hallucinations
Hallucinations can be a particularly debilitating behavior and can create high levels of stress for dementia sufferers and caregivers alike. Taking preventative steps to better manage hallucinations and knowing how to respond correctly can help quickly diffuse the episode and restore calm.
Contact your loved one’s physician
If your loved one begins to show signs of experiencing hallucinations, talk to your loved one’s physician immediately. The physician can help you understand why your loved one’s hallucinations are occurring and whether or not the hallucinations are linked to the progression of the dementia.
Create a tranquil surrounding
Reduce the room’s light, remove excess noise sources where possible, maintain a comfortable room temperature, and ensure that your loved one’s space is clear from any potential obstacles or tripping hazards.
Let your loved one know that you are here, the room is safe, and that they are secure and loved.
Redirect your loved one’s attention
Directing your loved one’s energy and attention to a favorite song, memory, or game can help shift attention away from the feelings of paranoia or hallucination and bring them to a calm, relaxed state.
Hiding, Hoarding, and Rummaging Through Items
Your loved one, over time, may begin the practice of collecting, hiding, and hoarding items. Hiding items is normally a harmless behavior; however, more advanced cases can pose serious health risks.
Common Causes of Hiding, Hoarding, and Rummaging
Hiding items can be a very confusing behavior to encounter; however, the causes of this behavior are rooted in confusion and often communicate the need for security, novelty, and control.
Inability to distinguish trash from other items
As cognitive functions decline, the ability to distinguish useful items from trash becomes compromised, leading dementia suffers to believe that items of garbage are useful and valuable.
Need for security
Collecting items and storing them away indicates that your loved one feels insecure and has begun collecting these items out of fear of needing them some day or out of fear of being robbed.
Your loved one may be collecting and hiding items in an attempt to cure boredom and a general lack of stimulating activity.
Inability to recall placement of items
Your loved one’s hiding of items may also be involuntary. As the ability to recall information degrades as a result of dementia, your loved one may not be able to recall where they placed keys, wallets, remote controls, or other items since they last used them.
Managing and Responding to Hiding, Hoarding, and Rummaging
The items your loved ones collects and hoards, at some level, provide a sense of comfort and security. By understanding their bond to the items and what the items represent, you can better manage incidents of potentially harmful hiding and hoarding.
Only address and remove items that are potentially harmful
Your loved one may a dangerous or health-hazardous item. When this occurs, don’t remove or de-clutter all of the items from your loved one’s collection, as it can severely upset their sense of security. Remove items from your loved one’s collection only if they are dangerous to your loved one or others.
Negotiate the removal of harmful items
Your loved one has likely formed some type of emotional attachment to each item in their collection, making it difficult to remove. Offer your loved one a trade — fresh banana slices for the old peels, new socks for the tattered, worn out socks — when looking to remove items.
Offer your loved one a charitable reason for the item’s removal
Letting your loved one know that their item may be going to a church, charitable organization, or a family in need can make them much more willing to part with the item.
Patience, Love, and Understanding as a Dementia Caregiver
Dementia-related illnesses bring unique end-of-life care challenges and the challenges facing a dementia caregiver only grow more difficult as the disease progresses. It is important to remember that the anger and frustration you may feel as a dementia caregiver is normal and does not make you a bad person. Taking breaks from the caregiving role is vital to your health and your ability to care for your loved one.
The path of a dementia caregiver is one of numerous challenges and obstacles, but by understanding the root of your loved one’s difficult behaviors, and by keeping patience and love at the forefront of your emotional arsenal, you can provide your loved one with the care and support needed on the end-of-life journey.
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