Written by Shannon Hazen, Director of Professional Services

“This is so out of character for Grandpa, something has to be wrong!”  This is something we hear so often when caring for those with dementia. Our sweet-natured, pleasant loved one is hitting people, spitting out their meds, and making threats. Where is this coming from?  What can we do? It is so important to remember that this is dementia, organically the brain is not able to process requests, and often when asked to perform personal tasks, the feelings of embarrassment, loss of independence, and lack of privacy can bring on a fight in anyone.  The most important thing to remember is approach is everything.

Let me say that again.  APPROACH IS EVERYTHING! When caring for someone with dementia, it is vital to remain calm and collected.  Be nice.  Give direction in step-by-step instruction, one step at a time.  Avoid arguing and try not to take their lack of cooperation personally.  I have often found that when a task like toileting is needed, talking about anything else other than the toileting is helpful.  Learning to speak or ask questions about where they are is good.  When the person is talking about needing their mother, instead of stating, “Your mother passed years ago,” try asking questions about mom.  “What do they do for a living, what is your favorite thing she cooks”, this opens a conversation without the emotional toll of reliving the loss of a loved one and engages them.

The Alzheimer’s Association gives some great tips when managing these problems. Please click here to read them.

There are also factors that should be considered.  Time of day, change of room, change of routine, and infection can all play a role. Pain is also a triggering factor that is not easily diagnosed but can be a huge source of irritability.  By the end of the day, a dementia patient is tired. This is commonly referred to as” sundowning or the sundown effect.”  We can see increased behaviors, irritability, and agitation as the patient has used all their energy just doing day-to-day tasks.  The patient may not be able to verbalize aches and pains.  Let’s face it, most of us have aches and pains as we age.  We can take acetaminophen or ibuprofen and go about our day but imagine if you can’t identify it or communicate the need, your pain, even minor, becomes something that can’t be ignored.  Often, a doctor will prescribe a minor analgesic to help ease the discomfort.  In a study partially funded by the National Institute on Aging, a significant number of patients had undiagnosed pain for years.  If you are interested, here is the link to the article.

Sleep is vital to all of us to help rest the body, restore energy, help mood and depression.  Those with dementia often struggle with normal sleep periods.  By getting a good night’s rest, the patient is reset for the next day and is often more cooperative.  Making an afternoon nap routine is also a good way to combat the “sundown effect.”  There are some medications that are used to help as well.  What is important to know is that some meds for insomnia should only be used in short periods.  Talk with your physician to find the right med.  Caring.com is a wonderful source of tips and information for caregivers of those with dementia.  Please feel free to look into their website.

Identifying the factors that are causing behaviors can be a major win in the ongoing battle.  However, what if the behaviors intensify?  What if there seems to be no rest to the wandering? What if there seems to be no relief?  One of the common symptoms to develop in end of life is terminal delirium.  There are many factors to consider with this type of behavioral change, medications, infections, organic changes to the brain, and the body’s inability to flush out toxins due to aging renal (kidney) and hepatic (liver) functions are some likely causes.  This tends to happen in end-stage disease, a few weeks to a few days before death.  It is unpredictable and is sometimes difficult to identify.  Terminal delirium often is a mixture of hyperactivity such as needing to constantly move, hallucinations, delusions to extreme emotions such as crying or yelling out without reason, and increased somnolence: a feeling of being sleepy and tired but without rest.

Many times, a family member or caregiver will ask me, “what does it feel like,” as terminal delirium appears as if the patient is uncomfortable.  I often describe the natural fight-of-flight response that all human beings have as part of their adrenaline system and response.  Imagine all the toxins that we naturally flush out of our body traveling instead to your brain.  This causes the individual to know something is wrong, but never knowing what is wrong.  The flight in fight or flight is activated, and the person feels as if they must get away.  They don’t know where they are going, but they must get out right now.  This is not the clinical description, but I find it’s the easiest way to explain.

Terminal delirium is difficult to treat, often during this time, a patient needs round-the-clock monitoring due to safety risks and the need to change or adjust medications frequently. The use of anxiety medications is closely monitored as these can sometimes exacerbate the problem.  It is vital that the patient is being seen by a health care provider.   At Generations Hospice, we often are referred during this time as the patient is often uncomfortable and uncontrolled.  It is a stressful time for the patient and their family, and increasing support is vital in finding comfort and peace.

If you have any concerns or questions regarding the care or needs of someone, please give us a call at 712-592-3255.