February 7, 2024

Dementia poses many challenges for both the people struggling with it and for those close to them. It can be hard to witness and cope with common behaviors that arise from illnesses like Alzheimer's, vascular dementia, or frontotemporal dementia. Caring for a person who has dementia may be frustrating, confusing, or upsetting at times. It is new territory both for caregiver, as well as care receiver and this poses many challenges for them both.

As the care receiver's condition worsens, so too does the ability to communicate, act, and think clearly, or to perform many of the day-to-day tasks formerly taken for granted. Dementia encompasses a wide array of diseases, each with their own unique effects on body and mind. Though dementia-related illnesses can differ, their progression usually triggers difficult behaviors that are similar across the spectrum of dementia.  

It would be a mistake to focus on the behavior at the exclusion of the person exhibiting it; today, we have come to understand that "behaviors" are an expression of an unmet need.  It is incumbent upon us all to keep this in mind when faced with the occasions of "difficult behaviors." Therefore, understanding why certain behaviors occur and learning ways to handle a variety of situations can help smooth the path ahead for all involved.

SUNDOWNING: 

(Known as late-day confusion) The name for a group of behaviors, feelings and thoughts that typically get worse around sunset or sundown. These can include memory, thinking, personality, reasoning, behavior, and mood. Agitation and confusion are typical behaviors that accompany Sundowning Syndrome. Excessive pacing and exit seeking, along with delusional thinking and paranoid ideations can also indicate sundowning.

Common contributors to Sundowning can include: overstimulation, mental/physical fatigue, disrupted circadian rhythm cycles, dehydration, pain, low lighting, confusion, thirst, and hunger.

Tips to Manage Sundowning:

1.  Playing calming, preferred music

2.  Naturally lighted environment in the day time

3.  Darkness at maintained, regular bedtime 

4.  Avoid caffeine, limit sugar and non-nutritious foods

5.  Provide familiar favored objects 

6.  Avoid "crowding" ..allow space

7.  Use soft, calming voice

8.  Encourage physical activity throughout the day

AGGRESSION AND ANGER: 

Aggressive behavior is often rooted in mental, physical, and emotional disturbances and can be stressful for both you, and your loved one. While aggression is common, and sometimes can 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.  

Common contributors to anger and aggression are similar to those of sundowning, with the addition of examples such as thwarting an attempted redirection from potentially dangerous behaviors, such as handling unsafe objects, or wandering into a restricted space. 

Tips to Manage Anger and Aggression:

1.  Allow the aggression to run its course. Make sure both you and your loved one are safe, and in no physical danger, then allow your loved one to work through their anger with plenty of space.

2.  Neither attempt to "reason" with the strong emotions nor defend or argue; avoid posing any resistance and instead, provide a safe space for the negative emotions to dissipate.  

3. Aggressive episodes are common in dementia illnesses; remember that you are not the cause of the anger; avoid taking it personally

4.  As anger begins to dissipate, distract your loved one with an offer of a snack, or other enjoyable activity.

5.  Do not refer to, or recount the episode; provide a "clean slate" and move forward.

WANDERING: 

Wandering, when your loved one with dementia leaves your home or place of care without your noticing it can result in extremely unsafe situations. By understanding why wandering occurs you can better prepare yourself, and all entrusted to their care, should your loved one ever wander or get lost. (Please note: Be certain that your loved one has a laminated card with his/her name, address, phone number, and name of caregiver attached to clothing or billfold at all times.)

Common causes of wandering can include: Stress that can result in disorientation and fear, triggering the need to leave the environment or situation altogether. Mistakenly engaging in old routines, such as leaving the house to go to work, or attempting to visit a market in an old, faraway neighborhood. Pain and discomfort when there is little physical exercise engaged in. General disorientation leading to searching for locations related to normal activities, like the bathroom or the kitchen. Looking for a long lost pet.

Tips to Manage Wandering:

1.  Remove noise-heavy and turbulent home environments to help instill a feeling of calm and security.

2.  Engage your loved one in physical activity to help expend excess energy, reduce restlessness, and promote restful sleep.

3.  If your loved one begins pacing and appears distressed, offer reassurance that they are secure and all is well.

4.  Explore pain options, wandering may be rooted in trying to escape pain and discomfort.

5.  Offer a distraction, such as a snack, help with a project, or game or other enjoyable activity 

6.  Check all exits for safety alarms or bells to notify you that the door is being opened

7.  Safety-proof kitchen area and other places in the home that might house sharp objects and place them out of reach

REPETITIVE ACTIONS: 

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 might include: confusion when performing a task, short term memory loss, stress and anxiety brought about by fear, loss of self assurance, confusion evidencing as paranoia.

Tips to Manage Repetitive Actions

1.  Adopt a calm, patient, and reassuring demeanor while addressing the behavior, (DO NOT address the repetition, or say "I already told you!") use soothing, affirmative responses to address the anxiety

2.  Engage your loved one to assess the underlying cause of the behavior, such as a toileting issue, thirst, hunger, pain, change in routine, anxiety at an upcoming event

3.  Redirect attention based on changing the subject or work to focus on the observed underlying cause

4.  Initiate an activity that helps "change the subject" such as a walk, or seeking help with a chore

5.  Provide responses on post-its that address and reassure the repetitive focus 

6.  When feeling overwhelmed by your loved one's repetitive questions, give yourself a time-out of a few moments and take a few deep breaths 

HIDING, HOARDING, and RUMMAGING THROUGH ITEMS: 

Collecting, hiding, and rummaging items can be indications of anxiety and a need to feel secure and in control. These behaviors are rooted in confusion and wanting to feel in charge of their lives. Additionally, there is often a sense of loss, or fear of loss, that motivates the need to hide and control possessions. The items your loved one collects and hoards seemingly provide a sense of comfort and security. Collecting items and storing them away indicates a fear of needing them some day, or fear of being robbed. Additionally, as the ability to recall information decreases 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. The inability to distinguish trash and used personal items and perishable food stuffs from useful items increases as cognitive function declines. Unsafe items such as scissors, razors, or knives, along with breakable objects can pose a safety threat, as well.

Tips to Manage Hiding, Hoarding, and Rummaging:

1.  Refrain from removing all of the safe items from your loved one's collection, as it can severely upset their sense of security. Practice negotiation, ie: trading old, dirty socks for new ones, fresh banana slices for old peels, clean, new clothes items for tattered ones.

2.  Regularly check collection for unsafe items, such as forks and knives, scissors, razors and remove immediately, without reprimand. Assure them that you will store them for safety and, again, trade for something safe that would be of value to them.

3.  Offer a charitable reason for an item's removal such as a donation to a children's charity, or a dog rescue organization.  

4.  Enlist your loved one in helping with the storing of an overload of items in packing boxes for "safekeeping" 

5.  Negotiation and respect are key. Give your loved one an old key, billfold, or remote no longer in use, old mail in return for current mail or items.

"Behaviors" are the manifestation of unmet needs. Taking the time to determine that need while being willing to fill it enables our loved ones to retain their dignity, comfort, and right-to-be.  

Karen Kelleher MA

DayBreak Family Caregiver Support Coordinator

Together, we can make a meaningful difference in the lives of

elders and family caregivers who selflessly support them.

DayBreak is committed to empowering elders and supporting caregivers. If you know an elder in need of our care and coordination services, or a family caregiver seeking assistance, encourage them to reach out to us at:

510-834-8314