Other tips for handling emotional distress

Opleidingscursus Behavior challenges of people with dementia and how to cope with it Other tips for handling emotional distress

As shown above for individuals with dementia, it is common to experience emotional distress. It is not possible to control the emotions of the care person, but we can control our own reactions to them.

Reassurance. Start by making your presence known. A simple touch can calm an upset person. However physical contact may also trigger emotions for someone who is already agitated. Try saying something like: “I’m here, I will help you.”
Respond to emotional content. Recognize and respect feelings, regardless whether the person with dementia is reacting to something serious or trivial.
Refocus attention. Rather than allowing the care person to dwell on a subject that is difficult or painful, try to redirect the conversation.
Use positive physical approach. Make sure to approach from the front, approaching from behind can produce anxiety for the individual with dementia. Learn more about a positive physical approach:

https://www.dementiacarecentral.com/video/video-approach/

Try to determine the reason behind distress. Awareness of what causes distress can help remedy the issue and avoid in the future.
Show empathy. Reacting negatively makes the situation worse.

Persons with dementia may gradually lose their so-called “ internal critics ” that tell them what is appropriate. Some care persons will use curse words or seek out alcohol more frequently as the disease progresses. Obscenities are typically taboo, but can sometimes be our most basic forms of expression.

Similarly, people with some forms of dementia may no longer recognize what is considered socially or sexually appropriate.

In later stages of dementia, many people behave in an agitated, aggressive manner. These behaviors occur during showering/bathing, in response to overstimulation in the environment, physical discomfort, changes in routine and frustration with not being able to communicate or accomplish a task. Sometimes medications may be helpful.

When the person with dementia does not act the way we want or are used to, it can be frustrating, upsetting, and confusing . Do not blame or punish the person, as this will make the situation worse. Rather , take a few moments to understand where this behavior is coming from, then use effective strategies to cope.

Also remember that our behavior has profound impact. Check your body language, facial expression, tone of voice and mannerism. Make sure they are in line with the message you hope to communicate.

Refusing help

Persons with dementia may refuse help or only accept help from a specific individual. Possible causes include mistrust and confusion.

Sometimes it is simply a matter of how a person is approached. Use the positive physical approach that is mentioned before.

If the person with dementia is being uncooperative in order to gain a sense of independence or control, come up with a task. For example: “How about you start combing your hair while I finish tying these shoes?”

Repetition

People with dementia may repetitively say or do something. They may repeat a word or question, or pace back and forth. This behavior could be due to anxiety or feeling frightened, and the repetition creates a sense of familiarity and security. It could also be the result of only remembering certain things or forgetting what was previously said.

Allow the person to participate in repetitive activities that seem to give comfort without causing harm. If they cause harm, try redirecting one’s attention to a harmless or useful activity.

Hoarding

Some people with dementia hoard food or other items, creating their own private collection or supply. This is usually harmless, and makes the individual feel safe and in control. Persons with dementia may hide things in places where they kept things earlier in life, such as underneath mattresses, in dresser drawers, or inside jars.

Rather than confronting and correcting the individual, try adapting. Intervene only if the behavior is destructive or excessive. Check one’s usual “hiding” places, and check the trash or dirty laundry.

Sleep disturbances/sleeplessness

Persons with dementia may have trouble sleeping, or they may sleep for long hours during the day and stay up all night. This sleeplessness issue may be due to changes in the brain caused by dementia, as well as changes in behavior and routine.

Use natural or artificial lighting to help when it is daytime and when it is night time (and therefore, time to sleep) It can be helpful to use curtains to block light. We may also want to prevent the person from taking too many naps during the day, and stimulate them to go to bed and get up each day at the same time. Avoid giving the care person caffeine, especially after lunchtime. Consider Cannabiddiol ( CBD) which has been known to help with sleeplessness. Simple exercise or activity during the day also can contribute to better sleeping at night. Plan for a calmer, quieter, but structured time in the late afternoon and evening, such as a peaceful walk.

Sun downing

“Sun downing” as already mentioned refers to an increase in confusion, agitation, disorientation, and anxiety that begins around dusk and continues into the night. These episodes may be due to tiredness at the end of the day and confusion due to problems with the biological clock, which is a bodily sense of the time of day.

Close curtains before it gets dark, and turn on indoor lights. Handle abnormal behaviors and sleeplessness as described above.

Swearing

Sometimes people with dementia will swear or “curse”. This holds true even if the individual never or rarely cursed before the disease, or only did so “behind closed doors”. It can be troubling for relatives and caregivers when you hear a person start to curse more often, but there are some simple explanations, which mainly stem from a lack of impulse control.

Remain calm and remind yourself the individual is not purposefully behaving this way. Redirecting the person’s attention, such as changing conversation or turning on a liked television show, may distract from swearing.

https://www.dementiacarecentral.com/video/swearing/

Wandering

People with dementia may wander due to boredom, to relieve anxiety, because they have thirst or hunger, or simply out of confusion. They may also feel a need to “look” for someone or something or think they need to be somewhere.

Suggestions: Keep an eye on the care person. Lock doors, and invest in identification bracelets and/or tracking devices. If possible try technological solutions to create more possibilities to move around.

Incontinence

Incontinence often becomes problematic in the later stages of a person’s dementia. This might be the result of a decrease in bladder and bowel control, wearing clothing that is difficult to take off, drinking too much coffee or tea, forgetting to use the bathroom, or simply not remember where the bathroom is or how to use it.

The signage to the bathroom has to be clear. Schedule regular bathroom breaks and have the individual wear clothes that are easily removable.

Aggressive behavior

A person with dementia may react verbally or physically aggressive. Examples include threatening another person, screaming, pinching, pulling hair, and biting. When inflicted with dementia , an individual may not know how to communicate what it is he/she needs and behaving aggressively might be his/her way to communicate what is needed in order to get it. The person may be in pain, be upset, confused, anxious, or the aggressive behavior may be a general defensive mechanism.

If you are upset by the behavior, avoid shouting and give yourself time to calm down before responding. Provide reassurance and acknowledge the way the persons is feeling. Give them a say in the situation, but also show limits, certainly when the aggressive behavior affects other persons.

To answer the question “how to cope with unexpected behavior from persons with dementia in relation with our own values?” you can conclude that this is a complex question.

There is always interaction between the person with dementia and the caregiver. Remember you cannot always control the behaviour of the care recipient, but you can control your own reactions to them. Be aware of the influence of your own behavior towards the person with dementia.

The values of the Dutch code of conduct are leading to build up a professional attitude. In combination with somebody’s own values and knowledge the caregiver have to try to treat people with respect and compassion.

It is necessary to have knowledge about different types of dementia and of the background of the person who needs your care. To know the life story and the habits of the individual, makes it possible to reduce and manage unexpected behavior.

Behavior	Symptoms	Reaction caregiver
Anger and frustration	feeling frightened, frustrated, embarrassed or humiliated	breaking down complex tasks into smaller manageable steps to avoid overwhelming or frustration. Give the care recipients the chance to make their own decisions. Structure the day with planned interactions
Depression	The feeling of social isolation and loss of control that comes with the progression of dementia may contribute to depression and loneliness. It can be difficult to distinguish depression from dementia because some of the symptoms are the same, like apathy, memory loss, or trouble with sleeping (insomnia).	talk to a doctor to determine if medical treatment or counseling is warranted. Caregivers should also try to make a bigger effort to keep the individual active and socially involved.
Anxiety and clinging	Some people respond to anxiety by pacing, experiencing insomnia, or restlessness; others may choose to cling to familiar objects or individuals.	Structure the daily activities in small parts Keep eye contact, only touching people when it is necessary or they are respond good on it
Mood swings	Sometimes people with dementia have mood swings because they are frustrated by a loss of abilities. Sometimes they are just scared, confused, or tired. Mood swings may also occur because an person has pain, is too hot or cold, is hungry or is bored. Other possible explanations include untreated psychiatric disorders, diet, caffeine, feeling rushed, clutter, noise and general “overstimulation”. Dementia may lower a person’s inhibitions or “filter” when it comes to expressing emotions, resulting in an increase in crying or angry outbursts.	Try to accept that mood swings are caused by dementia and are not the individual purposely acting out. To lessen the severity of mood swings and make occurrences less frequent, knowing the persons like’s and dislike’s is key, i.e. knowing what calms the person down, what upsets him/her, times of the day the individual is more likely to act out, favorite music and activities, etc. This allows the caregiver to predict when mood problems might occur, do your best to avoid them, and if they occur, know what might soothe the individual. Minimize distractions and noises, and be very patient.
Refusing help	Possible causes include mistrust and confusion. Sometimes it is simply a matter of how a person is approached.	Use the positive physical approach that is mentioned before. If the person with dementia is being uncooperative in order to gain a sense of independence or control, come up with a task. For example: “How about you start combing your hair while I finish tying these shoes?”
Repetition	People with dementia may repetitively say or do something. They may repeat a word or question, or pace back and forth. This behavior could be due to anxiety or feeling frightened, and the repetition creates a sense of familiarity and security. It could also be the result of only remembering certain things or forgetting what was previously said	Allow the person to participate in repetitive activities that seem to give comfort without causing.
Hoarding	Some people with dementia hoard food or other items, creating their own private collection or supply. This is usually harmless, and makes the individual feel safe and in control. Persons with dementia may hide things in places where they kept things earlier in life, such as underneath mattresses, in dresser drawers, or inside jars.	Rather than confronting and correcting the individual, try adapting. Intervene only if the behavior is destructive or excessive. Check one’s usual “hiding” places, and check the trash or dirty laundry.
Sleep disturbances/sleeplessness	Persons with dementia may have trouble sleeping, or they may sleep for long hours during the day and stay up all night. This sleeplessness issue may be due to changes in the brain caused by dementia, as well as changes in behavior and routine.	Use natural or artificial lighting to help when it is daytime and when it is night time (and therefore, time to sleep) It can be helpful to use curtains to block light. We may also want to prevent the person from taking too many naps during the day, and stimulate them to go to bed and get up each day at the same time. Avoid giving the care person caffeine, especially after lunchtime. Consider Cannabiddiol ( CBD) which has been known to help with sleeplessness. Simple exercise or activity during the day also can contribute to better sleeping at night. Plan for a calmer, quieter, but structured time in the late afternoon and evening, such as a peaceful walk.
Sun downing	Sun downing refers to an increase in confusion, agitation, disorientation, and anxiety that begins around dusk and continues into the night. These episodes may be due to tiredness at the end of the day and confusion due to problems with the biological clock, which is a bodily sense of the time of day.	Close curtains before it gets dark, and turn on indoor lights.
Swearing	Sometimes people with dementia will swear or “curse”. This holds true even if the individual never or rarely cursed before the disease, or only did so “behind closed doors”. It can be troubling for relatives and caregivers when you hear a person start to curse more often, but there are some simple explanations, which mainly stem from a lack of impulse control.	Remain calm and remind yourself the individual is not purposefully behaving this way. Redirecting the person’s attention, such as changing conversation or turning on a liked television show, may distract from swearing.
Wandering	People with dementia may wander due to boredom, to relieve anxiety, because they have thirst or hunger, or simply out of confusion. They may also feel a need to “look” for someone or something or think they need to be somewhere.	Keep an eye on the care person. Lock doors, and invest in identification bracelets and/or tracking devices. If possible try technological solutions to create more possibilities to move around.
Incontinence	Incontinence often becomes problematic in the later stages of a person’s dementia. This might be the result of a decrease in bladder and bowel control, wearing clothing that is difficult to take off, drinking too much coffee or tea, forgetting to use the bathroom, or simply not remember where the bathroom is or how to use it.	The signage to the bathroom has to be clear. Schedule regular bathroom breaks and have the individual wear clothes that are easily removable.
Aggressive behavior	A person with dementia may react verbally or physically aggressive. Examples include threatening another person, screaming, pinching, pulling hair, and biting. When inflicted with dementia , an individual may not know how to communicate what it is he/she needs and behaving aggressively might be his/her way to communicate what is needed in order to get it. The person may be in pain, be upset, confused, anxious, or the aggressive behaviour may be a general defensive mechanism.	If you are upset by the behaviour, avoid shouting and give yourself time to calm down before responding. Provide reassurance and acknowledge the way the persons is feeling. Give them a say in the situation, but also show limits, certainly when the aggressive behaviour affects other persons.

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