Difficult behavior associated with dementia is a common frustration for caregivers. As dementia increases frustration in the person you love, they can behave in unexpected or difficult ways.

 

There are seven common behavior challenges that most caregivers face at one time or another. Difficult behavior is usually the tipping point for most caregivers, therefore, we will cover some ideas on how to deal with it.

 

 

Addressing Difficult Behavior

The underlying approach in dealing with difficult behavior is to address their feelings of anxiety, anger and frustration. Focusing on building their self-confidence and creating a relationship of trust is important. While each individual is unique and will respond differently, the behavior challenges are common.

1. Confusion.

One of the most common problems associated with dementia is confusion. As the disease progresses, the brain’s ability to transmit information is compromised.  You may have heard this referred to as “background noise”. This ‘noise’ makes it difficult for the individual to focus and process information.

Some ways to reduce confusion are:

• Use communication techniques rich in reminders, cues, and gestures to increase their personal awareness. For example, you could say, “Hi Mom, how are you this beautiful Monday morning?” Your mother would know that you were related, it was Monday and that it was morning. Keep in mind it is not a contest to see how much they can remember on their own. The more cues you can give them, the more confidence they will have in operating in their environment.
• Gently assist the individual with keeping facts reasonably accurate and related to the past; however, don’t insist on total accuracy. Allow them to repeat stories and relive events. Let them live where they are in time and just enjoy the moment with them.
• Provide each individual with a space to call their own. Fill it with familiar things where they can rest and feel safe and secure.
• Ask permission if something must be moved or changed. This helps you to establish feelings of trust and allows them to retain some control over their surroundings.

 

2.  Hoarding or rummaging behaviour.

Insecurity or anxiety about the future can cause your loved one to hoard items that give them comfort or are connected with particular memories. Alternatively, they may be having difficulty with sequential events. So what looks like hoarding may actually be an inability to follow through on tasks. For example: paying bills becomes too difficult to complete so the piles of papers grow.

Some ways to deal with hoarding are:

• Increase their activity levels. Increasing activity levels can reduce anxiety and help the mind focus on other things. The Fit Minds programs contain many options that can be used to provide alternative activities to hoarding. Working on sequencing activities as well may make it easier for the individual to complete some tasks.
• Ignore their hoarding, particularly if the behavior is not troublesome or unsafe, While the hoarding is usually related to anxiety, the disease will make it difficult for them to articulate their concerns in a rational way.
• You can also learn their hiding places and occasionally clean out their collection, leaving a few items behind. They will likely not notice and this allows you to control the clutter.
• Finally, provide a box or private space for them to keep things in. You can decorate it together and label it with their name. Keep the box in the same place so they can easily locate it.

 

3.  Sundowner’s syndrome.

Sundowner’s syndrome occurs as the sun sets. Increased anxiety, agitation or outbursts of anger occur at the end of the day. Though the cause is not definitively known, research suggests it may be a disruption of circadian rhythms – the way our bodies react to natural light. Other research suggests it is caused by a lack of exercise.

If you focus on the causes, you can have a big impact on the behavior. Some ideas are:

• Set up a structured daily schedule to reduce anxiety about what happens next. Reassure the individual that they will be taken care of and not abandoned.
• Having framing activities before and after specific events. Framing can help make transitions easier, reducing anxiety and agitation. For example: every time you are preparing for supper you may sit them in a certain chair and say the same words: “I’m going to get supper ready. I will be back to get you in 15 minutes”.
• Ensure that there is sufficient activity during the day so that they are pleasantly tired by day’s end. Include both physical activity and mental stimulation. The Fit Minds program is a good resource for mental activities.
• Alternate activity with programmed rest and reduce all stimuli during rest periods. For instance: a rest period in the living room after lunch should not include the TV. Instead play some light classical music.
• Reduce time spent watching television. Television increases anxious feelings when the programming moves too fast for them to comprehend or process.
• Indoor areas should be well-lit as daylight fades. So close the curtains and turn on the lights as the sun sets. While the room in daylight may be familiar, the room in darkness may be unfamiliar to them and increase their anxiety and fear.

 

4.  Suspicion, distrust.

Increased suspicion and distrust can occur with dementia, including a belief that items are being stolen. This is not a rational fear, so trying to apply logical reasoning to the suspicion will not help it go away. This can be one of the most difficult behaviors to manage.

Begin by:

• Building confidence and trust.  Avoid grand gestures and promises that cannot be carried out.
• If an item is missing, offer to look for it with them. Do not argue about or try to rationally explain disappearances of their possessions.
• Understand that accusations and suspicion are the disease speaking, not necessarily the individual. Even though it may feel like a personal attack on your integrity, it is not.

 

5.  Depression.

Depression is often associated with dementia, either as a precursor or as a symptom. Depression should not go untreated. Alert your family doctor so that they may address this issue. Medications may help them.

Other options to explore are:

• Music can have a positive effect on lifting depression. Humor can also be effective. Get some funny movies and watch them together.
• Nutrition and in particular vitamin levels can play an important role in alleviating depression. Have your family doctor check their vitamin and mineral levels. [Read more on the BEN scale]
• Ensure appropriate levels of sunlight or get Vitamin D thru a supplement.

 

6.  Apathy.

Apathy is a common response to dementia. Many people lose their ability to self-motivate. Fear of failure can lead to apathy. We all avoid putting ourselves in potentially embarrassing positions. So, it shouldn’t be surprising that individuals challenged by dementia withdraw from social activities that they used to enjoy. It can be frustrating for caregivers, because all enthusiasm seems to have disappeared.

 Dementia is a huge blow to an individual’s self-confidence. Focus on interactions and activities that rebuild self-esteem.

Some ways to do this are:

• Encouraging participation in activities and decisions.Ask their opinion and make them part of decision-making.
• Notice pictures and mementos. Ask about them and listen to their answers.
• Create opportunities for them to share their thoughts and feelings with you.
• Spend time together. Do not ignore the individual when they are quiet and uncomplaining.  Loneliness is a major factor in cognitive decline and can increase the speed of decline.

 

7.  Anger and Aggression.

Anger or aggression is common when an individual is frustrated or in pain. Try and determine what is actually causing the emotions. Do not take it personally, as it is very likely that you are just a convenient target.

• If possible, validate the individual’s feelings. Say  “I understand that you are angry” Reassure them that they are alright, and that you understand that they can’t help themselves.
• Do not react to insults and verbal abuse. Speak in a well-modulated voice. This can help to reduce the agitation. If you respond with anger, the situation will quickly escalate.
• Take a deep breath and sit or stand a little to the side – about four to five feet away rather than facing them directly. This allows you to appear less intimidating and can lower the level of anger.
• Finally, offer food or a drink. It is difficult to eat and be angry at the same time. But do not offer a hot liquid!

 

Build Confidence and Trust

Difficult behavior is overcome by building confidence and trust with them. Emotional memory remains very strong. So even if they don’t remember details of what you said, they are going to remember how you made them feel.

Margaret’s story illustrates this point. A new care worker wanted to engage with Margaret. Another staff member told her that Margaret had a favorite photograph album. So she got it but did not ask Margaret’s permission. With the best of intentions, the care worker got the album. Margaret asked her where she had gotten the album from. When she learned it had been retrieved from her room, Margaret was very angry and refused to have anything to do with her for three weeks.

I’m sure that by the next day she did not remember why she was angry with the new care worker but she did remember that she was angry. This individual had to rebuild her relationship with Margaret – which fortunately she did.

The dementia journey is a difficult journey.  However, approaching difficult behavior with a calm and caring attitude can go a long way to maintaining and strengthening your relationship.

In the end it is about your relationship – and maintaining your love and caring is your legacy.