Communicating with Love – Loving Them throughout the Dementia Journey

Communicating with Love – Loving Them throughout the Dementia Journey

As dementia takes its toll, the individual you love may become frustrated with the effects of the disease on their ability to function. They will be aware that they can no longer perform tasks that they could once do with ease. This awareness can lead to frustration, depression, anxiety and anger.  

Understanding their internal environment can go a long way to helping you cope with difficult behaviors. One of the important ways to address these feelings is to focus on building their self-confidence. Increased self-confidence in your loved one can improve their ability to function within a safe environment and reduce the feelings of anxiety and anger.

In this post, I’m going to review seven common behaviour challenges that are typical, along with some ideas to try to deal with those behaviours. Remember that everyone is unique and will respond differently to the challenges they face; however, the challenges themselves are quite common.

Keep in mind that their ability to communicate with you will also change as the disease progresses. They will, at times, be overwhelmed by their emotions and be unable to articulate their needs. Good communication can relieve many of these stressors for you, the individual you care for, and the rest of the family.

  

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. This is often referred to as “background noise” and makes it difficult for the individual to focus and process information. Here are some ways to reduce confusion:

Provide a night light to help the individual to see and locate familiar things. This prevents falls in the dark and protects against wandering.

Use communication techniques rich in reminders, cues, gestures and physical guidance to increase their personal awareness. For example, you could say, “Hi Mom, how are you this beautiful Monday morning?” Your mother would then know it was Monday and that it was morning.

Remember: this 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.

Encourage reminiscences. Gently assist the individual with keeping facts reasonably accurate and related to the past; however, don’t insist on total accuracy. Allow him or her to repeat stories and relive events.

Let them live where they are and just enjoy the moment with them.

Provide each individual with a space to call his or her own. Fill it with familiar things where he or she 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 each person you care for to retain some control over his or her surroundings.

Remember: many of your actions have to be focused on building trust and confidence. Even if they don’t remember details of what you said, they are going to remember how you made them feel.

This was illustrated to me by a friend (let’s call her Katie) who was caring for a woman (let’s call her Anne) in a facility. Katie was new to working with Anne. Katie was told by the staff that she could retrieve a photograph album from Anne’s room. Katie went to get the photograph album but neglected to ask the permission of Anne to do so. When she returned with the album, Anne asked her where she had gotten the album from. Upon learning that Katie had retrieved it from her room, Anne became very angry and refused to have anything to do with Katie for three weeks.

I’m sure that by the next day she did not remember why she was angry with Katie but she did remember that she was angry. Katie had to rebuild her relationship with Anne – which fortunately she did.

 

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.

He or she may also 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 and the piles of papers grow.

 One way to address hoarding or rummaging is to increase activity levels. Increasing activity levels can reduce anxiety and help the mind focus on other things. The Fit Minds Interact® program contains 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.

If the behaviour is not particularly troublesome or unsafe – ignore it. While the hoarding is usually related to anxiety, the disease will make it difficult for him or her 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 him or her 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.

 

Sundowner’s syndrome.

This syndrome is associated with a series of behaviours that typically occur as the sun sets. You may find them reacting with increased anxiety, agitation or outbursts of anger at the end of the day.

Though the cause of sundowner’s is not definitively known, there is research that suggests it may be caused by disruption of circadian rhythms – the way our bodies react to natural light or a lack of exercise.

If you focus on the causes, you can have a big impact on the behavior.

 Set up a structured daily schedule to reduce anxiety about what happens next and reassure the individual that he or she will be taken care of and not abandoned.

Having framing activities before and after specific events can help make transitions easier. 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”.

This reassures the individual that they will be taken care of and really helps reduce anxiety and agitation.

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 provides a good balance of activities that will provide both mental and physical exercise.

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. The television may increase anxious feelings as the programming will be moving too fast for him or her 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. You many also want to use a night light so that the individual is not left in a totally darkened room. While the room in daylight may be familiar, the room in darkness may be unfamiliar to them and increase his or her anxiety and fear.

 

Suspicion, distrust.

A symptom of dementia can be increased suspicion and distrust – including a belief that items are being stolen. Remember: this is not a rational fear so trying to apply logical reasoning to the suspicion will not help it go away.

Begin by building confidence and trust by avoiding 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 often the disease speaking, not necessarily the individual. Even though it may feel like a personal attack on your integrity, it is not.

 

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 and you may also explore other options like nutrition, vitamin levels and appropriate levels of sunlight.

 

Apathy.

Apathy is a common response to dementia. Many people lose their ability to self-motivate. Apathy is often grounded in the fear of failure or embarrassing oneself because of diminished cognitive abilities. Many people withdraw from social or other 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 through reminiscences and encouraging participation in activities and decisions.

Notice pictures and mementos. Ask about them and listen. Create opportunities for them to share their thoughts and feelings with you. The Fit Minds Interact® program has many engaging activities for varying ability levels.

Spend time together. Do not ignore the individual when he or she is quiet and uncomplaining.  Loneliness is a major factor in cognitive decline and can increase the speed of decline.

 

Anger and Aggression.

A cognitively impaired individual may become angry or aggressive when he or she 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. “I understand that you are angry” Reassure him or her 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 him or her 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. Remember: do not offer a hot liquid!

 

These are a few ways to approach challenging behavior in an individual suffering from dementia. This is a difficult journey for both of you.  However, approaching behavior challenges with a calm and caring attitude can go a long way to maintaining and strengthening your relationship.

In the end it is about the relationship – and maintaining the love and care you have for both the individual you are caring for and your family.

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As one of the founders and creative minds behind Fit Minds Inc., Nicole has been creating cognitive stimulation therapy programming since 2010. An experienced curriculum developer, teacher and coach, she brings a wealth of experience to creating and teaching the Fit Minds Program. Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.

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