Living well - Quality of life - Understanding personal expressions and managing distress

We have all experienced a reaction to something that caused us distress and resulted in agitation and anger. In most cases these reactions are caused by something that makes us uncomfortable or a need that is not being met.

Usually we are able to manage our reactions, quickly process what is happening and filter our response. As dementia progresses, a person will start to experience the world around them differently. For this reason, it may become more difficult to control emotions, reactions and responses. This may lead to changes in how a person reacts physically and emotionally to their environment (i.e., mood changes, restless, anger etc.). It is often better to view these changes as 'personal expressions'. We have created a resource to explain what we mean by personal expressions. 

In order to reduce situations that cause distress, it is important to learn how to respond and cope more effectively. It is important to understand what might cause distress. This can be very difficult. For example, sometimes a person may not even recognize or understand that something has happened to make them react in a certain way.

Personal expressions of people living with dementia can also be important in alerting family members and other care partners about their experiences. They are an important means of communicating unmet needs or aspects of their experience that need to be addressed. It is important for care partners to be able to identify situations that might cause distress in order to prevent them and work to understand the meaning of the expression or action. 

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.

Some common factors that can cause discomfort or distress include:

• Physical factors

  • A urinary tract infection or other undetected infection
  • Constipation
  • Pain or discomfort
  • Being hungry or thirsty
  • Fatigue
     

• Social situations and interactions with others

  • Crowds and loud noise
  • Being rushed and not being included in plans
  • Being tested, quizzed or pushed for answers
  • Being judged or put down by others; treated like a child
  • Not being listened to or included
  • Being dismissed by others
  • Lack of social supports
  • Others talking over you

• Communication

  • Difficulty finding words and having people jump in to quickly to finish your sentence
  • Communicating with others like being expected to make small talk, people talking too quickly, too loudly, or at the same time
  • Difficulties expressing yourself like when you are involved in a long conversation
     

• Your physical environment

  • Room or outside temperature is too hot or too cold; bad weather or dressing inappropriately
  • Feeling the pressures of travelling and not being in control (being a passenger) when there is bad weather or traffic
  • Lighting in a room
  • Being in an unfamiliar environment

• Emotional needs not being addressed

  • Grief and loss
  • Boredom
  • Not having feelings acknowledged and recognized
  • Needing human contact, love and understanding
  • Feeling lost

• Change of memory and ability

  • Misplacing items
  • Losing the ability to do something that you once were able to do, for example tie a tie or make change at a store
  • Mismatch between a task you are asked to do and your abilities in the moment
  • Disorientation

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.

There are several things that you can do to help manage situations that might cause distress or discomfort:

Acknowledge that distressing situations exist

The first step in understanding your reactions is to acknowledge that situations that cause distress and discomfort exist and that sometimes unwanted reactions happen as a result. The ways that people with dementia react can be an important and meaningful way to provide care partners with information about what is wrong.

Ask a trusted family member or friend for assistance

Once you have become upset or agitated, it is difficult to process your thoughts about what has caused you to become upset, but trusted family member or friends can assist you. Sometimes our reactions can be embarrassing, but what we have heard from others living with dementia, is that you need to think beyond the embarrassment and ask for help. Friends and family can help you identify what situations cause you distress and how to reduce those situations.

Write down everything that happened

When you experience an unwanted reaction, write down everything that occurred, because sometimes you may not be able at that moment to identify what may have caused you to react a certain way. Once you have had time to clear your thoughts, you can reflect on the event and get a clearer idea of what happened.

Identify situations that cause distress so that they can be avoided

Once you have acknowledged that sometimes unwanted reactions can happen as a result of stressful situations or experiencing discomfort, you can confide in a trusted person, and document what happened. See section above for examples of common situations that cause distress or discomfort.

Identify strategies to manage unwanted reactions if they cannot be avoided

If you are not able to prevent or avoid situations that might cause distress, it is a good idea to have strategies to manage or respond to them more effectively when they do happen.

Understanding what situations might cause distress or discomfort and what causes them is important not only for you, but also for your partners in care. Partners in care can help to minimize distress by listening to you about what you need and by providing gentle assistance.

See the section below for tips and strategies for managing situations that cause distress and discomfort identified by persons with dementia.

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program. (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.

Strategies that you can use to manage situations that cause distress or discomfort can depend on the type of situation and what is being experienced.

For example, if large crowds and noise are causing distress and discomfort, then leaving the area or finding a quiet place to escape for a few minutes can help. If the way others are treating you is frustrating, it is important to be honest with them about how you feel and discuss it with them.

If you are feeling frustrated with an activity you were always able to do but now find more difficult, try finding a way to alter the activity. There are also general strategies to help deal with situations that might cause distress or discomfort.

Some ways to help manage these situations in your daily life can be as simple as doing something to shift your attention away from the situation. Other options that can help you refocus and relieve feelings of stress and frustration include:

• going for a walk
• talking to a friend or family member you trust
• meditating or listening to soothing music
• practicing deep breathing
• letting others know how you are feeling
• step away and count to 10
• do something that will distract you
• go to a quiet place, close your eyes and relax

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.

When you find yourself bothered in a loud space, remove yourself from the space. Try to avoid public places at peak times. If you are at a restaurant and you find it loud, you can ask the manager to turn down the music or ask to be moved to a quieter part of the restaurant.

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.

Whenever you are going out, make sure you always allow yourself plenty of time to get ready. You can also use a calendar to keep track of events on a day-by-day basis. The best way to avoid feeling rushed is to plan ahead when possible. Put times on a note so you know what time you should start getting ready, the time you have to be ready, and when you have to leave. Focus on one task a day or at a time.

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program(MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.

Write down what you need to purchase, or what type of food you like before you go to the store or restaurant. You can also ask a trusted family member or friend to help you when you are placing an order, paying or making change.

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP. 

If you are having difficulty finding words or expressing yourself, make sure to let others know how you are feeling, pause and give yourself the time to collect your thoughts. If you are feeling uncomfortable in a situation where you need to make small talk, or other people are talking too loudly or too quickly, you can ask people to slow down their speech, to give you extra time to respond, and/or move to a less distracting space.

You can also try to participate in smaller group conversations or a one-on-one conversation. If you are feeling uncomfortable, you should also feel free to leave conversations you find overwhelming.

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.

A room's temperature, whether too hot or too cold, can cause discomfort for some people. Try to plan ahead for different conditions. Bring a sweater or wear layered clothing. Fans can also be a good way to maintain a more consistent temperature in a room.

Being a passenger in a car when there is traffic or bad weather can also cause distress. If this is a situation that can cause you distress, try to avoid being in the car if there is bad weather. Also, consider how you are feeling on the day to decide if you should go for a drive.

You can also try relaxation techniques like closing your eyes and practicing deep breathing to relax and make yourself more comfortable in the car.

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program. (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.  

Losing or misplacing items can be a big source of frustration. To manage these changing circumstances, try organizing your belongings with labels and identifying a set place for each item. It is also a good idea to focus on doing one thing at a time. When you go shopping, write out the directions and tasks to be performed before you leave. Shop with trusted family and friends and get to know the staff at the stores you shop at. Ask about setting up tabs at the stores and restaurants you frequent the most so that you or a family member can pay for items later.

Not being able to do something you used to be able to do can be frustrating and can cause distress. Be kind to yourself, make sure to get enough sleep and try not to sweat the small stuff. Slow down, focus on one thing at a time and have realistic expectations. If a task is frustrating, step away for a while and try again later or be comfortable asking for help. Find new or adapted ways to do valued activities such as doing easier crosswords or jigsaw puzzles.

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.

Feelings of frustration, stress and pain can happen when you feel you are not being listened to or included, degraded or judged. Loss and grief can also be common experiences for persons living with dementia and it is important to acknowledge your grief.

All of these feelings may be absolutely appropriate depending on the situation. In order to reduce situations that cause distress or discomfort, it may be important to remove yourself from these situations or avoid these situations entirely. Make sure to get lots of rest and share your feelings honestly with friends.

You can also try relaxation techniques to reduce anxiety, such as listening to music, exercising, reading, deep breathing and meditation. Caring for a pet can also have a calming effect because they give you comfort, companionship and love. If you are experiencing feelings of loss and grief it is important to acknowledge these feelings. For more information on dealing with loss and grief, review the Living and transforming with loss and grief section of this website.

Source: The information above was compiled with permission from the Murray Alzheimer Research and Education Program (MAREP). (2007). Managing Triggers: A 'By Us For Us" Guide. Waterloo, Canada, University of Waterloo: MAREP.