Caregiver Stress: Detecting Stress, Burden, and Depression

Welcome to the educational program Caregiver Stress: Detecting Stress, Burden and Depression.

This program will help you understand the sources of stress associated with caregiving for someone with Alzheimer’s disease, learn the common symptoms and effects of stress, and learn the common symptoms of depression.

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This is Lesson 6 of The Alzheimer’s Caregiver. You may view the topics in order as presented, or click on any topic listed in the main menu to be taken to that section. We hope that you enjoy this program and find it useful in helping both yourself and those you care for. There are no easy answers when it comes to the care of another, as every situation and person is different. In addition, every caregiver comes with different experiences, skills, and attitudes about caregiving. Our hope is to offer you useful information and guidelines for caring for someone with dementia, but these guidelines will need to be adjusted to suit your own individual needs. Remember that your life experiences, your compassion, and your inventiveness will go a long way toward enabling you to provide quality care.

Let’s get started.

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Five Categories of Stressors Associated with Caregiving

There are many sources of stress associated with being a caregiver for a person with Alzheimer’s disease. The major stressors can be categorized into five main groups. These are:

  • Changing Functionality and Behavior
  • Changing Relationships
  • Changing Lifestyle and Social Activities
  • Challenging Behaviors
  • Long-Term Care and Finances

Let’s discuss each of these in more detail.

Changing Functionality and Behavior

One major stressor comes from Changing Functionality and Behavior.

One of the most difficult aspects of caring for someone with Alzheimer’s disease is caused by the course of the disease itself. Although the needs and abilities of the person generally grow worse as the disease progresses, they may also fluctuate from time to time, and even day to day. Caregivers need to be able to constantly adjust to varying behaviors, skills, and moods of the person. They need to remain flexible with their caregiving approaches as well as their expectations.

Changing Relationships

Another major stressor is caused by Changing Relationships

As the disease progresses, the relationship between the person and members of the family and social network will change. People with Alzheimer’s will no longer be able to participate in family and social relationships as they once did. They will need more and more assistance with everyday activities, and caregivers will need to assume more and more responsibilities. When a relationship changes, there are often accompanying feelings of loss, fear, and sadness.

As relationships change, caregivers should talk with others to help cope with the normal feelings of loss, fear, and sadness.

Changing Lifestyles and Social Activities

A third source of stress is caused by Changing Lifestyles and Social Activities

As the disease progresses, more and more time will need to be spent on providing care, resulting in less and less time for a personal life. This can lead to dramatic changes in lifestyle and social activity.

Challenging Behaviors

A fourth stressor is Challenging Behaviors.

One of the most stressful aspects of daily caregiving is dealing with challenging behaviors from the person with Alzheimer’s.

Challenging behaviors can include aggression, such as pinching, hitting, or kicking, agitation, paranoia, refusals to participate, wandering, packing or rummaging, arguing, yelling, crying, and spitting.

Long-Term Care and Finances

The last category of stressors involves Long-Term Care and Finances.

For most caregivers, there will be concerns about long-term care and the financial cost of caregiving. Many family caregivers will have to work fewer hours or quit their jobs in order to care for their loved one with dementia. The person with Alzheimer’s may have lost a job due to the disease, adding to the financial burden on the family. Health insurance may be unaffordable or unable to cover all of the medical expenses. There may also be family conflicts about placing the person in long-term care facilities versus caregiving at home. There are several factors that contribute to stress about long-term care and finances.

To address some of these concerns, caregivers can contact the Alzheimer’s Association and other Alzheimer’s organizations to get information about financial and care resources and options.

Caregivers can also call a family meeting to discuss concerns and possible options. It is important to allow each family member to voice ideas in a supportive environment. Beginning a pattern of open communication can be an important coping mechanism during times of stress.

Case Study 1

Here’s a case study about a caregiver dealing with a stressful situation. Mary is the primary caregiver to Robert, who has Alzheimer’s disease. She sometimes gets frustrated because Robert is less capable of doing things for himself on some days than other days. What are some ways in which Mary can help Robert in this mealtime situation? Mary can:
  • A) Prompt Robert to use the proper utensils
  • B) Remove the fork to reduce confusion
  • C) Be observant of Robert at each meal, and adjust the level of assistance accordingly
  • D) All of the above

Answers:

Choice A: “Prompt Robert to use the proper utensils” is a good answer. Using short, simple verbal prompts can help people with dementia complete activities successfully and as independently as possible. In this case, Mary could calmly cue Robert to place a spoon in his soup. This may initiate the rest of the eating memories within Robert. Cueing Robert during his meal will increase the likelihood of him finishing his meal. It is possible that Robert requires this level of cueing only on some days such as today. So Mary should adjust her caregiving to meet the needs as it arises.
 
Choice B: “Remove the fork to reduce confusion” is also a good choice. Robert could have been confused by both the spoon and fork being presented. Removing any unnecessary utensils would have simplified the environment. Simplifying the environment can help in many caregiving situations. Reducing distractions can help those with dementia to focus on the task at hand. In this case, neither the sandwich or the soup requires the fork so limiting Robert’s choice to only a spoon may be helpful.
 
Choice C: “Be observant of Robert at each meal and adjust the level of assistance accordingly” is also a good choice. Caregivers who understand and accept that those with dementia may have fluctuating levels of skills, behaviors, and moods will be more prepared and less stressed when these changes take place. Being observant and providing the level of assistance needed at that moment gives caregivers the opportunity to adjust their level of assistance to match the person’s varying needs.
 
Choice D: Because Choices A through C are all good answers, Choice D, “all of the above,” is the best answer to this case study question. A key point to the scenario with Robert and Mary is to understand that individuals with Alzheimer’s disease may have fluctuations in their physical and mental abilities, even within the course of a day. One way to cope with the stress of fluctuating abilities, moods, and behaviors is to expect them.
 

Case Study 2

Here’s a slight variation of the previous mealtime case study. This time Mary identifies the lunch for Robert and gives him a little time to begin. Mary also places the most important words of her sentence last, such as lunch and soup. Saying the most important words last is one way of helping those with Alzheimer’s disease to understand and remember the important parts of your conversation. When Mary notices that Robert looks confused, she gently assist him and cues his first bite. This is just enough to get him started on his own. Notice that Mary also removes the unnecessary utensils that Robert may not need that day. This reduces the chances that Robert may become confused with which utensil to use. Mary is aware that even though Robert ate on his own successfully the day before, today he needs a little more help. Remember that being flexible about caregiving approaches and expectations can improve daily care and reduce caregiver stress and frustration.

The Stress Experience

The stress that you experience is determined by both the stressful event and your perception of that event. Therefore the same stressful event may be mildly stressful to one person but extremely stressful to another person.

Stress perception is partly determined by psychosocial factors, such as life experiences, living situation, emotions, and mental state. Genetics and personality disposition also partly determine how sensitive a person is to stress.

Normal Stress vs. Chronic Stress

It is important to make the distinction between stress that is normal or tolerable and stress that is unhealthy or excessive.

All people experience difficulties and hardship. During times of stress, your body has some physical reactions, and you may feel some discomfort for a short time. But this reaction is usually tolerable and temporary. Some degree of stress may actually help you work better or harder. In fact, you may find that the difficulties of a stressful situation have given you strength and wisdom.

Therefore the goal is not to get rid of all stress in our lives, but to identify when stress becomes prolonged and unhealthy.

Short-Term Stress

When a stressful event happens, the perception of that event will trigger short-term physical changes in the body. These temporary physical changes are referred to as an acute stress response.

During the acute stress response, the heart rate and blood pressure increase, breathing rate increases, the skin feels sweaty, cool, and clammy, the stomach may feel upset and diarrhea may develop. The mouth feels dry from decreased saliva production, and the blood sugar increases.

Long-Term Stress

Stress that becomes chronic or unresolved can have serious impacts on the mind and body and cause difficulties in daily life. Caregivers are at risk for long-term or chronic stress, because they usually provide care to another person over long periods of time and experience increasing levels of caregiving burden.

Chronic stress increases the risk for:

  • Heart disease
  • Strokes
  • Diabetes
  • Obesity
  • Digestive problems (such as reflux disease and indigestion)
  • Physical illnesses (such as the common cold, flu, infections, skin conditions, asthma attacks, and autoimmune diseases)
  • Sleep problems
  • Low sex drive
  • Depression and anxiety
  • Memory loss
  • Earlier death

Therefore it is important to monitor and control one’s level of stress.

Detecting Stress

The first step in detecting stress is to be aware that caregivers, overall, have a high risk of feeling stress. Stress is a normal reaction to the many challenging experiences caregivers face. However, when stress becomes chronic or distressful, there is cause for concern and action.

The second step is to become familiar with the common symptoms of stress. It is important to monitor oneself for the symptoms of too much stress. Stress can be difficult to monitor, because it can cause a diverse range of symptoms. It can affect your body, mind, and behavior.

Common Physical Symptoms of Stress

Stress can affect the body in many ways. It can cause:

  • Headaches
  • Muscle aches
  • Back pain
  • Chest pain
  • Fast heart rate (which can feel like a racing or pounding heartbeat)
  • High blood pressure
  • Shortness of breath
  • Fatigue or low energy
  • Sleep problems (such as insomnia, restless sleep, and nighttime awakenings)
  • Jaw pain, jaw clenching
  • Tooth grinding
  • Stomach problems (such as heartburn, indigestion, pain, and cramps)
  • Diarrhea or constipation
  • Weight change
  • Excessive sweating
  • Worsening skin conditions (such as acne, hives, eczema, psoriasis)
  • Sex problems
  • Worsening of asthma and autoimmune diseases (such as asthma attacks, lupus, and rheumatoid arthritis)

Common Mental Effects of Stress

Stress can affect the way a person thinks and feels. Stress can make one feel:

  • Sad
  • Depressed
  • Burdened
  • Guilty
  • Hopeless
  • Worthless
  • Overwhelmed
  • Insecure
  • Anxious
  • Exhausted
  • Angry
  • Frustrated
  • Dissatisfied
  • Irritated
  • Moody
  • Resentful
  • Confused
  • Forgetful
  • Unable to focus or concentrate

Common Behavioral Effects of Stress

Stress can also affect the way a person behaves. It can cause the following behaviors:

  • Arguing or fighting with others
  • Angry outbursts
  • Crying
  • Isolation and avoiding people
  • Less participation in enjoyable activities
  • Eating more or less than usual
  • Increase in stress-relieving habits, such as nail biting, skin picking, pen chewing
  • Increased smoking
  • Abuse of alcohol or drugs
  • Poor job performance

Stress and Depression

Chronic stress can increase one’s risk for depression. Many people think of depression as sadness, but that is not the only way depression can express itself. Symptoms of depression can vary from person to person.

Common symptoms of depression include:

  • Feeling sad or gloomy
  • Feeling helpless, discouraged, or hopeless
  • Feeling worthless, guilty, or overwhelmed
  • Feeling nervous, restless, irritable, or anxious
  • Concentration or memory problems
  • Loss of interest or pleasure
  • Inability to see the positive aspects of life
  • Thoughts of death or suicide
  • Appetite or weight changes
  • Aches and pains, such as headaches, backaches, joint pain, stomach pain
  • Diarrhea or constipation
  • Lack of energy, fatigue, or sluggishness
  • Reduced sex drive or sexual dysfunction
  • And sleep disturbances, such as sleeping more or less than usual

Listen to Your Body

If you are feeling any of these symptoms of stress or depression, you should speak with a healthcare professional. This is the first step to feeling better. As you feel better, you will be a better caregiver.

An important thing to remember about feeling sad or stressed is that it’s okay to have some of these feelings about your situation. But it’s also okay to ask for help. Take time to take care of yourself and your mental and physical health!

Coping with Stress

Being a caregiver to someone with dementia is a stressful role. But there are ways to manage that stress and reduce its impact on you. You can learn to take care of yourself under stressful circumstances and use coping strategies, such as relaxation techniques, exercise, healthy nutritional choices, social support, and professional therapy.

Summary

In summary, stressors associated with caregiving for someone with dementia include:

  • Changing functionality and behavior
  • Changing relationships
  • Changing lifestyle and social activities
  • Challenging behaviors
  • Long-term care and finances

It is important to distinguish between normal, tolerable stress and chronic, unhealthy stress.

Chronic stress can increase the risk for numerous health problems including physical illnesses and depression.

Stress affects the mind, body, and behavior.

Symptoms of stress and depression are diverse and can be mistaken for other diseases. It is important to be aware of the symptoms and monitor for them.

If you think you have symptoms of chronic stress or depression, get help. Talk to a healthcare professional and people you trust.

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Written by: Lena G. Ernst, PhD, MA, LBSW, LNHA (University of New Mexico)

Edited by: Mindy J. Kim-Miller, MD, PhD (University of Chicago School of Medicine)

 

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