Dementia - Tips for Caregivers
by Laura N. Gitlin, PhD, and Catherine Verrier Piersol
According to the Alzheimer’s Association’s Alzheimer’s Disease Facts and Figures report “In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias”—and more than 60 percent of those caregivers are women. The emotional, physical, and financial stress these caregivers experience can be intense.
Take Care of Yourself
Caring for a person with dementia can be an exhausting job physically and emotionally. Many families providing care put aside their own needs, leaving themselves at high risk for stress, poor health, and other potential consequences. However, your needs are very important, and you have a duty to take care of yourself. Helping yourself stay as emotionally and physically healthy as you can while caring for a person with dementia is the best thing you can do for yourself and the person you care for.
One important way of taking care of yourself is to manage the stressors of providing 24/7 care. Caregiving is hard work, and behaviors associated with dementia can be very upsetting and challenging to manage. The person you care for may not understand how you are feeling but may nevertheless sense that you are upset or feel stressed. This, in turn, can make the person with dementia unhappy, agitated, or worried. By managing your stress, you are also helping the person with dementia.
One way of managing stress is to practice and use simple stress reduction techniques. Stress reduction techniques can help you manage the consequences of a behavior or the frustration and upset you may feel providing care or responding to a challenging behavior. Another way to take care of yourself is to know how to protect yourself if the person you care for becomes physically combative. Here we discuss stress and present a simple stress reduction technique for you to consider using on a regular basis.
What is stress?
Stress can be either short-term (acute) or long-term (chronic). Acute stress is a reaction to an immediate threat, commonly known as the “fight or flight” response. The threat can be any situation that is experienced as a danger. Examples can be as different as hearing a loud noise or having an infection. The physical response to stressors includes the release of stress hormones that produce an increased heart rate, blood pressure, and muscle tension. Once the acute stress has passed, the response to the threat fades away and the levels of stress hormones return to normal. This is called the relaxation response.
Chronic stress is a reaction to ongoing stressful situations such as caregiving for someone for a long period of time. In a long-term stressful situation, the body stays tense and does not experience the relaxation response. Thus blood pressure may stay elevated and the muscles may stay tense for a long period of time.
What are the consequences of chronic stress?
Psychological. Stress can diminish your quality of life by reducing feelings of pleasure and accomplishment. It can lead to depression and anxiety as well as feelings of anger and irritability.
Physical. Stress over a long period of time can also affect you physically. Stress increases the risk of infections, heart disease, and immune disorders. It can also lead to gastrointestinal and eating problems, sexual dysfunction, sleep disturbances, and headaches.
Cognitive. Stress can have an effect on memory, concentration, and learning.
Social. Long-term stress due to caregiving may also have an impact on relationships with other loved ones and friends. It is common for caregivers to feel that no one understands what they are going through and that dealing with the challenges is a lonely experience.
How do you know when you are stressed? Are you…
· Feeling irritable and impatient with others?
· Unable to sleep through the night?
· Experiencing a change in appetite?
· Unable to laugh and have a good time?
· Having difficulty keeping your mind on something?
· Having no interest in your own appearance or cleanliness?
· Withdrawing from or avoiding other people?
How can you manage stress?
Managing stress is a continuous process. Before you can start managing your stress, you first have to understand what causes you to experience stress and how you react to it in particular situations. Also think about what coping strategies work for you.
Once you identify these factors, you can start managing stress and effectively using stress reduction techniques.
Stress reduction techniques can help provide relief from stress when it occurs as well as help prevent stress from building up. They are proven methods of dealing with stress and can have a positive effect on your health, since relieving stress reduces the risk of developing health problems.
How can you prevent stress?
Take time out for yourself in order to stay connected with others and to provide you necessary breaks from caregiving, even if it is just 15 minutes at a time.
· Take a walk or make time for other physical exercise and healthy physical outlets.
· Make time to spend with friends and family you enjoy.
· Call friends, neighbors, or family on the phone to stay in touch with others.
· It is still important to laugh! Remember and use your sense of humor. Listen to tapes, records, television, or people who help you laugh.
· Talk things out with a friend or get professional counseling if needed.
· Learn and practice relaxation techniques.
· Maintain religious or spiritual practices that are important to you (for example, attend church or synagogue, pray, or read religious literature).
· Ask for additional help from others. This might be support from a family member, neighbor, or paid service. Formal support might include hiring someone for a few hours to stay with the person you care for, or having the loved one attend an adult day center.
· Engage in pleasant activities, even small ones, to help feel more relaxed and happy.
· Watch your favorite television show.
· Buy yourself flowers.
· Go out to dinner or a movie.
· Involve the person with dementia, such as looking at photos together or singing hymns together at church.
· Try to solve problems as they come up, rather than avoiding them. Ask for help or let others help you.
· Establish priorities and organize time more effectively. Let the small stuff go. Again, ask for help or let others help you.
· Try to stop running negative thoughts and attitudes through your mind. Learn healthier ways of thinking about yourself and your situation.
· Take time for your physical health.
· Keep your own doctor, dentist, and other professional healthcare appointments.
· Take prescribed medications as suggested by your healthcare professional.
· Try to get enough sleep and rest. Talk with your healthcare professional and other caregivers about ways to get enough rest.
· Avoid smoking or relying on alcohol or drugs to feel better.
How can you relieve stress when it occurs?
When caring for a family member who has dementia, you might find yourself in situations that are very distressing and upsetting. The following stress reduction techniques will decrease your stress when you are dealing with a stressful situation. These techniques can also be used throughout the day before stressful situations occur so that you feel more relaxed and focused.
Deep breathing. Taking a deep breath helps relax your muscles. To do this, take a deep breath in and hold it for a few seconds; usually three or four seconds is long enough. Do not breathe so deeply or so long that it becomes uncomfortable. As you exhale, try to relax the muscles in your jaw, shoulders, and arms, letting them go loose and limp. Try taking several deep breaths in a row to get added stress relief. Another option while doing this exercise is to say a word to yourself such as relax, peace, or let go while you are exhaling.
Counting exercise. To do this, take a deep breath in. Slowly let the air out, counting either from 1 to 10 or from 10 to 1.
Listening to music. Purposely playing a favorite song or a favorite type of music can be very relaxing.
Visual imagery exercise. Picturing a relaxing image in your head can have a relaxing physical effect on your body. Try this by closing your eyes and imagining a relaxing object, place, or activity. One example may be walking on a quiet beach at sunset. Imagine the sound of the waves gently rolling onto the shore, the smell of the salt air, the feel of warm sand beneath your feet, and the sight of the setting sun creating beautiful colors in the sky. Perhaps you collect a couple of interesting shells or watch a seagull walk in and out of the waves. You can experiment with the details of your visual imagery, adding to it or changing it to create a scenario that is most relaxing to you.
Progressive muscle relaxation. Muscle relaxation can help relieve physical tension in your muscles as a result of stress. This exercise can be beneficial but should not be done if you have any pain, injury to your joints, or other condition with which strenuous activity is not advised. Begin by bending your arm at your elbow to “make a muscle.” Squeeze the muscle very tightly and hold for three seconds. Then relax. Continue by making a fist. Squeeze your fist very tightly and hold for three seconds. Then relax. Straighten your arm and let it hang loose by your side. Think about the contrast in feeling when your muscles are tense and when they are relaxed. This progressive muscle relaxation exercise is a way to work toward decreasing muscle tension and tightness.
These are only a few stress reduction techniques that might be helpful for you. It is important to try different techniques to see which one works best for you. It is also important to keep practicing these techniques. The more you use them, the more effective they will be in helping relieve stress. Also, try to keep a record of the situations you find most stressful and how the different stress reduction techniques work for you in those situations.
The information presented here has been adapted from the NIH REACH I and II Study Materials: Belle SH, Burgio L, Burns R, et al. Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: A randomized, controlled trial. Annals of Internal Medicine. 2006;145(10):727- 38; and Gitlin LN, Belle SH, Burgio LD, et al. Effect of multicomponent interventions on caregiver burden and depression: The REACH multi-site initiative at 6-month follow-up. Psychology and Aging. 2003;18(3): 361-74. “Take Care of Yourself” is excerpted from A Caregiver’s Guide to Dementia (2014). Reprinted by permission of the publisher, Camino Books; caminobooks.com.