If you are a caregiver for someone suffering from Alzheimer's disease (AD), you may face difficult challenges as you try to provide care and understand the behavior changes of the person you are caring for. Understanding the behavior of a person with AD can help lessen these difficulties.
People with AD may exhibit the following behaviors:
- Extreme anxiety about daily life, which may be exhibited by asking questions and repeating information about once familiar events and/or people, preparing for appointments/day care well ahead of time and using notes and reminders endlessly.
- Apathy or a lack of initiative about tasks that used to be routine, though now feel overwhelming. For example, the person who always enjoyed puzzles but no longer does them because they are too overwhelming and require skills he/she no longer possesses.
- Frequent agitation may occur as people become less able to interpret their environment and control or express their feelings. For example, a person with AD may strike out at a caregiver.
The following strategies may help you cope with caring for someone with AD:
Set realistic and attainable goals. Often, caregivers try to make everything all right and strive for unrealistic goals and end up exhausted and frustrated. Perhaps your goal is to be sure that your patient is clean, comfortable and well fed. But accepting success at 80 percent, for example, will allow you to enjoy time you might have otherwise spent fretting about not reaching your goals. Although difficult, try to be comfortable with a less than perfectly groomed spouse or perfectly organized home.
Anticipate misinterpretation by your patient. A person with AD may no longer be able to accurately interpret verbal or non-verbal cues, which can cause anxiety and frustration for both you and your patient. Try to be clear and concise in your communications—repeating things as needed using the same words or message. Reduce extraneous noise and distractions when trying to communicate. Do not use confusing pronouns, such as he, she or it, but rather names and specific titles.
Remember that all behavior has a purpose. Many experts believe that some of the behavioral symptoms that people with AD exhibit, such as shouting or striking out, are meaningful. Although the person does not generally intend to disrupt things or to hurt someone, they do intend to be noticed and perhaps communicate a need that is not being met. In addition, it is important to remember that while these behaviors are meaningful, they are not intentional and the person is not doing this "on purpose," but more likely trying to convey a message that they can longer explain in words. Slowing down, trying to see the world through their eyes and trying to respond to the "feeling" behind the behavior, rather than the behavior itself, may prevent an emotional crisis.
Enjoy the good times. Many people with AD remain physically fit and retain their ability to be comfortable and involved in social situations quite late in the disease. Therefore, continue to socialize, travel, be physically active and participate in activities that are enjoyable to both you and your patient. Often, familiar activities will continue to be enjoyable for a person with AD and should be encouraged. However, trying to learn new tasks or starting new hobbies may be frustrating or overwhelming.
Reminisce about the past and encourage discussions about people and places that are familiar and evoke pleasant feelings for both you and your patient. Memories from the distant past are not usually affected and watching family videos, looking at photographs or reviewing travels from the past can allow you and your patient to continue to share experiences and feelings. Allow your patient to share the history they remember with family members, grandchildren and friends. This is fun for everyone and helps your patient feel connected to their loved ones.
Be flexible. Remember that AD is a progressive disease. Your patient's symptoms and needs will change over time. If strategies such as notes or reminders are no longer working, don't use them. A successful intervention at one stage may become a frustration and disaster at another. Seek help, ask for advice and learn from others who have had similar experiences. More challenging behavioral symptoms of a patient with AD, such as resisting care or being aggressive, can be particularly difficult for a caregiver and often require a very individualized approach. Talk to your doctor about treatment approaches, both pharmacological and non-pharmacological.
Your patient's safety is an important priority. As the disease progresses, memory and judgment become impaired and patients are often unable to anticipate or avoid dangerous situations. This can be an overwhelming responsibility for a caregiver and requires creative strategies for coping. The following recommendations may help ensure your patient's safety.
Supervision may become necessary for people with AD as they become more forgetful and their judgment decreases. It is best to assess each situation individually and gradually increase your patient's level of supervision as needed. This will help them maintain as much independence and autonomy as possible in as safe a setting as possible. It is often difficult to determine the level of supervision needed. It involves evaluating the risks and consequences of your patient's current and potential behavior and the ease/discomfort involved in protecting your patient.
When evaluating your patient's need for supervision, behaviors to review include:
- Ability to handle emergencies when left unsupervised
- Ability to use appliances safely
- Ability to safely answer the phone or door when left alone
- Tendency to wander. This may occur in later stages when patients are confused about where they are or are trying to find a familiar person or place. If there is a concern about this, enrolling your patient in the Safe Return program should be considered. This program, which is administered by the Alzheimer's Association, provides national registration and identification of people with AD to assist in locating them should they wander away or become lost.
Supervision strategies may include:
- Simple reminder phone calls for medications
- Alarms on doors to prevent exiting
- Personal supervision to prevent physical injury or harm
Modifying the environment to limit your patient's exposure to potentially dangerous situations can allow them to continue to be independent and safe. Especially in the early stages of AD, reminders and cues in your patient's environment may be enough to ensure their safety. For example, posting the steps involved in a task or labeling where things are kept may be extremely helpful to your patient.
In the later stages of the disease, you may need to employ strategies that limit your patient's exposure to potentially dangerous situations, such as installing childproof handles on cupboards containing potentially dangerous materials.
UCSF Health medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your provider.
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