Problem Behaviors of Dementia Disorders

Caring for someone with dementia is a difficult task, filled with everyday challenges. One of the biggest struggles caregivers face is dealing with problem behaviors. These can range from difficulties remembering recent and past events or persons to marked bizarre behaviors. Understanding the nature of these problem behaviors and using different strategies for dealing with difficult behaviors can help caregivers cope better with their loved one's changing levels of abilities and new conducts. The following are some practical suggestions for dealing with some of your loved one's behavior problems.

Tracking the problem: Many times caregivers are able to prevent the occurrence of a problem by becoming aware of the magnitude, frequency, and pattern behavior contributing to problem behavior. Before making any changes, it is always a good idea to track the severity of the problem by making notes of the frequency and possible triggers. That is, how serious is it, how many times does the problem occur, and what happened before the incident? The following are some suggestions to help you monitor the problem.

? Keep a log of the seriousness, frequency, and possible trigger for your loved one's problem behavior. By keeping a log, not only will you be able to discover possible triggers associated with the behavior, but it will also give you an opportunity to determine if you are making progress in solving this problem.

TABLE 3.3 A Sample of a Session-by-Session Protocol Developed for the Videocare Project (Continued)

Problem Behaviors of Dementia Disorders

? Make notes of any physical, emotional, and environmental conditions prior to the occurrence of the problem. You may find a pattern that can help you get a better understanding of the possible triggers.

Obtain medical advice regarding the problem behavior: A problem behavior may sometimes be the result of other medical problems, such as a negative reaction to a new medication or physical signs of pain or discomfort. Medical conditions can increase the frequency of a problem behavior aside from the cognitive limitation frequently associated with a diagnosis of dementia. A treating physician or a specialist, such as a psychologist or ear/nose specialist, can easily diagnose these problems. They will be able to point out the root of the problem and provide your loved one with adequate treatment. The following are some suggestions that can help you determine if your loved one's problem is due to another medical problem.

? Contact your loved one's treating physician and request an appointment to rule out possible medical causes for the problem behavior. You may need to request a referral to a specialist for further tests, if your treating physician is unable to address the problem.

? Make sure you are prepared when communicating with the doctors or related medical staff. That is, understand the nature of the problem (refer to your log), prioritize your concerns, bring a list of relevant medical information (list of medications, etc.), and something with which to take notes. We also suggest you arrive a few minutes before the appointment in case you need to fill out any paperwork or meet with another office staff member before meeting with the doctor.

? Listen to the communication menu, Communication with Health Care Providers on the E-Care Caregiver Network.

Common problem behaviors: Each person suffering from symptoms of dementia may exhibit different behavioral problems. We selected a few common problem behaviors that caregivers have identified for us as occurring at one point of their loved one's illness.

? Wandering

A person with symptoms of dementia may wander away from home or from their caregivers. There are some steps you can take to help reduce wandering and to protect the safety of your loved one if wandering does occur. It is helpful to engage the person in exercise such as walking and encourage movement to reduce restlessness and agitation. It also helps to involve your loved one in productive activities and to reassure them if they feel lost or disoriented. Always make sure that they have some kind of identification and that you have a recent photo of them readily available to help identify them should they become lost. Keep your doors locked and your home secure by installing deadbolt locks on the exterior doors. You should also inform your neighbors of the person's condition and keep a list of emergency phone numbers easily available. You may also want to enroll the person in the Alzheimer's Association Safe Return Program, a nationwide identification system designed to help with the safe return of people who wander and get lost. To find out more information on this program, use the resource guide to contact the Alzheimer's Association.

? Perseveration (repetitive speech/actions)

A condition of dementia can cause a person to exhibit unusual behaviors such as repetition of a word, a question, or an activity. This can be extremely frustrating to you as a caregiver. To help reduce problems with this type of behavior, you should try to stay calm and be patient and accept that the behavior is part of a disease. Try to identify if anything triggered the behavior and if there is something that the patient needs or wants. Also try to reassure the person and attempt to distract them. For example, you might have

TABLE 3.3 A Sample of a Session-by-Session Protocol Developed for the Videocare Project (Continued)

Problem Behaviors of Dementia Disorders

your loved one listen to music or take a short walk. Avoid reminding the person that he or she just asked the same question. In some cases, ignoring the behavior or question, though frustrating, may be effective. Also do not discuss plans until immediately prior to an event. You also might want to place signs or cue cards in easy-to-see places to remind the person of upcoming events such as dinner time. Finally, be sure to check with your physician to make sure the person is not in pain or suffering any side effects from prescription medications.

? Incontinence

Many people with Alzheimer's disease or dementia develop problems with bladder control and begin to experience incontinence. This can be upsetting to the person and also be difficult for you as a caregiver. You can manage incontinence by changing the person's routine, clothing, or environment. However, at some point you need to accept that incontinence is a permanent condition of the disease. Initially, it is important to try to find the reason for the loss of control. It may be due to a medical condition, so make sure to discuss it with your physician. It may also be due to stress, problems in the environment, or clothing. To help manage problems with incontinence: develop a routine for taking the person to the bathroom and try to stick to it as much as possible; watch for signs that the person may need to use the bathroom and respond quickly; and try to identify when accidents occur so that you can plan ahead. Also make sure that there is a clear path to the bathroom and that it is easily identified and keep your loved one's clothing simple and practical so that it is easy to remove.Products such as pads or adult diapers may also be helpful. To help prevent problems with nighttime incontinence, limit the person's intake of fluids and drinks such as coffee, tea, or cola. You might also want to consider having a portable toilet near the bed. Finally, if an accident does occur, try to stay calm and be understanding and reassuring. Remember that accidents are embarrassing. Also, be willing to try different techniques and strategies, and remember what works for one person may not work for another.

? Communication

A condition of dementia results in a number of changes that make it difficult for a person to understand and remember what others say. They may also have difficulty expressing their own thoughts and needs—this may be extremely frustrating for you as a caregiver and for the patient as it may contribute to their feelings of loneliness and fear. There are several things you can do to help improve communication and your relationship with your loved one. For example, it is important to reduce distractions and keep background noise to a minimum. You might want to set aside a "quiet place" where you can talk. Try to avoid mixed messages and saying things in front of the person that you do not want them to hear. Make your messages positive and easy to understand—use simple words and try to keep messages short. Also, ask questions and give instructions one step at a time and repeat things if needed. It might be helpful to use signs, labels, and written reminders.

Also identify yourself if your loved one has trouble remembering who you are and address them by name. Speak calmly and try to maintain eye contact and stay near the person.

It also may be helpful to act out activities you want the person to perform. Try to offer some type of affection such as a smile or a hug. Offer or supply a word if the person is having word-finding difficulties and repeat the last word if they forget what they are saying in midsentence. Remember that the words the person is saying may not reflect exactly what they want and they may repeat words or phrases. Repeat things back to make sure you understand. Finally, be patient and allow enough time for response and be careful not to interrupt or treat the person like a "baby" or as if they were not there.

(Continued )

TABLE 3.3 A Sample of a Session-by-Session Protocol Developed for the Videocare Project (Continued)

Problem Behaviors of Dementia Disorders

Personal hygiene

Personal appearance is important, and helping your loved one with grooming and dressing will allow him or her to maintain a sense of dignity and positive self-esteem. For a person with a condition of dementia, getting dressed can be frustrating and challenging. He or she may experience problems choosing what to wear, how to get clothing on and off, and managing buttons and zippers. To help your loved one with dressing, simplify the choices of clothing for the day and keep closets and drawers free of excess clothing.

Help organize the process by establishing a routine and having the person get dressed at the same time each day. Lay out clothes in the order in which they should be put on or provide simple step-by-step instructions. Also, choose clothing that is simple and comfortable and easy to get on and off. For example, select clothing with elastic waists or Velcro instead of buttons, snaps, or hooks. Finally, plan a little extra time so that there is no time pressure.

Bathing can also be difficult and be frightening or unpleasant for a person suffering from dementia. If bathing is a problem, there are some things you can do to make it a more pleasant experience. Try to develop a routine time for the bath or shower, and plan the bath or shower for the day when the patient is most calm and agreeable. Prepare the bathroom in advance. For example, have the towels ready, draw the water in the bathtub and test the temperature, premeasure the shampoo, and keep the bathroom warm and comfortable. Tell the person what you are going to do, step-by-step, and allow him or her to do as much as possible. Respect the person's dignity and recognize that some people may be self-conscious; so have a robe or towel available. Make sure the bathroom is safe by checking the temperature of the water, avoid bubble baths or bath oils, and never leave the person alone in the bath or shower. You can also minimize safety risks by using a handheld shower, nonskid bath mats, a shower bench, and grab bars. Also make sure the floor is free from puddles. Finally, it may not be necessary to bathe everyday— sponge baths may be effective in between baths or showers.

Clinical Note: Review additional topics selected from the CHECK LIST.

Clinical Note: The therapist is encouraged to ask open-ended questions to help the caregiver relate his or her current situation to the information provided. The therapist should validate and track the information provided by the caregiver and link it to the session's educational material.

  • ? Of the behavior problems I reviewed today, which are you currently facing?
  • ? What strategies are you using to deal with your loved one's problem behavior?
  • ? Were there any strategies I covered that you would like to try?
  • ? What are other behavior problems about which you would like more information?

Clinical Note: Closure of session

1. Provide a brief summary of the material that was covered by highlighting and punctuating key points of the session through the experiences and comments given by the caregiver.

2. Encourage caregiver to use the VIDEOCARE to help him or her obtain more information on the session’s topic (Solutions to Common Problems Menu).

3. Remind caregiver of the support group sessions.

4. Set the next phone session date.

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