Dementia Coping Skills & Behavior Management

This post will be of interest to those of you dealing with dementia.

I ran across this website today – Mental Help Net ( Much of the content is written by two psychologists. This post is about a section called “Dementia Coping Skills & Behavior Management.” Here is a list of the seven topics in this section along with a link directly to a webpage for each topic:

Coping Skills for Those with Dementia … c&id=15340

Coping Skills for Dementia Caregivers … c&id=15341

Services for Dementia Caregivers … c&id=15342

Communication Tips for Dementia Caregivers … c&id=15343

Behavior Management for Dementia Caregivers … c&id=15344
This addresses the A-B-C behavior chain — antecedent, behavior, and consequence. These three components are often assessed in classes about dealing with dementia-related behavior.

Behavior Management for Dementia Caregivers Continued … c&id=15345
This section explores the A-B-C behavior chain further with some examples.

Tips for Dealing with Specific Dementia Problematic Behaviors … c&id=15346
The nine problematic behaviors addressed include agitation, aggression, repetition (eg, repeating the same question over and over), hallucinations, suspicion, apathy, confusion, sundowning, and wandering.

Copied below is the second topic, Coping Skills for Dementia Caregivers, the fourth topic, Communication Tips for Dementia Caregivers, and the last topic, Tips for Dealing with Specific Dementia Problematic Behaviors.

Note that the Mental Help Net website contains advertisements. The organization supplies content on a variety of topics to various affiliated websites.



Coping Skills for Dementia Caregivers
Carrie Hill, Ph.D. and Natalie Reiss, Ph.D.
Updated: Jul 3rd 2008
Mental Help Net

Not only is a diagnosis of dementia difficult for the person with the disease; it also poses significant changes and sources of stress for those who care for the person with the diagnosis. Most individuals with dementia have a primary caregiver – usually a spouse, partner, or adult child – and some people have secondary caregivers, such as other relatives or neighbors. The following coping skills are useful to both primary and secondary caregivers, but primary caregivers will find them the most relevant due to the way that their lives have changed.

* Learn as much as you can about the disease as soon as possible. Although you may be reluctant to do so, you will thank yourself down the road. You will be better prepared to handle the variety of challenges associated with dementia if you know what to expect and have some ideas about how other people have handled similar challenges.

* Adjust your expectations by imagining what your loved one is going through. People do not want to have dementia; it is not their fault that they developed the disease. Most of all, try to remember that the person’s brain is not working properly. He or she is not engaging in this behavior on purpose, or to be difficult or annoying. Caregiving is a meditation on patience and understanding.

* Attend to your own physical and mental health. Make time for sleep, exercise, proper nutrition, socializing, and private time. If you are run down, exhausted, socially isolated, etc., you run the risk of becoming physically ill and overwhelmed and/or depressed yourself. You cannot help someone else without helping yourself first.

* Keep the lines of communication open with family and friends. Share your feelings about how you are doing in addition to how your loved one is doing. Those close to you most likely want to know what they can do to help, but they may not ask because they feel uncomfortable doing so, or do not know what to say. Even though it may be difficult, ASK FOR HELP when you need it. If people do not know how to help, think of some specific tasks that they can do. Try to tailor the request to the person offering the help. For instance, if neighbors are uncomfortable being around a person with dementia, ask them for help with getting groceries or running other errands, rather than pressing them to provide respite services (when someone spends time with your loved one so you can have a break). Similarly, if a friend enjoys a more “hands on” role, allow him or her to provide you with respite time to get away for a few hours or days.

* Make sure that legal and financial issues are in order, and include your loved one in the decision-making process as much as possible. Ideally, your loved one will initiate this process in the early stage of the disease while his or her decision-making abilities are still intact.

* Take an active role in your loved one’s health care. Form a working alliance with a physician and other professionals who are experienced in issues related to dementia and other cognitive disorders.

* Plan activities with your loved one that you both enjoy and that can be adapted to the person’s current level of functioning. Good examples of adaptable activities include walking, taking a drive, gardening, doing household chores, looking at pictures or magazines, watching movies or television shows, baking, listening to music, singing, dancing, and playing cards or other games.

If your loved one can no longer participate in an activity like he or she used to, remember to relax the rules and definitions of what is “appropriate.” For instance, if the person wants to help with household chores, let him fold a basket of laundry. Do not worry about whether things are folded correctly (or that the task is completed quickly). What is important is that he is participating in an activity that makes him feel useful. Likewise, if your relative enjoys playing cards but cannot follow the rules of poker anymore, try sorting a deck of cards into colors and suits instead.

* Monitor yourself for signs of caregiver burnout, such as anger, anxiety, irritability, depression (e.g., a loss of interest in normally fun activities, or feelings of worthlessness, guilt, or suicidality), social withdrawal, denial about your loved one’s diagnosis, denial about your role as a caregiver (e.g., you feel that your life has not changed dramatically even though you have left your job or given up most of your previous activities), extreme fatigue, sleep problems, and/or health problems such as ulcers, migraines, or high blood pressure. To prevent or address caregiver burnout, try joining a caregiver support group, which can provide education, emotional support, and connections to local resources that can help you meet your caregiving responsibilities. See the list of web resources at the end of this discussion for more information about support groups.

* If self-coping methods are not working, seek mental health care from a professional who has expertise in addressing caregiver burnout, depression, and grief. If you are having difficulty dealing with some of your loved one’s behaviors (e.g., suspicion, wandering), seek out mental health clinicians with expertise in behavior management techniques for individuals with dementia.


Communication Tips for Dementia Caregivers
Carrie Hill, Ph.D. and Natalie Reiss, Ph.D.
Updated: Jul 3rd 2008
Mental Help Net

As dementia progresses, it becomes more difficult for individuals to express their thoughts and feelings, as well as to understand what is being communicated to them. In order to enhance communication with your loved one, try the following tips:

* Speak slowly, at a normal level (not too loud), using a low-pitched (rather than a “Minnie Mouse”) voice. In addition, try to face the person when you are speaking to him or her (rather than carrying on a conversation out of the person’s line of sight). Speaking rapidly, loudly, or in a high-pitched voice can be overwhelming or upsetting for someone with dementia.

* Use short, familiar words and simple sentences that clearly express what you want to say.

* Allow your loved one sufficient time to respond. If he or she does not respond, it is okay to repeat your question using the same wording as before. If you ask the question in a different way, your relative might think that you are asking a different question and become overwhelmed.

* Ask only one question or give one direction at a time. Although it seems as though this will take longer than combining questions or instructions, it will actually save time because the person with dementia is less likely to become overwhelmed or confused.

* Give positive instructions; avoid saying “don’t” or giving negative commands. For example, instead of saying, “Don’t go in that room,” try saying, “Let’s go over here.”

* Avoid questions that require a lot of thought, memory, and words, or that put the person “on the spot.” For example, asking a person with dementia, “Can you tell your brother about the movie we saw this afternoon?” may be overwhelming, because he or she will either be unable to remember the movie or unable to explain the plot.

* Avoid instructions that require your loved one to remember more than one action at a time. For instance, tooth brushing is made up of many smaller tasks, such as picking up the toothpaste, taking off the cap, picking up the toothbrush, putting toothpaste on the brush, etc. Dementia affects the brain in such a way that a person may not remember every step or forget the correct order of steps in order to complete a task. It will save both of you time and frustration in the long run if you break tasks down into smaller steps that are more manageable for your loved one.

* Avoid arguing or disagreeing with your loved one. In order for two people to “successfully” have an argument, both parties must be able to use reason and logic. Because dementia affects reason and logic, arguing or disagreeing with someone with dementia is futile. For example, a person with dementia often becomes confused about the past and think that someone who has died is still alive. It is not helpful – and could actually be emotionally damaging – to try to convince the person with dementia that someone is actually dead. Instead, use the validation techniques described next.

* Validation techniques involve addressing the feelings of a person with dementia rather than focusing on the facts or accuracy of what the person is saying. For instance, if someone with dementia thinks that the year is 1970, and this is not harmful or hurting anyone else, let it go. Avoid trying to “reorient” the person to the correct year. Instead, try to identify feelings related to 1970. Is the person reminiscing about a pleasant time in his or her life? Tap into this pleasant feeling by asking more about it.

On the other hand, is the person upset, thinking she needs to go “home” because her mother has dinner on the table? Instead of trying to convince her that her mother is dead, try to discern the feeling behind the statement. Does she miss her childhood home? Her mother’s cooking? Ask her what her favorite meal was, or ask her about her old neighborhood. Chances are that she will start talking about old memories and forget about being upset. These are ways of validating the person’s feelings rather than trying to reorient the person to reality.

* If your loved one is upset, and validation or other techniques do not work, remove him or her from the upsetting situation slowly and quietly.

* Redirection techniques can work wonders when other communication techniques are not helpful. For instance, if someone with dementia is upset or preoccupied, try introducing a new activity that you know he or she enjoys, such as listening to music or looking at a photo album. Because of the short-term memory loss associated with dementia, the person will often move on to the new activity and forget why he or she was upset in the first place.

* Communication is often easier if the environment is calm, simple, safe, and quiet. For instance, if you are trying to talk to your loved one and the television is on, the dishwasher is running, and grandchildren are running through the house, your loved one might be distracted or agitated by all of the activity and noise. Try keeping things more peaceful and simple. Along those same lines, try not to have too many people visit your loved one at once.

Keeping a consistent schedule or daily routine will help keep your relative more relaxed; predictability can be calming and soothing. It can also be helpful to add memory cues around the home, such as pictures of key family members and friends with their phone numbers. You can also add picture labels on drawers or closets to identify where different items are kept. Reducing clutter and removing rugs or wires that could be tripping hazards will reduce your loved one’s risk of falling. Finally, keep the home well-lit using soft natural light. Avoid fluorescent lights, which can agitate people with dementia.


Tips for Dealing with Specific Dementia Problematic Behaviors
Carrie Hill, Ph.D. and Natalie Reiss, Ph.D.
Updated: Jul 3rd 2008
Mental Help Net

* Agitation – Individuals with dementia frequently become restless, anxious, or upset (when filling out a behavior chart, it is helpful to use specific, concrete words that clearly describe what your loved one is doing so you can truly track whether your changes work to decrease the behavior). To decrease agitation, listen to the person as he or she expresses her frustration to get a clue about what kind of antecedent is a trigger; try to eliminate and/or decrease triggers as much as possible. Pain, discomfort (being too hot, too cold, hungry, needing to use the bathroom, etc.), frustration, and overstimulation are all common triggers of agitation. It is also very important to examine your behavior in response to the person. If you are not already doing so, reassure the person that you are there to provide assistance and comfort. If it seems like the person needs something to do, try redirection to an enjoyable activity.

* Aggression – Aggressive behavior can include shouting, cornering someone, raising a hand to someone, or actually pushing or hitting. Unfortunately, aggression among people with dementia can happen suddenly and seemingly without warning. Try to identify what triggered the aggression so that the antecedent can be eliminated or modified as soon as possible. As difficult as it may be, react in a calm, reassuring way and focus on the person’s feelings. Reduce environmental distractions as much as possible, such as loud noises or potentially frightening shadows or movements. Redirecting an aggressive person to an enjoyable activity can be remarkably effective.

* Repetition – People with dementia often repeat a word, question, or action over and over again (e.g., saying “What are we doing today?” repeatedly). This behavior is usually harmless, but it can be unnerving and annoying for those who are caring for the person. Repetitive behavior is usually a sign of insecurity, since people with dementia are often looking for something comfortable and familiar – something over which they have some degree of control. To address repetition, look for a specific antecedent or reason for the repetition as well as for the emotion behind it. This can reduce your chances of responding impatiently with the person. If the repetition is an action, try turning it into an activity that makes the person feel useful. For example, if the person is constantly fidgeting with his hands, try giving him some socks to sort or some knick knacks to clean.

* Hallucinations – Hallucinations are sensory experiences that seem real, but are not. The most common hallucinations are visual (i.e., seeing something that is not really there) and auditory (i.e., hearing something that is not really there), but hallucinations can also occur in regard to taste, smell, and touch. Because hallucinations seem real to those with dementia, it is not helpful to try to convince the person that she is imagining things. Instead, recognize the person’s feelings, reassure the person that you are there to help, and redirect her to a pleasant activity. Also consider whether the hallucination is actually bothersome. If it is a “nice” hallucination (e.g., seeing a pretty orchard outside that is not really there), there may be no benefit in trying to discourage the behavior.

* Suspicion – Memory loss and disorientation can cause individuals with dementia to perceive situations inaccurately. They may become suspicious of others – even those close to them – and accuse them of theft, infidelity, or other offenses. As hurtful as it may be to be accused of something you did not do, try not to become offended. Remember that the behavior is caused by a disease that is affecting the person’s brain. Try to imagine what it would be like to continuously think your possessions are being taken or hidden (because you cannot remember where you put them). Do not try to argue with the person or convince him or her of your innocence. Instead, share a simple response with the person (e.g., “I see that you’re upset that your purse is missing; I’ll do my best to find it for you.”) and avoid giving complicated explanations. Redirection to another activity can also be effective in these situations. Another option is to store “back-ups” of commonly misplaced items (e.g., hats, wallets).

* Apathy – Apathy is a lack of interest in or motivation to engage in activities. While apathy may not seem like a serious behavior problem, it is not healthy for someone with dementia to simply sit around passively. Try to find out what may be triggering the apathy (e.g., being ignored or becoming overwhelmed with a task) as well as what kinds of consequences may be reinforcing it (again, being ignored, not having appropriate choices of pleasant activities). Even though the person is ill, it is important to keep him or her moving and as active as possible in order to maintain physical health and to prevent depression. Try adapting previously pleasurable activities so the person can participate at a level that is comfortable and not overwhelming. Even a small amount of activity is better than none at all.

* Confusion – Dementia often causes confusion about person, place, and time. In other words, the person may still know who he or she is, but may not recognize others and/or the current location, time, date, or year. An individual with dementia may also become confused about the purpose of objects, such as forks or pens. As frustrating as this can be for caregivers, the best way to respond is to stay calm and provide simple, clear, positive answers when the person asks for help. For example, if the person seems confused about the purpose of a spoon, simply say, “Here’s your spoon for eating your soup.” You could also calmly show the person how to use the utensil (e.g., by saying “watch me”). Never scold the person or talk to him or her in a belittling way for becoming confused.

* Sundowning – Sundowning is a term used to describe behaviors that intensify (e.g., increased confusion and agitation) in the late afternoon and early evening, and is most common with Alzheimer’s disease. There are several theories about why sundowning occurs, such as increased fatigue (and as a result, a reduced ability to tolerate stressful situations, such as a chaotic dinnertime or a rushed bedtime routine) or increasing confusion due to darkness and shadows. The best way to approach sundowning is to make late afternoons and evenings as simple and relaxing as possible. Reduce distractions, unscheduled activities, and behaviors that could be done at a different time of the day (e.g., switch to bathing in the morning) and keep rooms well-lit until bedtime.

* Wandering – One of the more dangerous behaviors among individuals with dementia, wandering may be goal-directed (e.g., the person thinks that he or she is going to a job or going “home” to a childhood residence) or non-goal-directed (i.e., the person wanders aimlessly). To reduce the frequency of wandering, make sure the person has plenty of supervised activity to channel his or her energy. Redirecting the person to another activity can also work. Interestingly, dementia sometimes affects perception in such a way that environmental approaches can help reduce wandering. For instance, a black square painted on the floor in front of a doorway – or simply a black doormat – may be perceived as a hole, which can prevent the person from leaving the home.