Joy A. Glenner

by When Your Loved One Has Dementia

  7. Let the physician know ahead of time if you have questions you are uncomfortable asking in front of your partner. You can request a telephone appointment or see the physician separately. You can even provide a written statement of your questions or concerns ahead of time.

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  You Can Still Look Forward to the Future

  Do not give up on those retirement plans or special events you have been thinking about for years. The future may need to be different from what you had planned but can still create good memories.

  If your partner is still only mildly impaired, do the things you want to do now. For example, if you always wanted to retire to a place in the mountains, rent first instead of buying and see how you both adjust. If you wait until later, a move might be impossible.

  You will probably need to adapt your plans as the dementia progresses, but you may not need to cancel plans completely. Simplify, use “trial runs,” or perhaps get additional help.

  Simplify special events. For example, invite just a few guests to a fiftieth wedding anniversary party. Try it earlier in the day and for a shorter period. Perhaps you can have refreshments and dancing or dinner only rather than both dinner and dancing.

  Not sure if an event is a good idea? Try a short trial run before the big event. For example, try a two-day cruise before trying a long one. Simplify your life on board the ship too. Perhaps avoid the late-night parties and many of the off-ship excursions.

  Try bringing along a third person or an understanding second couple on that cruise or another type of vacation. Then you will have help if needed and occasional respite from caregiving.

  3 Communication, the Key to Quality of Life for You and Your Loved One

  Goal: This chapter will equip you with the tools you need for positive interaction with your partner and for effectively managing difficult behaviors (including catastrophic reactions).

  What Is Dementia Like?

  What is it like to have dementia? How does it feel when you can’t understand what others are telling you? It must feel as though you are continually in a new situation, trying to figure out what is going on.

  Try an experiment. Turn a novel to a page somewhere in the middle and read a couple of pages. Do you understand who is who and why things are happening as they are? It is probably confusing. Your partner feels this way every day. Just as you need to start from the beginning of the book to fill in the blanks, your partner depends on you to fill in the blanks for him or her. This dependence on you is why so many persons with dementia have “separation anxiety” when you leave them. You are their lifeline—quite a burden for you but so important to them.

  Positive Interaction Techniques

  Interaction is two-way communication. It is the process of using verbal language and nonverbal language such as facial expression and body language to send and receive messages. To communicate with your partner effectively, you need to suit your communication methods to the person’s mood, degree of attention, and general ability to function at that particular moment.

  We think of spoken and written (verbal) language as our primary method of communication, but 90 percent of all interaction is nonverbal. Think about how important nonverbal communication is to your partner with AD. The patient’s problems with communication result from some of the (PALMER) symptoms he or she is experiencing—short attention span and impaired language, memory, and reasoning and judgment skills—and you must adapt your communication techniques so that the person understands you despite these debilitating symptoms.

  The use of positive interaction techniques will not only help you and your partner understand each other better but will also, it is hoped, make your life together a more pleasant experience.

  The Basics of Positive Interaction Techniques

  Positive interaction techniques are the key to success with your partner. As a patient loses the ability to communicate with words, he or she may still understand some or even much of what you are saying and how you are feeling by reading nonverbal cues.

  • The person will probably act angry, sad, or upset when you appear angry, sad, or upset—just when you can least cope with it. This is called “mirroring.”

  • To gain positive results, you will need to try to act calm and relaxed (the way you want your partner to act) all of the time, even when you do not feel like it.

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  Box 3-1. Four Basic Rules for Positive Interactions

  1. Stay pleasant, calm, and reassuring to help keep your partner feeling that way.

  2. Always help your partner maintain positive self-esteem.

  3. Help your partner understand you by using simple sentences and repeating them as needed.

  4. Help your partner understand by using nonverbal cues.

  * * *

  One of the difficult things about dementia for you is losing the support and encouragement of your partner, the very things that make a partnership.

  Four Basic Rules for Positive Interactions (box 3-1)

  1. Stay Pleasant, Calm, and Reassuring to Keep the Person That Way

  Be aware of your voice. Tone, pitch, speed of speech, and inflection are all important. Your tone should be soothing and sound pleasant, especially if your partner is upset or angry. Keep the pitch somewhere in the middle. High-pitched voices can be jarring to the nerves; a low pitch can seem threatening. Moderate the speed of your speech. If your speech is too slow, the person may lose the thread of what you are saying; if it is too fast, he or she may not be able to follow. Inflection helps the person understand the meaning of what you are saying. Be very aware of it. Make sure that it helps him or her understand what you are trying to convey.

  Be aware of the message given by your body language. Keep your face relaxed and smiling. Your eyes need to look that way too. It is hard to keep your features calm and pleasant if you do not feel that way, but your partner will read your face and become upset if you do not look pleasant, calm, and reassuring. Be aware of your body posture and your hand and arm movements. Lean forward and open your hands and arms. Leaning back, folded arms, arms tight against the body, and clenched fists all convey a negative message.

  Make sure that what is going on in the physical environment around the person is also relaxing and serene.

  2. Always Help the Person Maintain Positive Self-Esteem

  Think of and treat your partner as your equal, all the time, regardless of his or her behavior at the moment. This is called “unconditional positive regard.” Avoid negatives (“Don’t do that!”) or criticism (“You look terrible in that old shirt!”).

  Never talk about your partner in front of him or her, and don’t let others do so. This is hard because it may often seem as though your partner is mentally far, far away. It also is easier to talk right where you are than to move. You may not even realize that you are doing it. Even an affectionate home care aide or your physician may make this mistake. If others are discussing your partner in his or her presence, deliberately and obviously include your partner in the conversation or ask the other person to wait a minute and guide him or her off to one side to talk. Be sure to talk to the person who was speaking in front of your partner about it later to reduce the risk of it happening again.

  Never use “baby talk” (for example, using the phrase “go potty”) and avoid a condescending tone of voice. This can be very embarrassing for the patient. Again, you may not be aware of it, so be careful, and do not let others do it either. If there are terms of endearment you both use or a childhood phrase works to get the message across, however, then it is okay. Just don’t use such terms when it is unnecessary.

  Avoid “why” questions (for example, “Why did you put mashed potatoes in your coffee instead of the cream?”). Your partner will feel flustered and embarrassed and cannot tell you why. Remember that basic symptom, lack of reasoning and judgment: your partner cannot be expected to explain his or her actions.

  Let the person be as independent as he or she can safely be. Give th
e patient choices whenever possible (also see chaps. 5 and 6). For example, if he or she cannot choose clothing independently, hold up two shirts and ask, “Would you like to wear the blue one or the yellow one?” If the person cannot choose, try, “I think you would look wonderful in the yellow shirt.” You are really not giving the person a choice, but it is offered as a suggestion, not an order.

  3. Help the Person Understand by Using Simple Sentences and by Repeating as Needed

  Caution: Communication is important to every human being. Speak to mildly impaired patients as normally as possible. They will be offended if you simplify ideas and sentences too much. At the other extreme, even the best communication techniques may not work with very impaired patients. The act of communicating, however, is important to both of them.

  Use simple sentences. Remember that mildly impaired patients need less simplification. For patients with moderate and severe impairment, use simple sentences and repeat them as needed. For example, one idea and one step is “Joe, sit down.” “Joe, pick up the photo album and come and sit down with me” is two ideas and two steps. A step is an action complete in itself. It doesn’t require memory of other steps to complete it.

  Repeat as needed. It may take more than once for your partner to understand an idea or instruction from you. You may need to repeat it several times. If it is an instruction for a task, repeat it as the person does it, so the person does not forget what he or she is doing. Remember that basic symptom, a short attention span. When repeating, if your partner doesn’t understand you after a couple of tries, choose a different phrase. For example, if he or she doesn’t understand “It’s time for lunch” after a couple of repeats, say, “Come and eat a sandwich,” or another phrase your partner might understand better.

  4. Help the Person Understand by Using Nonverbal Cues

  Remember the importance of using good body language. Also use eye contact. First, get and maintain eye contact. Then, if you’re helping your partner undertake a task, show the person the objects involved to help him or her understand. Make sure your partner first sees you and then sees what you are holding, pointing at, or touching. Look at the person’s eyes to see if he or she really sees and understands. There is a difference between just looking at something and looking at it with understanding.

  When you need to guide them somewhere, very impaired loved ones may respond best if you stand facing them, grasp both of their hands gently, and pull them forward, keeping eye contact, as you walk backward toward where you need to go. For example, if it is time for lunch, try standing in front of your partner, look into his or her eyes, and say, “Hi. It’s time for lunch.” When you can tell from the person’s eyes that he or she sees you, show the lunch plate and say, “It’s time for lunch.” When you see the person look at the plate, repeat that it is time for lunch. Then say, “Sit down to eat,” pointing to the table and tapping the chair. When the person sees and understands, guide him or her, by both hands if necessary, to sit down.

  Use all the senses to give cues: visual, olfactory, auditory, and tactile. If your partner is mildly or even moderately impaired, he or she will probably not need as many cues as someone who is severely impaired. It is important not to help too much. This can create what is called an excess disability (see also chaps. 5 and 6). No matter how hard you try, it may be very difficult to communicate with a severely impaired partner. It may be difficult to understand the person’s verbal and nonverbal communication correctly.

  If you can’t understand your partner, try not to let your frustration show because this may upset him or her and make communication even more difficult. Try to put yourself in the person’s shoes and figure out how you would feel if your loved ones could not understand you. This is empathy. Give the person a hug; tell your partner you love him or her. Show your sympathy, interest, and support. This is validation. Don’t ignore him or her or walk away. If you just nod, even if you don’t understand, you are acknowledging the person’s importance and need to communicate. Communication is a basic need of all human beings.

  The person may use nonsense words or be nonverbal. The person may mutter to him- or herself and look down most of the time, not at others. If this is true for your partner, try to figure out what the person wants or needs by observing nonverbal cues, such as body language and facial expressions.

  The person may say the same word or phrase over and over (perseveration). He or she may be “stuck” on the word and be unable to get past it or may be just vocalizing. Try giving the person a “jump start”: say the word the person says, and then pause. The person may then be able to complete the thought. Also look at nonverbal cues: where the person is looking, his or her facial expression, body language, and actions.

  Bob’s father, Harry, had slowly lost most of his language skills with the progression of dementia. He would try to tell Bob something and be unable to say the word he wanted, would get frustrated, and then would have even more trouble speaking. He had the most trouble with nouns and adjectives—the specific names of and descriptive words for everyday things. When Bob was helping him dress, he would tell Bob he wanted to put on his _______ and lose the words. Or, for some reason, he would use the word brown to fill in the blank for any word he could not say. For example, he might say, “I want to put on my _______ brown.” If he gestured to his upper torso, Bob would fill in the statement with “your shirt.” He would then guide Harry to the closet, pick a shirt, show it to him, and say, “What about this one?” Harry still maintained very definite preferences and would either agree with Bob’s choice or shake his head and point to another one.

  Bob knew to allow extra time for dressing and other tasks. But when time was short for dressing, he would get the appropriate clothes and just say, “This will look great on you, Dad.” He would make sure Harry was looking right at him, that he saw his warm facial expression and smile, heard his calm tone of voice, and actually saw the garment. He would accompany the instructions with a hug or gentle shoulder rub. This usually worked because Harry interpreted Bob’s actions as meaning he was not angry or impatient, just making a suggestion.

  Managing Difficult Behaviors

  Some patients with dementia stay calm and unruffled throughout the disease process, but, unfortunately, these folks are few and far between. You need to “be a detective” to deal effectively with difficult behaviors common to dementia.

  Keep in mind that you cannot make your partner behave normally again, but you can often make difficult behaviors easier to live with. Adjust your expectations to suit the person’s level of disability and “pick your battles.” There are behaviors you may not be able to modify.

  By being a detective, we mean doing ongoing assessment. You must look at external, internal, and “invisible” causes of your partner’s behavior. External causes are things that have happened or are happening around or to the person. Internal causes are discomfort and pain caused by illness, living habits, or injury. Invisible causes are declines in functioning due to the disease process or misinterpretations of what is going on around the person, such as hallucinations and delusions. Empathy is important. If you try to put yourself in the person’s shoes, it may be easier for you to understand a problem and, it is hoped, improve the situation.

  You must change your perception of what constitutes correct behavior for your partner. This behavior is normal for someone with dementia. The changes in the brain cannot be reversed, and your partner’s behavior is beyond his or her control. All the behaviors have reasons, but they may be difficult for you to determine. Remember: this is not the person’s “second childhood.” The person behaves this way because he or she has a disability.

  Some Difficult Behaviors Common in Dementia (box 3-2)

  It is impossible to address all the problem behaviors individually in one chapter, but we hope the techniques given here will help you. Remember that your situation in coping with these behaviors is not unique. You can learn how to deal with them from fellow caregivers in supp
ort groups or read books specifically on managing difficult behaviors.

  Always remember that you can only do your best, and dealing with difficult behaviors is a very hard job.

  A Behavior Management Tool

  A detective looks at all aspects of a case: who, what, when, where, why, and how. This is what you need to do to try and manage a behavior problem (box 3-3).

  Decide If It Really Is a Problem

  Some behaviors are easier to live with than to challenge. Determine:

  • Is it harmful to you or to your partner?

  • Does it keep your partner from doing other things that might satisfy him or her more, given the stage of dementia?

  • Does it keep you from doing things you must do for your safety and health and your partner’s, or does it keep you from functioning well, physically and emotionally?

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  Box 3-2. Common Behavior Problems

  • Anxiety

  • Confusing day and night

  • Paranoia and suspicion

  • Wandering and pacing

  • Refusal to eat

  • Eating nonfood items

  • Depression

  • Hoarding: collecting and keeping items from others

  • Sexually inappropriate behaviors

  • Gulping or hoarding food

  • Apathy: disinterest, lack of motivation for activity

  • Poor grooming, dressing, and bathing habits

  • Outbursts: emotional, verbal, physical aggression

  • Repetitive behaviors: actions, words, or ideas

  • Rummaging: looking through and moving about objects, drawers, cabinets, closets, or boxes

  • Inappropriate social behaviors: undressing in public, inappropriate conversation with others

  • Inappropriate toileting habits: use of containers other than the toilet or urinating or defecating in public