, ,

Helping someone with dementia recognize and interact with you

During the COVID pandemic, recognizing a friend, co-worker, or neighbor wearing a mask has been challenging.  While a person’s eyes give us some clues to the person’s identity, it often isn’t enough. We don’t have the benefit of seeing a person’s mouth and facial expressions. And masks often muffle our voices, making it harder to hear and understand.

This is especially true for people with dementia. Laurie has a friend, James, whom she met shortly after his diagnosis five years ago. They would talk, laugh and converse weekly about many things including his diagnosis. During the pandemic, Laurie didn’t see James for the better part of a year. She kept in touch with his wife, who said that while James’ dementia had progressed, he was pretty much his same old self.

When finally Laurie visited James, she wore a mask, as requested. She was excited and nervous to see James, as she wasn’t sure he would recognize her. He didn’t. When his wife said, “James, you remember Laurie, right?” James looked at Laurie quickly, shaking his head no.  When she took off her mask and said his name, he recognized her immediately, gave her a hug and they talked for a short time.

This experience reminded us of the importance of giving a person with dementia every chance we can to recognize and interact with us. This becomes harder in the later stages of dementia, but we believe that we never know when a person might recognize us. Keeping these points in mind may help you and your relative or those who work with your relative.

  • Whenever it is safe and allowed, remove masks, so that you can see each other’s entire face.
  • When you approach someone with dementia, move and talk slowly. People with dementia need more time to process who you are and what you are saying and doing.
  • Start by saying the person’s name and then introduce yourself. “James”. PAUSE. “It is Laurie.” PAUSE. “I am so happy to see you.”
  • Keep the conversation short.  Use simple phrases, especially if your relative or friend is in the later stages.
  • Maintain eye contact as much as possible. This often makes the person more comfortable. Try to be at their eye level, rather than above or below. In some cultures, it is rude to maintain eye contact.  If this is true in your culture, be sure you educate those who interact with your relative about this.
  • Recognize signs that your relative is becoming tired or agitated: wringing hands, facial grimaces, restlessness. If this happens, you might try involving your relative in another activity such as walking in the garden, having a snack, or just sitting together quietly.

As people with dementia become non-verbal, it doesn’t mean they can’t understand what you are saying. Some people with dementia will understand what others are saying long after they have lost the ability to speak. You can find many pointers for talking with your relative with dementia in our book Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, which equips you to address communication challenges throughout the stages of dementia.

Laurie White and Beth Spencer, Dementia Care Books

, ,

Caregiver tips for sheltering in place

Like many of you we have been ordered to “shelter in place” (Beth in Michigan, Laurie in California) to help curb or eradicate the COVID-19 virus. Although it is an inconvenience, we cannot help but think of all the caregivers for relatives with dementia.

Adult Day Centers are closed. Some family members are working from home, making it difficult to give full attention to their relative. Family members and friends can only visit with relatives in assisted living or skilled nursing communities through the window or on the phone or, in some cases, not at all. Caregivers caring for a partner or a parent at home may find it especially stressful as there may be no one who can stop by and provide a break.

Cancelled flights have separated adult children living a distance from a parent with dementia. From a daughter who lives far away from parents who are home alone, desperate about what to do after her flight was cancelled:

“I have not seen my parents in 6 months and was planning to visit in late March until the COVID-19 virus. My mom’s doctor said contracting an illness like pneumonia could have devastating effects on her FTD (Frontal Temporal Dementia) prognosis; I presume COVID-19 could be a similarly bad situation. My dad is with her, but he has heart problems and an underlying respiratory condition. What would happen if one of them became ill with COVID-19? I am frantic not knowing what to do.”

Whether family members live with, close by or far from their relative with memory loss, it can be a stressful time. Here are some suggestions that may help you:

Staying healthy

  1. Know signs and symptoms of the virus. If you suspect your relative may have COVID-19, contact their doctor immediately. The number of testing sites offering testing is increasing daily. Learn more at the Center for Disease Control website or your county health agency.
  2. Know other illnesses that may cause increased confusion or agitation in people with dementia: Infections, dehydration, fever, and pain. If in doubt, call your doctor.
  3. Minimize your relative’s contact with other people. Older adults are more vulnerable to this virus than younger populations.
  4. Wash hands thoroughly throughout the day. Having favorite music in the background or washing hands together may help your relative be more willing to wash her hands. If this is not possible, try using hand sanitizer often. Check the Environmental Protection Agency website for recommended products to sanitize surfaces.

 Logistics

  1. Ask your relative’s doctor about filling prescriptions for more days. This may reduce the number of trips to the pharmacy. Pharmacies are considered an essential business and are open.
  2. Some essential businesses are abbreviating their hours. Call ahead if you are planning to go to the grocery store, the bank, etc.
  3. Some home care agencies are open for business. If you are feeling more stressed, and a home care agency is already providing care to your relative, consider asking for more hours. If you are not using home care services, consider calling and asking if they are taking new clients. There may be a shortage of home care workers, but it is definitely worth asking.

Caring throughout the day

  1. The book Best Friends Approach to Dementia Care, by our dear colleagues David Troxel and Virginia Bell, offers information and strategies to help caregivers get through the long days of caregiving. Caregivers have and will surely find this timeless book helpful.
  2. A person may become more confused because their routine has been disrupted. Try to stick to the same daily routine each day. If confusion leads to behavioral problems, our book Coping with Behavior Change in Dementia may be a helpful resource.
  3. Eliminate coverage about the virus on your TV or computer. People with dementia may not understand it and become frightened or agitated hearing about the seriousness of the virus.
  4. The stress you might be feeling is contagious and your relative may feel it too. Although she may not fully understand COVID-19, she may feel upset which can lead to a change in behavior such as agitation or sleeplessness.
  5. Take walks, keeping a safe distance. Being outside and getting some exercise can reduce stress for both of you.
  6. Share activities. Look at old photos together. Try a jigsaw puzzle. Involve your relative in a household activity such as dusting, vacuuming, etc. Try doing a favorite hobby together, or baking cookies, cleaning the toolbox, sorting clothes or coins.
  7. These are stressful times for all of us and it is important to take care of yourself. Yoga, meditation, a short walk, eating and sleeping well are very important right now. Reach out to a friend on the phone. Scheduling FaceTime sessions with friends and other family members can help with feelings of social isolation.

Caring for yourself

  1. Many Alzheimer’s Association chapters are offering virtual caregiver support groups. Visit Alz.org to see if the chapter near you is offering a group.
  2. Ask for help. Take help that is offered to you. Neighbors, friends, high school students, and Eagle Scouts are reaching out to do errands such as pick up groceries or medications, help with outdoorhandling transitions in dementia care chores, or take a walk with your relative (If this is offered, ask the volunteer about any possible exposure to others within the past 30 days.)
  3. Some therapists are offering phone or video therapy sessions.  There are also hotlines if you are feeling desperate, including the Alzheimer’s Association’s 24/7 helpline, 800.272.3900.

We wish you all the best as our country goes through this difficult time.  Hoping for all caregivers and their relatives to stay well.

 

Laurie White & Beth Spencer, Co-authors, Coping with Behavior Change in Dementia and Moving a Relative and Other Transitions in Dementia Care.

 

respite care can be lifesaving for caregivers
, ,

How to get your relative to accept help—so you can take a break

respite care can be lifesaving for caregiversCaregivers need breaks. Respite care can happen many different ways. You might get a break by hiring a home care worker. Perhaps other family members can step up and rotate time with your relative. Taking advantage of adult day programs or temporary stays in a residential setting is another possibility.

All of these possibilities rest on getting your relative to agree to new people, routines, and places. Without agreement, you won’t get that break.

It’s not uncommon for people with dementia to refuse help of any kind. The secret to getting someone to accept help is to understand and address common and possible reasons for not accepting help. For example:

“She’s just stubborn.” This common statement usually indicates that the person with dementia is used to being in control of her own life and is still trying to be independent.

“I can take care of myself.” This sounds like denial, but has more to do with changes in the brain that result in the person not understanding things accurately such as how much assistance she needs.

“I don’t need any help.” When people develop cognitive changes, they may feel humiliated. Admitting that one needs help can be a very hard thing to accept for both the person with dementia and their care partners—especially after decades of independent living.

“When somebody helps me, I feel useless.” Feeling useless or worthless can lead to shame and make people very resistant to accepting help.

“I’m saving money for a rainy day.” For older people who have spent their whole lives saving money and being thrifty, the idea of spending money on help, especially when they think they don’t need it, may be very difficult to accept.  The idea of a sliding scale or “charity care” makes them feel uncomfortable.

“I don’t want strangers in my home or knowing my business,” or “I don’t trust anyone to come in my home.” Inviting strangers into one’s home is a big step, especially for people with a strong desire for privacy. Sometimes day programs are a better solution for that reason.

Are you the problem?

Ask yourself, are you the one getting in the way of accepting help? As family members we may have some of the same feelings and hesitations as our relatives with memory loss. Discussing this with a professional can help you sort out your emotional issues and decide how to proceed.

How to get help even when your relative refuses it

Arranging respite care by bringing help into the home for the first time can be very troubling to the person with dementia. She may feel insulted, humiliated or angry or a combination of these feelings. Here are ways to make the process easier:

Look for a familiar person to step in to help—a neighbor, friend, housekeeper or gardener who can become a part-time companion. This can happen gradually and subtly and your relative may not notice the change in role. The person with dementia may not know they are being paid.

Present the change as helpful for you rather than your relative. Bringing someone into the house IS help for you. Respite care gives you some peace of mind and may relieve you of some of your responsibilities. Mary’s mom Karen lived with her and her husband. For many months Karen was fine staying alone while Mary was at work. However, Mary began to get anxious phone calls from her mother. Sometimes when she got home her mother would say, “Where have you been? I’ve been so worried!” Mary took this as a sign that Karen needed someone with her and hired a home care agency a few hours a day.

She told her mother, “Amanda will be coming in a few hours while I’m at work. She’ll be helping me with laundry, cleaning, shopping and cooking, but she’s available to hang out with you if you want company. You don’t have to interact with her though if you don’t want to. She’s coming to help me.” Initially Mary made sure she was at home when Amanda came and made sure that Amanda understood the plan. Karen accepted help on these terms and eventually enjoyed doing things with Amanda. After several months she also allowed Amanda to help her with bathing.

Give her as much control as possible.  When people feel like they are losing control of their lives, they often dig their heels in.  Think about how to help her feel she has some control:

  • Offer choices whenever possible.
  • Involve her in the interviewing and decision of hiring home care.
  • Make it feel like she is helping you. She is!

Beth Spencer and Laurie White

Authors of Moving a Relative and Other Transitions in Dementia Care and Coping with Behavior Changes in Dementia

,

Understanding brain changes is key to compassion

Pat’s dad can’t remember from moment to moment that he has a brain disease affecting his ability to live alone.

Sara can get herself out of bed—but doesn’t know what to do next. She needs someone to prompt her through every step and help her get them in the right order.

These are frustrating situations for people with dementia and their care partners. Understanding more about brain changes caused by dementia can help us respond with compassion and patience.

Dementia changes the brain, and those brain changes also affect a person’s thinking and ability to function. The type of dementia will affect how and when these changes occur. Many affect what we call “executive function”—the cognitive areas that let us get through our days, perform routine tasks, make decisions and solve familiar problems. When these functions are impaired, the result may be inability to think clearly, do routine tasks, and make good decisions.

Most troubling can be anosognosia, or lack of awareness in the presence of a neurological illness. Pat’s dad can’t remember that he has a brain disease. He doesn’t see any problem with living alone and resists the idea of moving in with Pat.  It’s hard on Pat, too. She remembers a father with good insight into his life and situation.

“A person can abstractly understand that they have an illness, but not be aware of how it is affecting them,” says Mariana Longoria Ibarrola MD,  a brain health expert who contributed a chapter to our book, Moving a Relative and Other Transitions in Dementia Care. “Loss of insight into one’s own deficits is often baffling to caregivers who are used to having honest conversations with their loved ones.”

Lack of insight may lead to denial, inflexibility, or irresponsibility. Care partners frustrated by a person’s lack of insight might confront or blame.  All of these can lead to conflict. (Find ways to handle anger, aggression and conflict here.)

Understanding the “why” of these behaviors helps us respond in caring and appropriate ways. Knowing what is happening in the brain can help us use the powerful tools of empathy and forgiveness—and remember not to take things personally.  Then Pat can approach her father and decisions that need to be made from a different perspective.  Sara’s family can learn how to coach her instead of blaming her for being “lazy” or “resistant.”

Remembering that the disease is talking helps us stay calm, warm, and supportive. George and Harriet called his disease Mr. AD.  When things became challenging, one or the other would often say “That’s Mr. AD interfering again.”

Changes in the brain are behind all of the changes and stages of dementia. We love the way George and Harriet let “Mr. AD” take the blame instead of each other. Our books Coping with Behavior Change in Dementia and Moving a Relative and Other Transitions in Dementia Care offer many more ways to cope with “Mr. AD”.

Beth Spencer and Laurie White

Dementia Care Books

 

What can you do about anger and aggression in dementia?

Anxiety in people with dementia can often lead to agitation, which can lead to anger, aggression, and situations that can be dangerous for caregivers.

It’s easier to prevent anger and aggression in dementia than to defuse it once it has started. Using observation or behavior logs to identify patterns of behavior can help you figure out what’s causing it and develop strategies to try to prevent it and keep yourself safe.

Common causes of anger or aggression in dementia

  • Most often anger and aggression in dementia occur during personal care such as bathing, going to the toilet, or dressing. Frequently the person misunderstands the situation. She may feel threatened by someone trying to remove her clothes or touch her private areas, or feel humiliated, causing her to lash out.
  • Feelings of frustration, loss of control and fear can lead to angry responses. People who had tempers earlier in life may have more trouble controlling their tempers now. When they feel threatened or that their privacy is invaded or when they are having trouble doing a task, they may be quick to anger.
  • Feeling that one is being treated like a child, or that control is being taken away, can lead to anger. Most of us like to be in control of our own lives but dementia gradually takes that control away. Even though the disease is causing the problem, the anger is usually directed at the family member of caregiver.
  • Being told “no.”
  • A tense or angry environment is likely to prompt similar responses in people with dementia. Despite dementia, people are often sensitive to the “emotional environment” at home or in a care setting and will quickly pick up on other people’s tension or anxiety.
  • Sensory overload—too much clutter, too many people talking, too much loud television or radio, intense television shows—can overwhelm or frighten people and lead from anxiety and agitation to acting out aggressively.
  • Poor communication by a caregiver can lead to angry responses.
  • A fairly sudden change in behavior may have a physical cause. A urinary tract infection can trigger bizarre behavior or delirium. Arrange a medical evaluation to screen for infections, medical illnesses, medication changes or side effects that could be contributing to the problem.

Strategies to try for anger or aggression in dementia

  • Think about how to give your relative as much control as possible over decisions and situations that make her angry.
  • Try not to say no. Think of other ways to phrase things.
  • Don’t argue. You won’t win and this frequently leads to anger.
  • Do you sound patronizing or condescending? People with dementia are very quick to pick up on tone of voice and feel demeaned by it.
  • Try to figure out the feeling behind the behavior. Responding to the feeling is often one of the most helpful things you can do. “Molly, you sound so frustrated. I am sorry you are having such a hard time with this.” While you are not solving the problem, Molly knows you are listening to her. “Dad, you seem upset. Let’s sit here together for a few minutes. I will be here to help you. You are not alone.”
  • During personal care and other tasks, explain step by step what you are doing. “Dad, I’m going to help you take your pants off now.”
  • Create and maintain a calm, consistent environment.

Staying safe when your relative is angry or aggressive

  • Call for help if you feel the situation is really out of control or you feel threatened. This might be a neighbor or family member. Call 911 if you feel you are in danger.
  • Stay calm. Don’t raise your voice.
  • Don’t argue.
  • Back off. Leave the room if need be. If you feel threatened, leave the house and go to a neighbor’s.
  • Don’t get trapped. Keep yourself between your relative and the door so you can escape if you need to. If this is a frequent problem, talk with your relative’s doctor or consider whether it might be time to think about residential care.

Beth Spencer and Laurie White

Authors of Coping with Behavior Change in Dementia and Moving a Relative with Memory Loss

Can we go now? Handling repetitive behaviors

repeated questions can irritate a dementia caregiverRepetitive behaviors such as asking the same question again and again can be stressful and irritating for family caregivers.

Sometimes it feels like your relative with dementia is purposely repeating questions or statements just to annoy you. This is rarely the case. More likely, your relative is trying unsuccessfully to feel a sense of control. Behaviors that surface later in dementia—repeatedly tapping fingers, rubbing arms or thighs, fidgeting with things or pacing back and forth—are also a means of self-comfort.

Responding in a calm, reassuring manner is easier when you understand that physical changes in the brain often lie behind these behaviors. A person may not know that she is repeating herself. He may not know when or how to stop doing something, so he continues spooning his soup bowl when there is no more soup! Your relative may be completely unaware of his repetitive behaviors. You’re the one who may be upset.

What’s behind repetitive behaviors? 

Pain.  Pain can cause people with dementia to rock, pace or move in other rhythmic ways when they are uncomfortable. A person who is hungry may constantly ask, What’s for lunch? A person who feels cold may repeatedly check closets for a blanket or a sweater.

Depression and boredom.  Repetitive actions or gestures may be the only way a person who feels depressed can express herself or cope with certain places, situations or people. Feeling bored or unsure of what to do can prompt someone to repeatedly ask, What do I do now?

Emotions.  Your relative may be expressing an emotion such as fear, anger, or anxiety, and need reassurance. Wringing her hands or tapping fingers on a table may be a way that she is trying to comfort herself. She may be feeling vulnerable, especially in a new or unfamiliar environment with unfamiliar people. Being separated from a loved one can cause constant questions such as, Where’s Tom?

Lack of comprehension.  Asking What are you doing? may indicate that he doesn’t understand what you or someone else is doing.

Environment. Coats, shoes, purses, and umbrellas can prompt questions like Is it time to go now? And too much stimulation—too many people, too much activity or noise—can trigger statements like Let’s go now. Let’s go now.

What can you do?

Consider these approaches to interrupting or redirecting a repetitive behavior.

  • Apply our Behavior Detective approach to observe when behaviors occur and what might be causing them.
  • Respond with your full attention. Sometimes people with dementia no longer know how to get attention and may be using questions as an attention-getting device. Focusing on them and responding to their emotional needs can sometimes break the cycle of repetition for a while.
  • Respond calmly. Frustration or anger in your voice is likely to escalate your relative’s anxiety. If you find it difficult to conceal your frustration, try remaining silent.
  • Try ignoring the behavior or questions. If there is no response or reinforcement, the behavior may stop. However, some people may be very upset when they are ignored and become more agitated. For others, ignoring may eventually work. Be patient while you learn what works and doesn’t work.
  • Try a gentle touch when a verbal response does not help. A hug, holding hands or a gentle shoulder massage can be more reassuring than words.
  • Try giving the person a note with the answer on it. For example, if the person repeatedly asks When is lunch? When is lunch? write out Lunch is at 12 o’clock. Give the person the piece of paper. Sometimes, having the answer to look at can stop or at least diminish the question being asked repeatedly.

You can find many more suggestions and strategies in the Repetitive Behaviors chapter of our book, Coping with Behavior Change in Dementia: A Family Caregiver’s Guide. 

Change your own attitude

Sometimes, despite our best efforts, repetitive questions or movements will not stop. If the behavior is not stressful or a safety threat to the person with dementia, it may help to recognize that this is part of the disease. Changing your attitude to one of acceptance can sometimes help you cope with repetitive behaviors caused by changes in the brain.

Beth Spencer and Laurie White 

Dementia Care Books

 

When people can’t speak, behavior speaks for them

Behavior in people with dementia is a form of communication. When it’s no longer possible to express feelings through words, behavior speaks for them.

As dementia progresses, your relative may be unable to find the right words to say what she wants to say or ask. She may lose her train of thought or withdraw from conversations and social events because she can’t keep up or comprehend what other people are saying. And multiple conversations, loud noises or activities can be overwhelming. We knew one woman who would hold her head and moan whenever there were too many people in the room. Without using any words to describe the problem, she made her feelings perfectly clear!

The bottom line is: behavior is the language to learn as your relative with dementia loses communication skills. Pacing, wringing hands, moaning, are telling you something. Likewise, angry outbursts, anxiety, or aggression.

Learning to observe behaviors can help you understand what is behind them. When you understand the root cause of a particular behavior, you can try various strategies to address it. We call this the Behavior Detective approach. You can learn more about how to practice it here and here.

What are these behaviors?

Anxiety appears to increase among many people as they grow older. It’s easy to understand why your relative might be feeling anxious. Imagine not being able to hold onto memories or keep track of what’s happening, to have the world gradually become an unfamiliar, confusing and unpredictable place. Anxiety is not the same as anger, but especially when untreated, anxiety can lead to agitation, which in turn may lead to anger and aggression.

Agitation expressed through behaviors such as pacing, wringing one’s hands, crying or making loud repetitive noises, or trying to go home can indicate distress. Physical illness can cause or increase agitation. Many of us are anxious, agitated or irritable when we are sick and this is even more pronounced in people with dementia.  Pain can cause agitation. Sitting too long can cause it! Both anxiety and agitation can be a side effect of medications or changes in medications. Being tired, bored, frustrated, needing to go to the bathroom—all of these can trigger agitation.

Anger and aggression can be caused by the disease or by untreated depression.  People who had tempers earlier in life may have more trouble controlling their tempers now, especially when they feel threatened or are having trouble doing a task. Loss of control is another trigger. We like to be in control of our lives and schedules. Dementia gradually takes that control away. Feeling that one is being treated like a child or that control is being taken away can lead to anger. So can being told no.

Bathing, dressing and going to the toilet can be ground zero for anger and aggression. Frequently the person misunderstands the situation. She may feel threatened by someone trying to remove her clothes or touch her private areas, or feel humiliated that she needs help.  This often leads to feelings of frustration, loss of control and fear….which can lead to anger. Poor care partner communication—using too many words, a condescending tone, or approaching a person out of a person’s range of vision—can lead to angry responses.

Those angry responses are usually directed at the family member or caregiver. What can you do? Work on prevention! After a certain point, the person is probably not able to control his or her behavior. It will be up to you to observe the behavior, try to find a pattern, and then craft a way to respond that lessens or prevents anxiety, agitation, anger, and aggression. Your career as a Behavior Detective is beginning.

Beth Spencer and Laurie White

Why we wrote “the red book”

writing the red bookOur “red book” on coping with behavior change in dementia was published in the early 1980s—a time when people who cared for someone with memory loss had few resources.

Unfortunately, when these energetic, courageous and wise folks faced repetitive actions, agitation, incontinence, sleep problems, and other behavior changes in their relatives, the primary recommendation from professionals was medication. It was almost a knee-jerk response: Problem, medication. Another problem, increase the dosage. And so on.

While medications were sometimes necessary, we viewed them as a last resort.  Side effects could be serious, and sometimes medications could make care even more difficult.

We always recommended that caregivers and professionals try non-pharmacological approaches first, because we had seen so many instances in which using strategies other than medication actually made care easier. We recommended that caregivers use systematic problem-solving to analyze the situation (we call it becoming a behavior detective), understand what is causing the distressing behavior and develop responses that target the underlying causes.

For example, a nursing home resident was being sedated because of his agitation in the middle of the afternoon.  He would pace the halls, knock on doors and generally appeared very worried.  Medication made him drowsy and much more confused and he started falling. His family requested that the medication be stopped. When staff and family investigated possible causes of the behavior, they found that he was hungry and tired by midafternoon.  A light snack and encouragement to rest in his recliner calmed him and most of the agitation disappeared.

In the 1980s this approach was rare.  With funding from the State of Michigan, we worked with our colleague Anne Robinson to develop Understanding Difficult Behaviors, a manual to help families understand possible causes of common behavior changes at various stages of memory loss, so they could respond more effectively without resorting to medication.  Over the years it became known as “the red book” and was used by thousands of professional and family caregivers throughout the world.

After 26 years in print, a new “red book” was created by Beth Spencer and Laurie White aimed particularly at family caregivers, though many staff and facilities are using it as well.  Coping with Behavior Change in Dementia: A Family Caregiver’s Guide is still red, and it contains many more case examples and additional behaviors and strategies.  Coping includes new sections on physical intimacy and sexual behaviors, challenges and strategies for mouth care in people with dementia as well as a glossary, an updated introduction to dementia and an extensive resource list.  We’re pleased that one of our readers calls it “a ‘must have’ book and guide for anyone facing dementia as a caretaker” and we hope that you too will find it a useful resource for your family.

Beth Spencer and Laurie White

How to become a Dementia Behavior Detective, Part 2

managing challenging dementia behaviorsIn Part 1 of Becoming a Dementia Behavior Detective, we talked about how observing and logging challenging behaviors can help you discover the reason for distress in a relative with dementia—and then begin to figure out how to make changes that prevent or lessen a challenging behavior.

This is a key concept of our book Coping with Behavior Change in Dementia.  Because people with dementia who cannot clearly articulate their thoughts and feelings use their behavior to communicate, we caregivers need to become detectives. Like detectives, we need to observe, investigate, and draw conclusions from what we are seeing. We watch a challenging behavior over several days, taking notes in a simple record or log, to try to identify a pattern that helps us figure out the cause.

Previously we discussed the story of George and Ann.  Ann often gets agitated in mid-afternoon, frustrating both George and Ann and making them lose their tempers. To help understand what was happening and try to see whether he could devise a solution, George began to take notes on where and when the behavior occurred.

 

When Who was there? Where and what was going on? What was the behavior? What I tried and what happened
Saturday 3:00 I was with Ann Watching TV with me in my office while I read a book. Anger and agitation I yelled at her. She yelled back and threatened to hit me.
Sunday 2:00 I was with Ann We were in my office. I left Ann sitting on the sofa and moved to work at my desk. Ann became upset and started pacing. I ignored her, but Ann became more agitated and started crying.
Monday 4:00 I was with Ann I was taking a nap in our bedroom. Ann became upset and yelled at me because I would not get up. I asked Ann to lie down with me. I stroked her back and she calmed down for a short while.

 

From George’s behavior log, we were able to come up with a number of possible causes for Ann’s behavior and strategies for responding to it. Violent or disturbing TV shows may be one reason. Based on what we know about a typical day for Ann and George, she may be hungry, or not be eating enough protein. Perhaps George needs to limit Ann’s caffeine intake, or give in and give her more sugar!

Other possible strategies to consider:

  • George might try working in his office in the morning when Ann is calmer. If he can focus on his work, he may have more patience for Ann because he is not worried about getting his work done.
  • He could hire a companion for Ann at that time of day. Ann’s behavior is understandably stressful for both of them.
  • He could ask a friend or neighbor to be with Ann.
  • Ann might enjoy attending a day program where she could be with other people and participate in activities.

If all else fails, George should consult a doctor. If the level of agitation continues or increases, and puts both Ann and George at rick, it may be time to talk about a medication to reduce the agitation and anger.

Ask for help

If keeping a log is not feasible for some reason, or if it doesn’t yield clear results, find someone to help you systematically analyze the behavior. A friend, family member or a health care professional may be able to assist with this. Your local Alzheimer’s Association chapter may have someone available who can help.

The more minds the better!  Brainstorming with others can help identify many possible causes and solutions. Some, of course, you will rule out, but your list will lead to a number of strategies to try.

When you sit down together, make a list of possible causes of the behavior. Think broadly. Perhaps it would help to categorize causes. In this story, George could sort the causes into physical, emotional, and environmental causes.

We firmly believe that many of the most challenging behaviors may be minimized when caregivers learn how to identify root causes and try strategies that are known to help some people with dementia much of the time. For us, medication is the last resort. By becoming a Dementia Behavior Detective, you will find strategies that work to prevent or lessen the behavior—and lessen your relative’s distress as well as your own.

Beth Spencer and Laurie White

How to become a Dementia Behavior Detective

managing challenging dementia behaviorsAs a Dementia Behavior Detective, you can start to understand and address challenging behaviors with your loved one with dementia.

People with dementia often lose their ability to communicate their feelings using words. Instead they communicate through behavior. What does it mean when someone is pacing, wringing hands or moaning? Finding out is our task!

In our book Coping with Behavior Change in Dementia  we suggest becoming a behavior detective. Like detectives, caregivers need to observe, investigate, and draw conclusions. We watch a challenging behavior over several days, taking notes in a simple record or log, to try to identify a pattern that helps us figure out the cause.

For example, Ann was diagnosed with Alzheimer’s disease 5 years ago. Her husband George has been caring for her alone in their home where they have lived for many years. Ann is self-sufficient in eating and using the bathroom, but needs reminders and assistance to shower. She does not like to change her clothes and has been wearing the same clothes for several weeks.

Ann sleeps about 15 hours a day, going to bed around 7:30 pm and getting out of bed between 10 and 10:30 in the morning. Mornings are the calmest time of day, anchored by their habit of going out for pastry, coffee and juice to a nearby bakery. George and Ann split a sandwich for lunch around 1 pm with ice tea and a cookie. Ann has developed a real sweet tooth. To keep her from eating only cookies, candy and ice cream, George locks the sweets in the pantry.

Lately Ann has become very agitated in mid-afternoon. She walks around their home screaming at George, pounding on the table and walls and going in and out of the kitchen slamming cupboard doors. Ann has hit George several times when he approached her to try to calm her. At this time of day George feels like hiding in his office to read or pay bills and just stay out of Ann’s way so he won’t lose his temper and yell “shut up!”

With encouragement from a fellow caregiver, George began to keep a behavior log to see if it would shed any light on Ann’s behavior.

 

When Who was there? Where and what was going on? What was the behavior? What I tried and what happened
Saturday 3:00 I was with Ann Watching TV with me in my office while I read a book. Anger and agitation I yelled at her. She yelled back and threatened to hit me.
Sunday 2:00 I was with Ann We were in my office. I left Ann sitting on the sofa and moved to work at my desk. Ann became upset and started pacing. I ignored her, but Ann became more agitated and started crying.
Monday 4:00 I was with Ann I was taking a nap in our bedroom. Ann became upset and yelled at me because I would not get up. I asked Ann to lie down with me. I stroked her back and she calmed down for a short while.

 

What could it mean? 

This behavior log gives us some information and some ideas of why Ann might be acting this way. Now it’s time to put on your detective cap. What is Ann’s behavior trying to tell us? What might George do to help Ann?

  • There is a consistent pattern related to time of day. Mid-afternoon is difficult for Ann. We need to think about possible reasons for this.
  • Ann may be feeling alone and insecure. She wants George’s attention. George does not understand that Ann’s behavior is a symptom of how she is feeling. He is finding her behavior so stressful that he reacts by yelling, which only escalates Ann’s anger and agitation. It may help George to know that agitation and anger are caused by the disease, and that Ann is not able to control her behavior. George might try planning an enjoyable activity that Ann can do, such as washing dishes, looking at a photo album, or dusting. Going for a drive or taking a walk before mid-afternoon when Ann’s agitation usually begins may help. It is often easier to prevent a behavior by changing a routine rather than respond to the behavior once it has begun.
  • The TV might have upset her. On one occasion the TV was on. Was she watching something she might have misunderstood or misinterpreted? Could she be confusing TV with reality? News programs that report violence or disturbing events, action or ‘thriller’ shows may be difficult for Ann and causing her distress.
  • Her sugar craving may be increasing her agitation. As the brain changes, people with dementia may crave more sweets. Although by locking up sweets, George is doing what he thinks is best for Ann, giving her an afternoon snack of yogurt, fruit or a cup of cocoa may help reduce her cravings and her agitation.
  • Ann may simply be hungry. She has not eaten much for breakfast or lunch. Starting the day with toast, eggs or cereal or something with less sugar may sustain Ann longer. A larger lunch might help too. George could document whether eating larger meals affects Ann’s level of agitation in the afternoon. Or he could try giving Ann a snack a couple hours after breakfast rather than waiting 3 or more hours.
  • What beverages is Ann drinking? We know she has coffee with breakfast and tea with lunch. George could try decaffeinated coffee or tea or substitute another beverage for tea. Caffeine can make anxiety and agitation worse.

Part two of Becoming a Dementia Detective covers other possible strategies, but our takeaway here is:  A log that helps you track behavior is the first step to understanding the behavior—and then finding ways to change things up that can head off or lessen the behavior. Good luck!

Beth Spencer and Laurie White