Tag Archive for: dementia behavior change

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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

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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

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