Behavioral Challenges

Strategy: Try Validation and Redirection
Managing various behaviors during the course of Alzheimer’s disease can be challenging, but there are ways to improve the odds that an individual with dementia will respond positively while minimizing your own stress. One approach is Validation—a technique that confirms a person’s right to feel a certain way regardless of the situation. By validating the person’s experience, you are meeting the person where he or she is and sending a message of acceptance. Another approach is redirection—a behavioral intervention that shifts the individual’s focus, by distracting the person or moving away from an undesired topic or behavior to something more pleasant.

  • When your mother says, “I want to go home!” Instead of saying, “This is your home! You’ve only lived here for 30 years!” Try saying, “Of course you want to go home! Your house was the prettiest on the block. Why don’t you tell me about those tulips you planted in your front yard?” Why? When someone wants to go “home,” it really signals a desire for a sense of safety and familiarity. Bring mom “home” by reuniting her with her favorite memories of what home represents.
  • When your wife says, “Get away from me, you’re not my husband!” Instead of saying, “But I am your husband! Look at our matching wedding rings. You know, you really upset me when you don’t remember who I am.” Try saying “You must love your husband very much. I can tell by the way you talk about him. Why don’t you tell me about your wedding day?” Why? Memory loss can cause individuals to forget even their closest loved ones. When your wife becomes agitated, respect her space, validate the love she feels for her spouse, and allow her to talk about “him” while you are sitting right beside her. 
  • When your father refuses to eat and says, “You’re trying to poison me.” Instead of saying, “That’s ridiculous! Eat your meal and stop making up crazy stories!” Try saying, “Dad, I understand if you are feeling afraid, but I want you to know that I would never let anything bad happen to you. By the way, this meatloaf is delicious. Let’s have some together and you can tell me all about the fishing trip.” Why? It is difficult, if not impossible, to rationalize with people with dementia. Instead of trying to orient Dad back to reality, instill a sense of safety, and demonstrate it by eating the same meal as him or taking a bite from his plate.
  • When your sister says, “You stole my money! Give it back!” Instead of saying, “I’m sick and tired of you accusing me every time you hide your money. You stuffed it in your drawer five minutes ago.” Try saying, “Oh no, your money is missing? I can see why you’re upset. Well, don’t you worry because I am going to help you look for it.” Why? It is common for people with dementia to hide items and forget where they are moments later. Since it can be embarrassing to admit this, individuals sometimes accuse others to take the focus off themselves. Rather than trying to deflect blame, simply let your sister know that you understand how she feels and that you want to help her resolve the situation. Then walk her over to the drawer and ask her to open it. When your sister finds her money, allow her to take pride in finding it all by herself.
  • When your grandmother says, “I have to leave now. I need to pick up Jimmy from school.” Instead of saying, “Grandma, Jimmy is a grown man. He’s 60 years old. You’re not going anywhere.” Try saying, “Oh Grandma, you have always been such a loving mother to Jimmy. Why don’t you come with me to get a drink of water and tell me all about what you love to do with Jimmy after school?” Why? People with Alzheimer’s disease often live in the past by re-creating experiences that happened long ago. Despite the fact that Grandma hasn’t picked Jimmy up from school in decades, her maternal instinct is still very strong and she feels an urgency to follow the same routine from earlier years. Take this as an opportunity to reunite your grandmother with those happy memories; by distracting her, she will forget about leaving.

FAQ (to AFA’s social services team)
FAQ: Abusive

Q. My loved one is abusive, throws things and curses at me all the time. How do I handle this behavior?

A. People with Alzheimer’s disease tend to experience confusion and disorientation, which can influence their perception of reality. If their judgment is impaired, they may have trouble distinguishing right from wrong, and it’s not uncommon for them to take their aggression out on even the closest family members. Their confusion can appear in many ways, such as attacking caregivers because they no longer recognize them or negatively associate them with someone from the past.

First and foremost, you should discuss this behavior with the person’s primary care physician. There may be a treatable medical problem, such as a urinary tract infection or dehydration, which could be worsening the symptoms of Alzheimer’s disease and contributing to aggression.

Cursing and throwing things are common ways for people with Alzheimer’s disease to express their agitation. While your initial response may be to yell and try to get to the bottom of this behavior, the truth is that people with Alzheimer’s disease may not be able to express why they are upset. Often times, it is because of this inability to express their feelings or discomfort that they become aggressive in the first place.

If your loved one becomes physically dangerous or violent, your first priority should be to assure the person’s safety and your own safety. The key to doing so is to remain calm while providing reassurance. One way to do this is by speaking to your loved one, eye to eye, in a soft tone and reminding the person that you are there to help.

FAQ: Sundowning

Q. How do I handle sundowning syndrome?

A. Many individuals with Alzheimer’s disease experience increased confusion and agitation in the late afternoon and early evening—a symptom known as sundowning. Most sundowning emerges in the middle stages of the disease and slowly worsens as the disease progresses. Like with other behavioral challenges you may face as a caregiver, it often helps to make changes to the environment, daily routines and the ways you interact with your loved one. Although it is unlikely that any one technique will reverse or completely fix the situation, it is important to carefully consider all options and customize interventions to the specific person and situation.

Concerning the environment, watch for “triggers” that seem to further confuse, frustrate or agitate the person with dementia. For example, excess stimuli and clutter might aggravate sundowning. In addition, it helps to increase indoor lighting before dusk.

Tune in to daily routines that may be causing moments of failure or confusion. It may help to keep your loved one awake during the day, do only simple, calming activities in the afternoon, and make sure the person is well-fed and well-hydrated.

Lastly, in terms of interacting with your loved one, pay special attention to your use of certain words and phrases, body language and tone. Set the tone by modeling the mood and behavior that is appropriate for the situation. Stay calm, offer support and remain focused on positive themes—even if your loved one has a shift toward an unpleasant mood.

FAQ: Sexual Intimacy

Q. How does Alzheimer’s disease affect someone’s sexual experiences?

A. There is no across-the board answer to this question. The way Alzheimer’s disease and related illnesses affects a person’s sexual life can vary, based on such factors as someone’s past sexual history and the stage of the disease.

In the milder stages of dementia, many individuals who were sexually active  in the past remain active and continue to enjoy the experience. For others, emotional distress may lead to sexual withdrawal and feelings of inadequacy, or resentment and anger because of sexual difficulties.

As a partner, you can encourage your loved one to discuss his or feelings, emphasize the value of your relationship with or without sexual relations, and, if desired, seek professional counseling.

Later on in the disease process, some individuals with dementia may forget how to make love, may become less considerate of a partner’s needs, and may exhibit inappropriate and aggressive sexual behavior, such as exposing private parts. They may forget that you’ve just engaged in sexual activities and demand more relations, which can lead to anger if denied.

In general, it will be up to you to redefine sexual intimacy and adjust to the physical and emotional changes in your relationship.  Even when sexual intimacy is not possible, individuals with dementia need the safety, touch, comfort and security that come from being with a person they trust.

In rarer instances, people with dementia exhibit sexually aggressive behaviors, such as fondling, or at¬tempting or having intercourse with others. These acts of sexual disinhibition result from brain damage, especially in the frontal and temporal lobes of the brain, that has disrupted the individual’s ability to control responses or can be a reaction to unmet needs.

To avoid putting you, your loved one and others at risk, it is important to discuss these issues with a healthcare professional and identify the causes and options for treatment and behavioral interventions.