In this article we outline a number of behaviors that are common in dementia as well as how to address them. Being prepared to address certain behavioral changes and symptoms of dementia is extremely beneficial to the overall health and well-being of both the caregiver and person with dementia. Behaviors that may seem confusing or unexplained are common in individuals with dementia but often overlooked as symptoms can vary throughout individuals. This article will help you understand some common behaviors that occur with dementia and tips for how caregivers can respond.
- Resistance to Bathing
- Sexual Inappropriateness
- Speech Problems
- Hearing Loss
- Vision Problems
- Anger, Aggression, Agitation
It is increasingly common these days to turn on the radio or television and hear a “Silver Alert” for a missing older adult. Reportedly, six out of ten persons with dementia will wander. Of all the common dementia behaviors, Wandering can be one of the most frightening and dangerous. Individuals with dementia can become confused and can easily get lost when they wander outside of the home, even when they have spent many years in the same home. If your loved one is no longer safe to be out alone, the first thing to do is to “escape proof” the home. No matter how attentive you are, no one can have eyes on someone 24 hours a day. Locks, window and door monitors, security cameras and even baby monitors can help you feel more secure about the safety of your loved one at night.
Why do people with dementia tend to wander? Wanderers often have a purpose to their divergence. This is often due to their decline in memory and potential feelings of confusion, abandonment, or disorientation. Like other Alzheimer’s behaviors, look for the underlying cause and see if you can determine what makes your loved one want to leave. Your loved one might think they need to get to an appointment, pick the children up, go to work, or complete a different task. They might request to “go home” when they are currently in a house they have resided in for several decades, leaving the caregiver in the dark about what to do. However, there are several things you can do to reduce the risk of wandering – and understanding their motivations can help.
Both caregivers and individuals with dementia may be lacking in sleep. If there is anything that caregivers don’t get enough of, it’s sleep. People with dementia may also experience changes in their sleep schedule or have difficulty with sleeping as a symptom of the disease. Sleep changes seem to result from the disease’s impact on the brain, but the specific causes are unknown. Consequently, if the one you are caring for is waking constantly and spending long amounts of time awake in bed, there are a few things you can do before resorting to medication.
- Maintain a regular schedule of awake and sleep times.
- Limit daytime naps.
- Take your loved one outdoors on a regular basis and try to add a walk into that time.
- Eliminate alcohol and anything with caffeine, including soda.
- Make his or her bedroom restful and noise-free.
- Identify any potential sources of pain or medications that cause wakefulness.
One Caregiver’s Solution:
Ted’s wakefulness developed into a regular habit of leaving his bed and going into his wife’s room. He would then stand over her, nudge her, and ask “Doris, are you awake?” Of course, she wasn’t. Then Ted would be back with the same question 5 minutes later. Frustrated, one night she jokingly said “Yes, but I am in the middle of vacuuming. Go back to bed and I’ll get you when I am done” Ted turned around and went back to his room. From that point on, every night she would be either washing dishes, sometimes ironing; or even tap dancing. This worked, and they both got relatively good sleep.
Eating either too much or too little can be a major problem when one has Alzheimer’s or another type of dementia. There are many negative consequences of poor nutrition, including weight loss, irritability, sleeplessness, bladder or bowel problems, and disorientation. If a loved one is suddenly losing weight, it could be due to a number of reasons, including:
- Medications (these can affect the appetite and/or change taste)
- Taste and smell functions that often decline as we age
- Visual impairments
- Someone else is cooking, and it is not to their liking
- Inability to manage utensils
- Inability to find snacks left for them
- Dental problems may be affecting their ability to chew
- Lack of exercise
Tips for Caregivers:
- Develop a sense of humor and some flexibility regarding meals; if Mom suddenly only wants to eat oatmeal for several meals a day, let her. Jazz it up with some fruit, crumble up bacon, add a little protein drink–try something new each day.
- People with Alzheimer’s eat more when they are at the table with others. Take a break and eat your lunch with your loved one.
- Eliminate meal time stress: keep the noise level down, shutting off the washer, dryer, and TV.
- Expect accidents and messiness–that’s what paper towels and napkins are for.
- Have healthier snacks available and visible.
- If weight loss is a problem, provide nutritious high-calorie snacks.
- Serve food that is familiar and easy to eat.
Another common and difficult behavior exhibited by people with dementia is resistance to bathing. In general, people with dementia can sometimes have difficulty remembering to maintain good hygiene, such as brushing their teeth, toileting, bathing, and changing their clothes. These are very private and personal activities and to be undressed and bathed by another person can make someone feel embarrassed or humiliated, sometimes even frightened. Thus, bathing time can often be stressful for both caregivers and their loved ones.
As the caregiver, you should investigate some of the reasons they are resistant and see if you can help. Does the person feel unsafe? Are they able to see and comprehend the actual depth of the water? Have they been shown the safeguards and grab bars? Is the water too hot or too cold? Are they uncomfortable being in a hospital or getting undressed in front of strangers?
There are ways to make people with Alzheimer’s feel more comfortable when bathing. Involve them in the process of “getting things ready for a bath.” Picking out shampoos or wrapping a warm towel around their shoulders and sitting for a while is a non-threatening method that can ease the way when it is bath time. Attempt to find out their preferences—bath or shower, early in the morning or just before bed, etc. If it’s your loved one, try to remember their routine and preferences. If they have always been modest, you can make them feel more comfortable by closing the door and curtains and keeping a towel over his or her front and lifting only when needed. Some people may respond well to “spa time” with soft music, “mood” lighting and nice bath products. You might also try doing a “dry run” in the tub or shower on the bath seat partially clothed with only a damp face cloth, maybe some moisturizer, but no running water. Remember, it also may not be necessary to bathe everyday. However, when bathing time does arise, there are many steps you can take to ease the process.
Incontinence, or the loss of bladder or bowel control, is one of the most difficult situations to deal with that most people with dementia will develop by their later stages. The first step in mitigating the problem starts with the physician by making sure there is no physical cause for the incontinence such as a medication reaction. Urinary Tract Infections (UTI) are often unrecognized in persons with dementia, as they may be in pain but unable to verbalize what is happening. A sudden dramatic change in mental status is often a sign of a UTI and should be reported to the doctor immediately.
If the person still manages to use the bathroom some of the time, certain strategies can improve their success rate:
- Remain calm and reassure them when they do have accidents.
- Provide clothing that is easy to remove (elastic instead of buttons or zippers).
- Make the bathroom easy to find and use (open doors, good lighting).
- Ensure that they can they safely get to the toilet, especially at night (bed height, walking distance, or furniture impediments may create difficulties).
- Reduce fluids but only right before bed (manage your loved one or patient’s hydration carefully, for persons with Alzheimer’s don’t always recognize thirst).
- Establish a consistent bathroom schedule (every two hours, or after each meal).
Eventually it may become healthier for the person with Alzheimer’s and less work for the caregiver if incontinence products are used. They make commodes that can be left in the bedroom at night for easier access. Incontinence pads and products can also be purchased at any pharmacy or supermarket. Urologists may also be able to prescribe a special product or treatment. Most importantly, remember that incontinence issues can be extremely embarrassing and frustrating for the person with dementia, even in the later stages of the disease. Understanding and reassurance from the caregiver can help preserve their dignity and support their well-being.
Constant repetition of words (perseveration) or other redundant behaviors can be irritating for both the caregiver and person with dementia. Individuals with dementia often repeat the same actions or verbiage because they cannot remember details or events, for instance if they rearranged the bureau or told you that the mailman was coming. The person is often merely trying to seek or impart some information but is unable to do so. Due to memory damage and cognitive impairment, there is sometimes an important thought within them that gets stuck. While this behavior is usually harmless, it can be frustrating for caregivers. Sometimes repetitive behaviors can be triggered by anxiety, fear, boredom, or other factors in the environment.
Strategies to reduce repetitive speech or actions:
- Reassure them, provide comfort, and be patient.
- Try not to remind them, or yell at them, that they just asked you the same question. You might try refocusing their efforts on something else.
- Try diverting their attention with a snack or new activity.
- Don’t discuss plans with them until right before the event, to avoid further confusion.
- Try using reminders around the house, such as notes that say the time of dinner or other events they might wonder about.
- Pay attention and recognize common repetitive behaviors – they could be trying to communicate an important need (e.g. needing to use the bathroom).
As short-term memories disappear, individuals with Alzheimer’s often revert back in time to memories from childhood. As toddlers, we learn that certain words or phrases should never be used or mentioned in public situations. In individuals with Alzheimer’s and other forms of dementia, their social inhibitions and awareness tend to diminish. This can lead to inappropriate exclamations or unexplained expletives that people can take offense to. These behaviors may be especially common in frontotemporal dementia. It is important to recognize that a person with dementia may not be aware of their inappropriate behavior, and to apologize on their behalf to anyone who may have taken offense. Some Alzheimer’s organizations distribute cards you can have with you that say “My loved one has dementia” or something along those lines to discreetly let others know there is a reason for their inappropriate behavior.
A side effect of memory decline or cognitive impairment can often lead to older adults mistaking people for others, acting out of character, or believing they are someone else completely. Sexual inappropriateness can be a side effect of these delusions, and it is necessary to recognize that their behavior is not voluntary but rather due to a lack of inhibition from their dementia. A loved one may unknowingly take part in sexually inappropriate or lewd acts as their dementia progresses and inhibits their social perceptions. It is essential to watch out for signs of this behavior, and help diffuse situations that encourage sexual inappropriateness.
Problems with communication can be stressful for both the person with dementia and caregiver. It can be difficult to respond to someone who may not be able to fully communicate, or remind oneself to refrain from correcting a person with dementia on speech or linguistic faults. Due to their type or stage of dementia, the person may not be able to comprehend general language or realize that their own speech may be incomprehensible. As Alzheimer’s progresses, individuals may form less coherent sentences, more fragmented thoughts, and eventually produce what sounds like “word salad.” Caregivers should be patient, try to decipher what they can, and gently attempt to get the person to expand on what they are trying to communicate. Constant requests to correct themselves or communicate differently can frustrate individuals with dementia. Especially in the early stages of the disease, they are often aware of these language challenges, which can be extremely upsetting to them. Be patient, supportive, and understanding. They may use strategies like circumlocution, or using several words to describe the word they couldn’t recall, and you should actively listen and try to understand what they are saying.
While hearing loss is common with age, people with dementia are often examined by audiologists without success because their constant exclamation of “What?” is most likely due to a lack of comprehension rather than hearing disability. In the beginning of the disease process, people frequently miss one or two words out of four. As they further decline, they eventually reach a point where they understand one word out of four, which may confuse others in the conversation because the one word that is understood is usually taken out of context or used in a way that is unintelligible.
Tips for Caregivers:
- Short, simple sentences work best. Do not make multiple-part requests. “Sit down and give me your foot so we can get your socks on” can be too complicated for a person with dementia. Make each step a separate request.
- Not all of our communication is verbal. Facial expressions, tone, and body language may influence your loved one’s response even when you think you are doing a good job covering your frustration. Body language and other visual cues are often the most effective method of communication.
Another point to remember is that our vision declines as part of the aging process. Persons with Alzheimer’s or another type of dementia are often dealing with the lost “connection” that a normal brain makes when a person “sees“ an object and their brain identifies it, and this difficulty increases as the disease progresses.
Someone with Alzheimer’s disease has less peripheral vision, poor depth perception, and worsened ability to detect movement. The loss of color identification can create identification issues. For example, a white tile kitchen floor may suddenly frighten a loved one if they walk in and see “ice.” This inability to correctly identify objects can often lead to the assumption that the person is hallucinating. Try to be as aware as possible of potential environmental factors that might be difficult for them to visually discern. Failing depth perception can lead to a variety of challenges. When a person is walking, he or she may not be able to tell when, for example, the floor changes from carpet to tile. Or if the tile or carpet is patterned, this can cause added disorientation, which can lead to falls. A shadow or small dark rug on the floor can also look like a hole in the ground, which can be very frightening. Do your best to put yourself in their shoes, and look at the home environment through their eyes. Learn from their experiences (e.g. trips or falls) and alter the environment accordingly.
Anger, aggression, and agitation can leave Alzheimer’s caregivers bewildered and frustrated, especially if the behavior is new to their loved one. The agitated behavior can be repetitive, making them appear restless. Often these types of problems get worse as dementia progresses, from mild to more severe. Agitation and aggression may be triggered by several factors, including environmental factors, fear, or fatigue. Most often, agitation is triggered when the person with dementia feels like control is being taken from him or her.
These behaviors are also frequently attempts to communicate issues such as pain, hunger, or fear. Caregivers should investigate and inquire as to what might be the trigger that sets off the behavior. Concentrate on why a behavior is happening, not how you feel being on the receiving end. Try to be compassionate through your words and body language.
Tips for Reducing Agitation and Aggression:
- Comfort them; remind them that you are there with them.
- Make sure you don’t react negatively or show your frustration; they may not know the reason behind their behavior.
- Do something positive for and with your loved one: a cup of tea, or even a hand massage. A moisturizer such as almond oil has a pleasant smell, calms, and accommodates two senses: touch and smell.
- Acknowledge their frustration or anger over loss of control.
- Reduce caffeine intake, sugar, and other foods that spike energy levels.
- Try to distract them with a snack or activity.
- Reduce noise, clutter, or the number of people in the room.
- Keep dangerous objects out of reach.
While verbal aggression can be tolerated, physical aggression should never be ignored. Make sure you protect yourself and/or others who could be harmed. Remove items that could be used as weapons. Call your physician immediately and, if it’s an emergency, call 911 for help. It is sometimes necessary to have an individual hospitalized if aggressive behavior is consistent or dangerous. However, if it’s not dangerous or overly aggressive, restraining them will likely only increase their anxiety.
As stated before, individuals with dementia may reside in their own realm of reality. They might compensate for gaps in their memory with false stories that only make sense to them. Because of their false beliefs (delusions), it is not unusual for them to become paranoid. They may believe that you are poisoning them, keeping them captive, or may not even be who you say you are. While a natural reaction might be to tell them that they are wrong, that is not always the best reaction. Do not take offense, do not argue, and let them tell you what they are thinking. No matter how incredulous their story may be, acknowledge what they are saying without judgment in a simple, straightforward way. Remember, what they are experiencing is real to them. Try not to take these paranoid delusions personally.
People in the later stages of dementia may have hallucinatiions. Hallucinations are the perception of something that doesn’t exist. They may hear voices, or see things that are not there, or they may be convinced of an odor undetected by anyone else. Some hallucinations can be frightening, and others might involve ordinary visions of people, objects, or experiences from their past. Declining vision, limited depth perception, and the misinterpretation of a color can be frightening and contribute to hallucinations. Patterns and designs can be disorienting and distorted perception can cause confusion, for example leading someone to bump into an object and insist it was a person. Medications and pain may also be a cause.
Tips for Caregivers:
Discovering the cause of a hallucination takes time and patience, but the results can be better than an immediate fix, especially if that fix is medication.
- Do not argue or deny what they are seeing, hearing, or smelling.
- Acknowledge their feelings.
- Offer them comfort and help calm them (“Don’t worry I’m here, I won’t let anything happen to you”).
- Identify yourself, acknowledge their struggles, and then distract them while physically moving them to another location.
- Take a few minutes and investigate. What are they really seeing or hearing? Do they fear the glass safety barrier because they can’t see it? Do they think they are standing on a cliff instead of the second floor balcony? Does the coat rack look like a person?
- Cover mirrors with a cloth or remove them if the person thinks they see a stranger.
- Finally, if the hallucinations appear suddenly and are not relenting, call the physician, as this can also be a sign of a medical problem such as a urinary tract infection.
A Caregiver’s Story
Many years ago, I convinced a geriatric psychiatrist to occasionally accompany me when I made home visits to clients we shared. Edith was a charming 90- year old with mild cognitive impairment who was being treated for depression. At the time, she was managing her disease in her Berkeley apartment with supportive services such as Meals on Wheels, and transportation and visits from church members. Her medication was adjusted after she reported a problem with sleep. She started complaining about a man outside, watching her every night. During our visit, Dr. T and I both walked in the bedroom, opened the blinds, and looked out through the canvas awning only to find the view blocked by a large tree. There was no place someone could actually look in. While we didn’t comment, she was perceptive enough to realize our disbelief and dropped down onto her bed, frustrated. I sat down next to her, and we chatted while Dr. T was in the kitchen. I turned toward the window and stopped short. I immediately had the doctor come in and sit down and suggested he look out of one of the small uncovered windows above the blinds. Through that view one could clearly see that the fraternity porch had an “appropriated” Ronald McDonald (wearing a negligee, no less) standing on the roof above the lighted doorway. There was no doubt that after getting in bed at night, and without her glasses, she could see him.
Providing care for someone with dementia is a challenging role. Some of the most difficult aspects of caring for a loved one with dementia are the personality and behavior changes that often occur with the disease. No one is perfect, but you can do your best to cope with these challenges by being creative, flexible, patient, and compassionate. Though it can be hard, especially if you are a family caregiver, try not to take difficult behaviors personally, as they are often symptoms of the disease. Remember that all behavior occurs for some reason, and all you can do is your best to figure out why and how to respond. Remember that an approach that is effective today may not work tomorrow, as the disease progresses with time. And most importantly, remember that you are not alone – there are many others caring for people with dementia and dealing with the same troublesome behaviors and challenges. Resources, like chat or support groups, for others dealing with similar experiences can be extremely helpful.