Frontal lobe dementia acting like children

If the person says or does socially and/or sexually inappropriate things such as:

• Making rude, suggestive, or sexually explicit comments
• Touching themselves or others inappropriately
• Exposing themselves or masturbating in front of others
• Cutting in line, driving aggressively, eating off another person’s plate
• Asking personal or awkward questions, or sharing private information

Remember that the behavior is due to the disease process; changes in the brain can impair the person’s ability to control their impulses or have awareness of other people’s feelings.

Stay calm and try to keep a sense of humor to help soften awkward social encounters. Forewarn family/friends of the person’s behaviors to better prepare them with what to expect and how to best respond to the situation.

Avoid situations that may trigger the behavior, such as crowded or busy public places. Carry "awareness cards" with you as a discrete way to let others know that your companion’s behavior is caused by a brain disorder.

Keep car keys (and sometimes cars) out of sight/reach.

Use distraction; keep the person engaged in other activities to avoid impulsive responses to stimuli in the environment (videos or photos on your smartphone, snacks, objects to fidget with, a magazine or an activity).

Redirect the person to a private space where it they can be naked or masturbate.

Choose clothing that is difficult for the person to remove on their own, but is not restrictive (overalls, clothes with zippers or buttons in the back).

Be consistent with the person about what is okay and what is not okay.

If the person is disruptive or making you or someone else uncomfortable, make eye contact with the person and say, “Stop” with a calm but firm tone of voice, then suggest a different activity such as, “Hold this for me” (putting an object in their hand), “Help me…” (fold laundry, sort magazines, find something), “Let’s get a snack/put on some music/watch TV.”

If you think the person is seeking more physical affection or intimacy, consider pet therapy, a stuffed animal and socially appropriate touching like hand holding, dancing, back rubs or massages, manicure/pedicures or brushing/combing hair.

Talk with the person’s medical provider about any safety concerns related to the behavior. They may be able to report the person to the DMV, write a letter, prescribe medication or give you more ideas for reducing safety risks.

Perseverative or Compulsive Behavior

IF

THEN

If the person repeats a specific task or activity such as:

• Checking locks, doors, window coverings over and over
• Having rigid walking patterns, including pacing
• Collecting or hoarding items
• Counting or organizing objects repeatedly
• Going to the toilet frequently
• Selective eating habits

Remember that this behavior is due to the disease process; the person is not doing this to purposely annoy you and may not have any control over it.

Consider if the behavior is really a problem; if it does not cause any safety risks you might avoid conflict by learning to accommodate it.

Consider if the person might have a need that they are not able to express, such as boredom, hunger, insecurity or needing to use the toilet.

Sometimes people engage in repetitive behavior because they feel anxious, and the repetitive activity is soothing. Consider other ways to help address anxiety.

See if there is a way to substitute the behavior with other activities such as exercise, helping with simple tasks (folding laundry, sweeping, wiping down countertops) or creative projects (drawing, stringing beads, making a collage).

Remove or hide objects in the environment that might trigger the behavior. For example, hide ladders and tools in a secure location.

If the person is very rigid and resistant to any interference with their activity, be careful to avoid an aggressive reaction:

• Use a calm, matter-of-fact tone of voice. Try not to sound bossy or condescending.
• Try to distract the person with something appealing to them like a snack, music, or other favorite activity.

People with dementia often have problems sleeping and experience changes in their sleep patterns. Some of these changes are part of normal aging. Many of the changes in sleep patterns are caused by the impact of dementia on areas of the brain that control sleep. Many people with dementia sleep more during the day and thus, can be more awake and active at night. They may also awaken more easily during the night. Some people have trouble telling the difference between night and day. These sleep problems often disrupt the caregiver’s sleep. Many caregivers also report that they sleep poorly because they are worried and anxious. Sleep disruption can be stressful and burdensome for family caregivers, and we encourage caregivers to reach out for help.

There are medical conditions that can affect sleep. Depression and anxiety can cause early morning awakening, trouble getting back to sleep and poor sleep quality. Restless legs syndrome is a disorder that causes unpleasant sensations in the legs causing the urge to move. Sleep apnea is a pattern of breathing that results in poor sleep quality. Acting out during sleep (for example, moving, hitting out, and vivid dreams) can disrupt normal sleep patterns. Illnesses, such as angina and congestive heart failure can affect one’s sleep patterns. Anyone experiencing these symptoms should consult their healthcare provider.

Figuring out the Cause(s)

It is important to try and figure out what may be causing the sleep problem. There may be multiple factors: the environment, the daily schedule, having a pet, the result of dementia, and/or the types of medications being taken. Figuring out the cause is an important step in deciding how to manage or treat the sleep disturbance.

Sometimes it is helpful to keep a log or diary to see if there is a pattern to the sleep problem(s). For example, one caregiver slept in her mother’s room and discovered there was a bright light coming from a street lamp and that the neighbor routinely started their noisy car early in the morning. Moving her mother to a quieter, darker bedroom helped them both get better sleep.

If you have insomnia, you may experience one or a combination of the following symptoms:

• Taking a long time (more than 30 to 45 minutes) to fall asleep
• Waking up several times each night
• Waking up early and being unable to get back to sleep
• Waking up feeling tired and not able to function well during the day

Managing & Treating Sleep Problems

There are drug and non-drug approaches to the treatment of sleep disruption. Most experts encourage the use of non-drug strategies. Sleep medications are associated with a greater chance of falls and other risk factors. The following are strategies that can be used for the person with dementia and the family caregiver.

Set the Right Environment

• Keep a regular schedule: go to bed and get up at the same time every day.
• Try to exercise daily but not within three hours of bedtime.
• Make sure the temperature in the bedroom is comfortable (not too hot and not too cold).
• Reduce liquid intake before bedtime.
• Try not to nap during the day; if you do nap, try to do so before 3 p.m. and try to keep the nap short (about 20 minutes).
• Keep the bedroom as dark and quiet as possible; use a nightlight if needed, but be aware that bright light disrupts sleep/wake patterns.
• Calm activities at the end of the day and before bedtime may help with sleep.
• Avoid violent movies or TV shows; strong content and images can be upsetting and can make it hard to relax.
• Be aware that changes in your environment, such as moving to a new home or having unexpected visitors can be disruptive and confusing for the person with dementia.
• Avoid alcohol and products that contain caffeine (tea, chocolate or soda) and nicotine; these can cause overstimulation and interfere with sleep.
• Have access to daylight for several hours a day; exposure to light improves day/night patterns.
• For the person with dementia, avoid keeping their daytime clothing in view at night; this may be a cue that it’s time to get up.

Medications for Sleep

• Always talk with your healthcare provider before using over-the-counter (OTC) sleep medicines; many of them can make confusion worse, and some common OTC medications (like Tylenol PM) contain Benadryl, which can actually worsen sleep and cause confusion in older adults.
• Ask your health care provider if any of the medication you currently take could be causing sleep disruption.
• If the person with dementia is taking a cholinesterase inhibitor (donepezil, rivastigmine or galantamine), avoid giving the medicine before bed; instead, give it in the morning.
• Be aware that medicines used to promote sleep carry risks for older adults and people with dementia, including imbalance and falls, fractures, and increased confusion.
• Consider whether using a sleeping medication is appropriate; selective serotonin reuptake inhibitors (SSRIs) are a commonly used type of medicine (i.e., trazodone).
• Any time you are prescribed a new medication, make sure to ask your healthcare provider about possible benefits and risks; ask about other treatment options that may be available.

Other Things to Consider

• Be sure to treat conditions that may be causing pain and discomfort; consider using an analgesic at bedtime if your health care provider agrees.
• Do not restrain a person with dementia to keep them in bed; this can create agitation and a desire to escape and can lead to a fall or injury.
• Consider installing security alarms on doors and windows if there is concern that the person with dementia might wander from the house during the night; knowing that you have an alarm system may help you get better sleep.
• Consider using a bedside commode if getting up to the bathroom is causing sleep disruption.
• If you think being hungry at night is a problem, have a light snack just before bed.
• Use the toilet right before bedtime to help prevent nighttime waking.
• Consider hiring help in the home during the nighttime hours to help you, as the caregiver, get some sleep.
• There is evidence that meditation and mindfulness promote good sleep.

Other Resources

• 6 Tips for Managing Sleep Problems in Alzheimer’s (NIA)
• A Good Night’s Sleep (NIA)
• Dementia and Sleep (Sleep Health Foundation)
• Good Sleep Habits (Sleep Health Foundation)

Wandering & the Risk of Getting Lost

Any person who has memory problems and is able to walk is at risk of wandering and getting lost. Wandering can happen at any time. Wandering may be triggered by an attraction to something in the environment such as a shiny doorknob or elevator buttons. Persons with dementia may also be responding to an impulse or need to “go somewhere” or “do something.” Sometimes a person may get lost because they are, or become, disoriented. Some people wander because they are confused or frightened. Wandering is not necessarily a problem unless the person is at risk of getting injured, being taken advantage of, or getting lost.

IF

THEN

Your loved one with dementia can get around by themselves

Prepare for the possibility that they may wander and get lost:

• Keep a recent, close-up photograph or video of the person in an accessible place, such as your wallet or cell phone.
• Inform family, friends, paid caregivers, and neighbors that the person is at risk for wandering and getting lost; ask that they keep an eye out for the person and alert you if they see them out and about on their own.
• Inform local public servants and business owners, such as the police, fire department, and store clerks, that the person is at risk for wandering and getting lost, and make sure they have your phone number
• Make a list of likely places where the person may wander in case you need to search for them (past jobs, former homes, places of worship, or favorite restaurants)
• Consider using an alarm, chime, or bell to alert you when the person is exiting a room or leaving home unattended
• Try to provide enough supervision to keep the person safe; consider hiring an in-home caregiver or companion or enrolling the person in a day program
• Try to keep the person engaged in a familiar routine each day, since unexpected changes and over- or under-stimulation can be a trigger for wandering
• Consider enrolling the person in the MedicAlert ® +Alzheimer’s Association Safe Return ® program at 1.800.625.3780
• Consider getting the person an ID bracelet or necklace with your contact information on it
• Consider using a GPS tracking device or smartphone application that uses satellite technology to locate missing persons carrying or wearing a sensor device (i.e., shoe insert, watch or anklet)

Your loved one is actively trying to leave, for example, to “go home” even though they are at home or “Go to work” even though they no longer work

Environmental Strategies:

• Hide environmental “exit cues” or “trigger items,” such as keys, shoes, jackets, hats, and purses.
• Simplify the environment; reduce clutter, crowding, and background noise. Some television programs can be distressing.
• Try placing a large “DO NOT ENTER” sign on exit doors.
• Camouflage exit doors by painting them the same color as the walls or covering them with a removable curtain or screen.
• Cover knobs with cloth the same color as the door or use childproof knobs.
• Do not lock a person with dementia in the home or in a car unattended.
• Do not try to physically restrain a person with dementia unless you are attempting to protect them or others from immediate harm (such as getting hit by oncoming traffic).

Communication Strategies:

• Avoid trying to convince the person that they are already home or that they no longer work. This will lead to an argument and make the person more insistent about what they believe to be true.
• Try to go along with what the person is saying and guide them to something else without letting them realize they are being redirected.
• Remember to be calm and reassuring instead of controlling.
• Try making an emotional connection with the person in that moment.
• Use communication that is supportive and focused on distraction, for example:
  • “What was it like growing up in your house?”
  • “What is your favorite room in the house?”
  • “We can leave after lunch. Can you help me set the table?”
  • “I love you. This is hard. We are going to get through this together.”

  The person tries to leave because they are frightened and agitated

  • Stay calm. Consider calling a neighbor or friend to be on standby in case you need help.
  • Avoid running after them or trying to hold them back unless there are obvious hazards, such as traffic or harsh weather. Chasing after them may make the situation more dangerous.
  • Follow the person from a distance to give them personal space. Try to redirect their train of thought in a gentle manner. Some people will respond to verbal redirection, such as pointing out the weather or some other observation of the present moment:
    • “It sure is gray and cold out today. Would you join me for some hot cocoa?”
    • “Look at those cherry blossoms – how lovely! What is your favorite flower?”

    Your loved one seems bored or restless

    • Encourage exercise to help reduce anxiety, agitation, and restlessness. Go for a walk, rock in a bench swing, toss a beach ball, dance, or participate in group exercises.
    • Find moments of connection (try using their favorite music, a reassuring touch, reminiscing, storytelling, humor, pets, gardening, or conversation).
    • Try going outside to experience a change in scenery (get a snack or an ice cream cone, visit a pet store, museum, or mall, or take a scenic drive).

    If your loved one is missing and you cannot find them

    • Call 911 and let them know that a “vulnerable adult” with dementia is missing.
    • If you are enrolled, call MedicAlert®+Alzheimer’s Association Safe Return® program at 1.800.625.3780.
    • Write down what the person was wearing.
    • Call someone to help you (family, friend, or neighbor) walk or drive around the block or the immediate area. If possible, have somebody stay at home so that they can answer the telephone and be there in case the person returns.
    • Have the person’s most recent photo and medical information ready for the police.
    • Gather your list of places that the person may wander – past jobs, former homes, places of worship, restaurants, or bars.
    • Check dangerous areas near the home, such as bodies of water, open stairwells, dense foliage, tunnels, bus stops, and roads with heavy traffic.

    Resources

    • Wandering and Alzheimer's Disease
    • Wandering (Alzheimer's Association)

    Technology

    There is a lot of interest and hope that technology will provide safeguards against the risk of wandering and getting lost. Most products and services have not been studied to see if they are effective. We try to stay up-to-date on what is available but cannot endorse any of the devices or services below.

    Smart Phone Applications

    • Find My iPhone is a free feature for iPhones
    • Life360is a free application for patients who always carry a smartphone. It uses GPS technology and communicates with other smartphones.

    Tracking Devices

    • GPS Smartsole (The Alzheimer's Store) or at GPS Smartsole (MetALert): check the price for device, activation, and any monthly monitoring fee
    • S911 Lola S Personal GPS Tracker: $185/device and monthly service fee from $50–200/mo, includes extra features like a panic alert button, in/out of fence alert, shock alert, etc. Up to 30 hours of battery life.
    • Trackimo: $139.99 with the first 12-month subscription included, $5/mo after that. A compact GPS tracking device that enables you to track anything from anywhere using your smartphone or computer. Six days of battery life (standby mode)