Hallucinations, Delusions, and Paranoia Related to Dementia

(AgingCare.com) According to the Alzheimer’s Foundation of America, the major psychiatric symptoms of middle stage Alzheimer’s disease and other forms of dementia include hallucinations, delusions and paranoia. About 40 percent of dementia patients experience delusions, while hallucinations occur in about 25 percent of cases. When a senior is experiencing hallucinations and delusions, their caregiver often wants to help them understand that these beliefs and experiences are not real.

“It is not helpful to argue or rationally explain why something happened,” says Lisa P. Gwyther, associate professor in the Department of Psychiatry and Behavioral Sciences at Duke University and director of the Duke Aging Center Family Support Program.

“It just frustrates the person. They somehow know that you are not taking their thoughts and feelings seriously.”

While reinforcing reality seems like the logical and kind thing to do, this natural instinct can be wrong. Family caregivers can ensure they’re prepared to handle these challenging behaviors by learning the differences between them and proper coping techniques for each one.

Understanding the Differences

Hallucinations, delusions and paranoia are symptoms of disease and not a normal part of aging. While they may seem similar, they are actually very different.

Hallucinations are false sensory experiences that can be visual, auditory and/or tactile. These perceptions cannot be corrected by telling a patient that they’re not real. Examples include a dementia patient hearing music when none is playing or seeing bugs on a surface where there aren’t any.

Delusions are fixed false beliefs that are not supported by reality. They are often caused by a faulty memory. Examples include accusing caregivers of theft and infidelity.

Paranoia is centered around suspiciousness. Elderly individuals often project hostility and frustration onto caregivers through paranoid behaviors.

Coping with Hallucinations

When it comes to handling a senior’s hallucinations, Dr. Marion Somers, author of “Elder Care Made Easier: Doctor Marion’s 10 Steps to Help You Care for an Aging Loved One,” suggests joining them in their version of reality. Ask them about what they are experiencing as if it is real so that you can more effectively defuse the situation. Refrain from trying to explain that what they are seeing or hearing is all in their head.

“Otherwise, you’re going to aggravate them, and you don’t want to increase the level of agitation,” says Dr. Somers.

Reassure them by validating their feelings. Say something like,

“I see that you’re upset. I would be upset if I saw those things, too.”

Tell them that they are safe with you and you will do whatever you can to help them feel secure.

A comforting touch, such as gently patting their back, may help the person turn their attention to you and reduce the hallucination, according to the Alzheimer’s Association. You also can suggest that they move to a different room or take a walk to get away from whatever may have triggered the experience.

Realize that some hallucinations, such as seeing children or hearing music, can be comforting. If the individual is reassured by a hallucination, caregivers don’t need to do anything to stop it, Gwyther says. “You only need to respond to things that are scary or disruptive or keep the person from getting adequate care,” she says.

In addition to dementia, poor eyesight, hearing loss, certain medications, and physical problems like dehydration and urinary tract infections (UTIs) can contribute to hallucinations. If all other factors are ruled out and a loved one’s hallucinations are disturbing and persistent, then antipsychotic medication may be prescribed to reduce them. However, Gwyther says these medications can present a risk for dementia patients. She recommends first changing the way you communicate during these episodes and changing the activity and environment to remove or reduce triggers.

The Alzheimer’s Association offers these tips to change the environment:

  • See if any lighting or lack of lighting casts shadows, distortions or reflections on walls, floors and even furniture that could contribute to visual hallucinations.
  • Listen for any sounds, such as TV or air conditioning noise, which could be misinterpreted.
  • Remove or cover mirrors if they could cause someone to think they are seeing a stranger.

Dealing with Delusions

Delusions among dementia patients typically result from their cognitive impairment. They occur when a senior tries to make sense of a situation, but their confusion and memory problems make it impossible.

“They end up filling a hole in a faulty memory with a delusion that makes sense to them,” Gwyther says.

For example, if a loved one cannot find their purse, they may decide that it is missing because someone stole it.

Delusions can be frightening for the person living with dementia, but they can also be very hurtful for caregivers when they are the accused. Recognize that the elderly individual is living in a world that doesn’t make sense to them and is likely scared. Do not take any accusations personally or respond with logical explanations. Instead, reassure the person and avoid asking questions that may cause more confusion. If they are looking for an item, tell them you will help them find it. In cases where a loved one regularly misplaces an item and becomes agitated over the loss, the Alzheimer’s Association recommends purchasing a duplicate of the item to quickly resolve the issue until the original is found.

Distraction is another strategy that dementia caregivers use in response to delusional thinking, but it may not work for every patient or every delusion. If a loved one is experiencing a mild delusion, offering a favorite snack or activity or asking them to tell you about an important experience in their life may be sufficient to redirect their attention. In cases where the person is very upset, reassurance may be the only viable option. Again, it is crucial to avoid rationalizing the situation and stress your commitment to their security and happiness.

Responding to Paranoia

Paranoia is less common than delusions and hallucinations but can still be very troubling. According to the Alzheimer’s Association, when paranoia occurs, caregivers can assess the problem by considering these questions:

  • What happened right before the person became suspicious?
  • Has something like this happened before?
  • Was it in the same room or at the same time of day?
  • Can this trigger be removed or altered to avoid eliciting suspicion?

If someone is experiencing paranoia, it is important to discuss their medications (prescription and over the counter drugs as well as vitamins) with their doctor.

“Sometimes medications interact with one another or the dosages are too large,” notes Somers.

“That can bring on paranoia, but a doctor can address problems and adjust the senior’s regimen to minimize issues.”

Recognizing the causes for all three behaviors and understanding what a loved one goes through while enduring hallucinations, delusions and paranoia can help you both keep calm and find solutions.

Citation

https://www.agingcare.com/articles/hallucinations-delusions-and-paranoia-151513.htm

By Lori Johnson

2017 AgingCare, LLC. All rights reserved.

 

Depression and Alzheimer’s Disease

(American Academy of Physicians) When doctors talk about depression, they mean the medical illness called major depression. Someone who has major depression has symptoms nearly every day, all day, for 2 weeks or longer. These symptoms can include:

  • feeling sad or numb
  • crying easily or for no reason
  • feeling slowed down
  • feeling restless and irritable
  • feeling worthless or guilty
  • trouble remembering, focusing, or making decisions
  • headaches, backaches, or digestive problems
  • unplanned weight loss or gain
  • sleeping too much or having problems sleeping
  • feeling tired all of the time
  • no interest or pleasure in things you used to enjoy, including sex
  • thoughts about death or suicide.

There is a minor form of depression that causes less severe symptoms. Both have the same causes and treatment. An older person who has depression may feel confused or have trouble understanding simple requests.

What is Alzheimer’s Disease?

Alzheimer’s disease is the most common type of dementia. Dementia is a group of symptoms that can be caused by brain damage. Alzheimer’s disease makes it hard for people to remember, learn, and communicate. These changes eventually make it hard for people to care for themselves. It may also cause changes in mood and personality.

Depression is very common among people who have Alzheimer’s disease. In many cases, they become depressed when they realize that their memory and ability to function are getting worse. Together, depression and Alzheimer’s can cause other symptoms. You may not want to go places or see people anymore. Your outlook and quality of life can suffer.

Path to Improved Health

It may be difficult for you to know if your family member is depressed. You can look for some of the typical signs of depression. Your loved one may become angry and agitated, or lost and confused. They may refuse help with personal care, such as getting dressed or taking medicines.

Alzheimer’s disease and depression have many symptoms that are alike. It can be hard to tell the difference between them. If you think that depression is a problem for your loved one who has Alzheimer’s disease, talk to their doctor.

Things to Consider

There are many things you can do to help someone who has Alzheimer’s disease and depression.

  • Create a pleasant environment. Include people and things that they are familiar with. This can brighten their spirit and help soothe any fear or anxiety.
  • Set realistic expectations of what they can do. Help them with tasks they can’t do alone. Do not expect so much that they become frustrated or upset.
  • Let them help with simple, enjoyable tasks. These could be preparing meals, gardening, or doing crafts.
  • Avoid loud noises, crowded places, or overstimulation. This may cause them to shrink down or act out.
  • Be positive. Frequent praise will help them—and you—feel better.

As the caregiver of a person who has Alzheimer’s disease, you must also take care of yourself. If you become too tired and frustrated, you will be less able to help. Ask for help from family, friends, and local community organizations. Respite care may be available from your local senior citizens’ group or a social services agency. This is short-term care that is given to a patient who has Alzheimer’s disease in order to provide relief for the caregiver. Look or ask the doctor for caregiver support groups.

Other people who are dealing with the same problems may have good ideas on how to cope. Adult day care centers may be helpful. They can give your family member a consistent environment and a chance to socialize. Most senior living facilities have programs specific for people who have Alzheimer’s.

When to See the Doctor

Contact your doctor if you recognize Alzheimer’s and/or depression symptoms in yourself or a loved one. They will help you and your family with treatment options. Currently, the American Academy of Family Physicians (AAFP) recommends that adults be screened for depression.

The doctor may prescribe medicine to treat some symptoms. Antidepressant medicines can be helpful. These medicines help improve emotional and mental symptoms. They also can help with eating and/or sleeping problems. Antidepressant medicines are not habit-forming.

Questions to Ask your Doctor

  • Do depression and Alzheimer’s disease run in families? Am I at risk?
  • What types of medicines treat depression and Alzheimer’s? Are there any side effects?
  • Will depression go away?
  • Are there any lifestyle changes that help improve the symptoms?
  • Can you recommend a support group for people who have these conditions, and their caregivers?

This information provides a general overview and may not apply to everyone. Talk to your family doctor to find out if this information applies to you and to get more information on this subject.

Citation

Depression and Alzheimer’s Disease

Resources

U.S. Department of Health and Human Services, Eldercare Locator

Last Updated:

This article was contributed by:

Copyright © American Academy of Family Physicians

 

Alzheimer’s Disease: Wandering and Getting Lost

(Alzheimer’s Association) Six in 10 people with dementia will wander. A person with Alzheimer’s may not remember his or her name or address, and can become disoriented, even in familiar places. Wandering among people with dementia is dangerous, but there are strategies and services to help prevent it.

Who is at Risk of Wandering?

Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. It’s important to plan ahead for this type of situation. Be on the lookout for the following warning signs:

  • Returns from a regular walk or drive later than usual
  • Forgets how to get to familiar places.
  • Talks about fulfilling former obligations, such as going to work
  • Tries or wants to “go home,” even when at home
  • Is restless, paces or makes repetitive movements
  • Has difficulty locating familiar places like the bathroom, bedroom or dining room
  • Asks the whereabouts of past friends and family
  • Acts as if doing a hobby or chore, but nothing gets done (e.g., moves around pots and dirt without actually planting anything)
  • Acts nervous or anxious in crowded areas, such as shopping malls or restaurants.

We Can Help

The Alzheimer’s Association offers programs designed to assist in the monitoring and return of those who wander. MedicAlert® + Alzheimer’s Association Safe Return® is a nationwide identification program designed to save lives by facilitating the safe return of those who wander.

Tips to Prevent Wandering

Wandering can happen, even if you are the most diligent of caregivers. Use the following strategies to help lower the chances:

  • Carry out daily activities.
    Having a routine can provide structure. Learn about creating a daily plan.
  • Identify the most likely times of day that wandering may occur.
    Plan activities at that time. Activities and exercise can reduce anxiety, agitation and restlessness.
  • Reassure the person if he or she feels lost, abandoned or disoriented.
    If the person with dementia wants to leave to “go home” or “go to work,” use communication focused on exploration and validation. Refrain from correcting the person. For example, “We are staying here tonight. We are safe and I’ll be with you. We can go home in the morning after a good night’s rest.”
  • Ensure all basic needs are met.
    Has the person gone to the bathroom? Is he or she thirsty or hungry?
  • Avoid busy places that are confusing and can cause disorientation.
    This could be a shopping malls, grocery stores or other busy venues.
  • Place locks out of the line of sight.
    Install either high or low on exterior doors, and consider placing slide bolts at the top or bottom.
  • Use devices that signal when a door or window is opened. This can be as simple as a bell placed above a door or as sophisticated as an electronic home alarm.
  • Provide supervision. Do not leave someone with dementia unsupervised in new or changed surroundings. Never lock a person in at home or leave him or her in a car alone.
  • Keep car keys out of sight. If the person is no longer driving, remove access to car keys — a person with dementia may not just wander by foot. The person may forget that he or she can no longer drive. If the person is still able to drive, consider using a GPS device to help if they get lost.

Make a Plan

The stress experienced by families and caregivers when a person with dementia wanders and becomes lost is significant. Have a plan in place beforehand, so you know what to do in case of an emergency.

  • Keep a list of people to call on for help. Have telephone numbers easily accessible.
  • Ask neighbors, friends and family to call if they see the person alone.
  • Keep a recent, close-up photo and updated medical information on hand to give to police.
  • Know your neighborhood. Pinpoint dangerous areas near the home, such as bodies of water, open stairwells, dense foliage, tunnels, bus stops and roads with heavy traffic.
  • Is the individual right or left-handed? Wandering generally follows the direction of the dominant hand.
  • Keep a list of places where the person may wander. This could include past jobs, former homes, places of worship or a restaurant.
  • Provide the person with ID jewelry. Enroll the person in MedicAlert®+ Alzheimer’s Association Safe Return®.
  • If the person does wander, search the immediate area for no more than 15 minutes. Call “911” and report to the police that a person with Alzheimer’s disease — a “vulnerable adult” — is missing. A Missing Report should be filed and the police will begin to search for the individual. In addition, a report should be filed with MedicAlert+ Alzheimer’s Association Safe Return at 1.800.625.3780. First responders are trained to check with MedicAlert+ Alzheimer’s Association Safe Return when they locate a missing person with dementia. You do not need to be enrolled in MedicAlert+ Alzheimer’s Association Safe Return in order to file a missing report.

When Someone with Dementia is Missing

Begin search-and-rescue efforts immediately. Ninety-four percent of people who wander are found within 1.5 miles of where they disappeared.

Citation

http://alz.org/care/alzheimers-dementia-wandering.asp?WT.mc_id=enews2017_10_03&utm_source=enews-aff-20&utm_medium=email&utm_campaign=enews-2017-10-03

Copyright © 2017  Alzheimer’s Association®. All rights reserved.

 

Traveling with Dementia

(Alzheimer’s Association) If a person has Alzheimer’s or other dementia, it doesn’t mean he or she can no longer participate in meaningful activities such as travel; but it does require planning to ensure safety and enjoyment for everyone.

Deciding to Travel

Whether taking a short trip to see friends and family or traveling a far distance for vacation, it’s important to consider the difficulties and benefits of travel for a person with dementia. In the early stages of dementia, a person may still enjoy traveling. As the disease progresses, travel may become too overwhelming.

When you take into account the needs, abilities, safety and preferences of the person with dementia, what’s the best mode of travel? Consider the following:

  • Go with the option that provides the most comfort and the least anxiety.
  • Stick with the familiar. Travel to known destinations that involve as few changes in daily routine as possible. Try to visit places that were familiar before the onset of dementia.
  • Keep in mind that there may come a time when traveling is too disorienting or stressful for the person with dementia.

Tips for a Safe Trip

  • Changes in environment can trigger wandering. Even for a person in the early stages, new environments may be more difficult to navigate. Keep the person safe by taking precautions, such as enrolling in MedicAlert® + Alzheimer’s Association Safe Return®Comfort Zone® or Comfort Zone Check-In®.
  • Have a bag of essentials with you at all times that includes medications, your travel itinerary, a comfortable change of clothes, water, snacks and activities.
  • Pack necessary medications, up-to-date medical information, a list of emergency contacts and photocopies of important legal documents.
  • Create an itinerary that includes details about each destination. Give copies to emergency contacts at home. Keep a copy of your itinerary with you at all times.
  • If you will be staying in a hotel, inform the staff ahead of time of your specific needs so they can be prepared to assist you.
  • Travel during the time of day that is best for the person with dementia.

If you will be at a location for an extended period of time, consider contacting the local Alzheimer’s Association for resources and support. Find a chapter anywhere in the United States.

Documents to Take with You When Traveling

  • Doctors’ names and contact information
  • A list of current medications and dosages
  • Phone numbers and addresses of the local police and fire departments, hospitals and poison control
  • A list of food or drug allergies
  • Copies of legal papers (living will, advanced directives, power of attorney, etc.)
  • Names and contact information of friends and family members to call in case of an emergency
  • Insurance information (policy number, member name)

Air Travel

Traveling in airports requires plenty of focus and attention. At times, the level of activity can be distracting, overwhelming or difficult to understand for someone with dementia. If you are traveling by plane, keep the following in mind:

  • Avoid scheduling flights that require tight connections. Ask about airport escort services that can help you get from place to place.
  • Inform the airline and airport medical service department ahead of time of your needs to make sure they can help you. Most airlines will work with you to accommodate special needs.
  • If appropriate, tell airport employees, screeners and in-flight crew members that you are traveling with someone who has dementia.
  • Even if walking is not difficult, consider requesting a wheelchair so that an airport employee is assigned to help you get from place to place.
  • Allow for extra time.

More Resources

Citation

http://www.alz.org/care/alzheimers-dementia-and-traveling.asp

Copyright © 2017  Alzheimer’s Association®. All rights reserved.

 

Tips for Managing Common Symptoms and Problems in Dementia Patients

(HelpGuide) As a caregiver for a loved one with Alzheimer’s or dementia, it can be extremely worrying to experience behavior problems such as wandering, aggressiveness, hallucinations, or sleeping and eating difficulties. Many behavior problems are made worse by a poor environment and an inability to deal with stress. By learning how to make changes in the caring atmosphere, you can increase the quality of life for both the patient and yourself.

Identify the Causes of Alzheimer’s or Dementia Behavior Problems

One of the major challenges of caring for a loved one with Alzheimer’s or dementia can be coping with the troubling behavior and personality changes that often occur. It’s important to remember that the person with dementia is not being deliberately difficult. Your loved one’s sense of reality may be different to yours, but it’s still very real to him or her. As a caregiver, you can’t change the person with dementia, but you can employ strategies to modify or better accommodate any problem behaviors. Both the environment you create at home and the way you communicate with your loved one can make a huge difference.

The patient’s behavior can often be a reaction to stress or a frustrated attempt to communicate. If you can establish why the patient is stressed or what is triggering any discomfort, you should be able to resolve the problem behavior with greater ease. Remember, the patient responds to your facial expression, tone of voice, and body language far more than the words you choose. Use eye contact, a smile, or reassuring touch to help convey your message and show your compassion. Try not to take problem behaviors personally and do your best to maintain your sense of humor.

While these caregiver tips are directed at those caring for Alzheimer’s patients, the same behavior problems are also common in other types of dementia.

Some ways to help identify the causes of problem behavior:

  • Try to put yourself in the person’s situation. Look at your loved one’s body language and imagine what he or she might be feeling and what they might be feeling or trying to express.
  • Ask yourself what happened just before the problem behavior started? Did something trigger the behavior? Try a different approach to see if that changes the reaction.
  • Are the patient’s needs being met? Is the patient hungry, thirsty, or in pain?
  • Does changing the environment or the atmosphere help to comfort the person?
  • How did you react to the problem behavior? Did your reaction help to soothe the patient or did it make the behavior worse?

Create a Calm and Soothing Environment

The environment and atmosphere you create while caregiving can play a large part in helping an Alzheimer’s patient feel calm and safe.

  • Modify the environment to reduce potential stressors that can create agitation and disorientation in the Alzheimer’s patient. These include loud or unidentifiable noises, shadowy lighting, mirrors or other reflecting surfaces, garish or highly contrasting colors, and patterned wallpaper.
  • Maintain calm within yourself. Getting anxious or upset in response to problem behavior can increase the patient’s stress or agitation. Respond to the emotion being communicated by the behavior, not the behavior itself. Try to remain flexible, patient, and relaxed. If you find yourself becoming anxious or losing control, take a time out to cool down.

Manage stress in an Alzheimer’s patient

Different stress-reducing techniques work better for some Alzheimer’s patients than others, so you may need to experiment to find the ones that best help your loved one.

  • Exercise is one of the best stress-relievers for both the Alzheimer’s patient and you, the caregiver. Consult with your loved one’s physician to make sure it’s safe to participate in light exercise. Regular walking, movement, or seated exercises can have a positive effect on many problem behaviors, such as aggression, wandering, and difficulty sleeping. Indoor shopping malls are vast walking opportunities protected from the weather. Or you may even consider singing and dancing.
  • Simple activities can be a way for the patient to reconnect with their earlier life. Someone who used to enjoy cooking, for example, may still gain pleasure from the simple chore of washing vegetables for dinner. Try to involve the person in as many productive daily activities as possible. Folding laundry, watering plants, or going for a drive in the country can all help to manage stress.
  • Remembering the past may also help soothe the Alzheimer’s patient. Even if your loved one can’t remember what happened a few minutes ago, he or she may still clearly recall things from decades ago. Try asking general questions about the person’s distant past.
  • Use calming music or play the person’s favorite type of music as a way to relax them when agitated. Music therapy can also help soothe the person during mealtimes and bath times, making the processes easier for both of you.
  • Interacting with other people is still important. While large groups of strangers may only increase stress levels for an Alzheimer’s patient, spending time with different people in one-on-one situations can help to increase physical and social activity.
  • Pets can provide a source of positive, nonverbal communication. The playful interaction and gentle touch from a well-trained, docile animal can help soothe an Alzheimer’s patient and decrease aggressive behavior. If you don’t have a pet of your own, see Resources section below for organizations that offer pet visits.

Take time to connect with the Alzheimer’s patient

Taking the time to really connect with the person you’re caring for can release hormones that boost the patient’s mood and reduce stress. And it can have the same effect on you, too.

Even if the person you’re caring for can no longer communicate verbally, it’s important to take a short time when you’re at your calmest to focus fully on him or her. Avoid all distractions—such as the TV, cell phone, and computer—make eye contact (if that’s possible), hold the person’s hand or stroke his or her cheek, and talk in a calm, reassuring tone of voice. When you connect in this way, you’ll both experience a process that lowers stress and supports well-being.

Managing Alzheimer’s Symptoms: Wandering

While wandering around the house may be irritating to you as the caregiver, it’s not necessarily unsafe for the patient. However, some wandering can be dangerous: going into areas of the house such as stairwells, decks, hot tubs, or swimming pools; leaving the house alone via a window or door; or leaving your yard or property.

Two characteristic precursors to wandering are restlessness and disorientation. An Alzheimer’s patient may exhibit signs of restlessness when hungry, thirsty, constipated, or in pain. They may also become disoriented, pace, or wander when bored, anxious or stressed due to an uncomfortable environment or lack of exercise. To address this you can:

  • Make time for regular physical exercise to reduce restlessness
  • Immediately redirect pacing or restless behavior into productive activity or exercise
  • Reassure the person if they appear disoriented
  • If wandering tends to occur at a particular time of day, distract the person at that time with another activity
  • Reduce noise levels and confusion. These can disorient the person. Turn off the TV or radio, close the curtains, or move the person to quieter surroundings.
  • Acclimate ahead of time if you move the patient to a new environment by making several visits
  • Consult the doctor if disorientation is becoming a problem. Disorientation can be a result of medication side effects, drug interactions, or over-medicating.

Practical ways to prevent wandering

You may be able to prevent wandering by:

  • Installing child-safety devices in your home to keep doors and windows secured
  • Hiding items like purses, shoes, or glasses that the person would always take with them if they left the house
  • Acquiring comfortable chairs that restrict movement, making it difficult for the patient to stand up without assistance

Planning for when the Alzheimer’s patient does wander

In case an Alzheimer’s patient in your care does wander, it’s a good idea to have a plan in place.

  • Notify neighbors and local police about the Alzheimer’s patient’s tendency to wander, and make sure they have your phone number.
  • Have your loved one wear an ID bracelet or ID labels in clothing. New digital devices using GPS or cellular technology can track the patient’s location if he or she wanders off.
  • If a police search becomes necessary, you’ll need a recent photo of the person’s face. Also keep on hand some unwashed clothing to help search-and-rescue dogs. (To do this properly, place the clothing in a plastic bag with plastic-gloved hands, and replace the clothing monthly.)
  • In the U.S., sign up for the Alzheimer’s Association’s Safe Return Program, an identification system to help rescue lost Alzheimer’s patients who have wandered away (see Resources section below).

How to find a missing Alzheimer’s patient

A person with dementia may not call out for help or answer your calls, and often won’t leave many physical cues. He or she may get trapped somewhere, leaving them at risk for dehydration and hypothermia.

  • Check dangerous areas near the home, such as bodies of water, dense foliage, tunnels, bus stops, high balconies, and heavily traveled roads.
  • Look within a one-mile radius of where the patient was before wandering.
  • Look within one hundred feet of a road, as most wanderers start out on roads and remain close by. Especially look carefully into bushes and ditches, as the person may have fallen or become trapped.
  • Search in the direction of the wanderer’s dominant hand. People usually travel first in their dominant direction.
  • Investigate familiar places, such as former residences or favorite spots. Often, wandering has a particular destination.
  • If you suspect that the person used a car or public transportation, you’ll need to consider likely places that are farther afield.

Managing Alzheimer’s Symptoms: Rummaging and Hiding Things

Caring for a patient who rummages around or hides things in the home is a challenge, but not an insurmountable one.

Protecting your property

  • Lock certain rooms or cabinets to protect their contents, and lock up all valuables.
  • Have mail delivered out of reach of the Alzheimer’s patient—perhaps to a post office box.
  • If items do disappear, learn the person’s preferred hiding places.
  • Restrict access to wastebaskets and trashcans, and check all wastebaskets before disposing of their contents in case objects have been hidden there.

Protecting Alzheimer’s patients from harming themselves

  • Remove or prevent access to unsafe substances, such as cleaning products, alcohol, firearms, power tools, sharp knives, and medications.
  • Prevent electrical accidents by blocking unused electrical outlets with childproofing devices. Hide stove knobs so the person can’t turn on the burners.
  • Lower the temperature on water heaters.
  • Designate a special drawer of items that the person can safely “play” with when keen to rummage.

Managing Alzheimer’s symptoms: Belligerence, Anger, or Aggressive Behavior

While creating a calm environment can have a large impact on managing the stress that often results in aggressive behavior, there are also some things you can do during an angry outburst.

  • Don’t confront the person or try to discuss the angry behavior. The person with dementia cannot reflect on unacceptable behavior and cannot learn to control it.
  • Do not initiate physical contact during the angry outburst. Often, physical contact triggers physical violence.
  • Let the person play out the aggression. Give him or her space to be angry alone. Just be sure that both you and the patient are safe.
  • Distract the person to a more pleasurable topic or activity.
  • Look for patterns in the aggression. Consider factors such as privacy, independence, boredom, pain, or fatigue. Avoid activities or topics that anger the person. To help find any patterns, you might keep a log of when the aggressive episodes occur. If the person gets angry when tasks are too difficult, break down tasks into smaller pieces.
  • Get help from others during the activities that anger the patient.
  • Don’t take the aggressiveness personally. It, too, is just part of the dementia.

Managing Alzheimer’s Symptoms: Hallucinations and Suspicion

Hallucinations can be the result of failing senses. Maintaining consistency and calmness in the environment can help reduce hallucinations. Also, violent movies or television can contribute to paranoia, so avoid letting the patient watch disturbing programs.

When hallucinations or illusions do occur:

  • Don’t argue about what is real and what is fantasy.
  • Respond to the emotional content of what the person is saying, rather than to the factual/fictional content.
  • Seek professional advice if you are concerned about this problem. Medications can sometimes help to reduce hallucinations.

Alzheimer’s and suspicion

Confusion and the loss of memory can also cause Alzheimer’s patients to become suspicious of those around them, sometimes accusing their caretakers of theft, betrayal, or some other improper behavior.

  • Offer a simple answer to any accusations, but don’t argue or try to convince them their suspicions are unfounded.
  • Distract the patient with another activity, such as going for a walk, or by changing the subject.
  • If suspicions of theft are focused on a particular object that is frequently mislaid, such as a wallet for example, try keeping a duplicate item on hand to quickly allay the patient’s fears.

Managing Alzheimer’s Symptoms: Sleep Problems

Brain disease often disrupts the sleep-wake cycle. Alzheimer’s patients may have wakefulness, disorientation, and confusion beginning at dusk and continuing throughout the night. This is called “sundowning.”

There are two aspects to sundowning. First, confusion, over-stimulation, and fatigue during the day may result in increased confusion, restlessness, and insecurity at night. And second, some Alzheimer’s patients have fear of the dark, perhaps because of the lack of familiar daytime noises and activity. The patient may seek out security and protection at night to alleviate this discomfort.

Ways to reduce nighttime restlessness

  • Improve sleep hygiene. Provide a comfortable bed, reduce noise and light, and play soothing music to help them get to sleep. If the person prefers to sleep in a chair or on the couch, make sure they can’t fall out while sleeping.
  • Keep a regular sleep schedule. Be consistent with the time for sleeping and keep the nighttime routine the same. For example, give the person a bath and some warm milk before bed.
  • Keep a night light on. Some people with dementia imagine things in the dark and become upset. Stuffed animals or a pet may also help soothe the patient and allow them to sleep.
  • Place a commode next to the bed for nighttime urination. Walking to the bathroom in the middle of the night may wake the person up too much, and then they can’t get back to sleep.
  • Increase physical activity during the day to help the person feel more tired at bedtime.
  • Monitor napping. If the person seems very fatigued during the day, a short rest in the afternoon can lead to a better night’s sleep. But keep naps short—too much daytime sleep can increase nighttime wakefulness.
  • Limit the patient’s caffeine, sugar, and junk food intake during the day.

Dealing with nighttime wakefulness and pacing

If the patient paces during the night, make sure that the primary daytime caregiver can sleep. This requires either a very safe room for the patient to pace in, or else another caregiver who takes over at night. You need your rest, too. Do not restrain the patient in bed, but consider a hospital bed with guardrails in the later stages of Alzheimer’s. If night wakefulness has gotten too hard for you to manage, consult with a doctor if you wish to try administering sleeping pills.

Bright Lights, Better Sleep?

Often, people who have dementia find it harder to respond to day and night transitions, which can make it difficult to get to sleep or stay asleep. A recent study found that adding daytime bright light exposure to the use of melatonin supplements improved sleeping patterns in dementia patients. They enjoyed longer uninterrupted sleep, fewer episodes of getting out of bed at night, and less agitated behavior.

Adapted with permission from A Guide to Alzheimer’s Disease, a special health report published by Harvard Health Publications.

Managing Alzheimer’s Symptoms: Eating Problems

Ensuring someone with Alzheimer’s eats and drinks enough can be a challenge for any caregiver. These tips may help:

  • Encourage exercise – Exercise can make a person feel hungrier: The hungrier the person feels, the more likely he or she is to eat.
  • Monitor medications – Some medications interfere with appetite. Others may cause dry mouth, so make sure that the patient gets enough liquids with food. Discuss eating problems with your loved one’s doctor to see if medication needs to change.
  • Make mealtimes pleasing to the patient – Add flowers to the table or play soothing music. Make the patient’s favorite food and serve it on dishes that contrast highly with food colors. Reduce distractions in the eating area. Also, avoid foods that are too hot or too cold, as these may be unpleasant to the patient.
  • Feed the patient like a baby – Try giving the patient little spoonfuls, and sing short, funny rhymes to get him or her to eat. Get the person to smile so that the mouth opens, and then slip a little food in. Provide finger foods and children’s sipper cups, as the person may have trouble using utensils and normal cups.
  • Monitor chewing and swallowing – Chewing and swallowing difficulties can develop as Alzheimer’s progresses. If necessary, give instructions on when to chew and when to swallow. Keep the person upright for 30 minutes after eating to avoid choking.
  • Transition into providing only puréed or soft foods – In the later stages of Alzheimer’s, the person can no longer swallow food and may choke on food. Swallowing problems can lead to pneumonia because the patient may inhale food or liquid into the lungs. Begin a liquids-only diet when the time is right.

Don’t Forget to Take Care of Yourself

Caregiving for a loved one with dementia can be extremely demanding and stressful. Each day can bring more challenges and higher levels of anxiety, often without any signs of appreciation from the person you’re taking care of. Unfortunately, when you’re stressed and fatigued, you lose the ability to remain calm and soothing, and the patient will inevitably pick up on those negative feelings. This in turn can add to the patient’s own levels of stress and increase their problem behavior.

Taking care of yourself and getting help and support is essential for both your well-being and your loved one’s quality of life. Respite care can provide a break to help you relieve stress and restore energy. Make use of any services available to you and don’t be afraid of asking for help from other family members. It can make all the difference to your success as a caregiver.

More Help for Alzheimer’s Behavior Management

Alzheimer’s Disease and Dementia Help Center: Educate yourself about Alzheimer’s disease and dementia and make important decisions early to help you feel more in control.

Memory loss

Caregiving support

Resources and References

Managing Alzheimer’s behavior problems

Dealing with Behavior Problems – Links to detailed materials on agitation/anxiety, aggressiveness/combativeness, delusions/paranoia, apathy/depression, screaming/vocalization, sexual behavior problems and sleep disorders. (Alzheimer’s Association)

Managing Agitation Behavior in Alzheimer’s Patients – Demented patients show a variety of different behavioral problems, including anger, agitation, depression, suspiciousness, paranoia, wandering, sexual inappropriateness, hallucinations, and delusions. (HealingWell.com)

The “Challenging Behaviors” Index – An A-Z directory of how to care for and respond to the difficult behaviors of a person with Alzheimer’s Disease or other dementia. (Alzheimer’s Outreach)

Caring for Someone with Dementia: Unusual Behaviour – Provides tips for dealing with unusual behaviors such as repetitive questions, phrases, or motions; following; calling out; lack of inhibition; laughing or crying uncontrollably; pacing; fidgeting; and suspiciousness. Links to articles on more common behaviors like wandering and aggressiveness. (Alzheimer’s Society of the UK)

Hands-On Skills for Caregivers – Gives practical, insightful tips for how to physically approach a difficult patient; how to talk to them respectfully; and how to get them to co-operate with you, both physically and mentally. (Family Caregiver Alliance/National Center on Caregiving)

The Dartmouth Memory Handbook – Digital copy of the 4th Edition edited by Robert B. Santulli, M.D, associate professor of psychiatry at the Geisel School of Medicine at Dartmouth. Includes chapters on dealing with behavior problems. (Caldwell Law)

Pet therapy for managing Alzheimer’s behavior problems

Animal Therapy Group Listing – Offers an international directory of organizations that offer assisted animal therapy. (Land of Pure Gold Foundation)

Management of home safety; safe return program

Home Safety Behavior-By-Behavior – Ways to make your home safe for the Alzheimer’s patient who wanders, who rummages or hides things, who hallucinates; tips for social occasions at home and for adjusting the home environment to compensate for failing senses. (ADEAR: Alzheimer’s Disease Education & Referral Center)

Safe Return Program – A nationwide U.S. program where you enroll the patient for help with wandering: includes identification products, a network of local chapters, a 24-hour emergency crisis line, and a photo database. (Alzheimer’s Association)

Citation

http://www.helpguide.org/articles/alzheimers-dementia/alzheimers-behavior-management.htm

Authors: Melinda Smith M.A., Doug Russell, L.C.S.W., and Monika White, Ph.D.

©Helpguide.org.

 

Forgetfulness: What’s Normal, What’s Not

(Keck Medicine of USC) How well do you remember what you did last week? Memory loss is not always a sign of aging. Learn when you need to be concerned.

Misplace your car keys? Forget someone’s name? Lapses in memory happen to all of us, and there are times when we wonder whether these slips are normal.

Helena Chang Chui, MD with the USC Memory and Aging Center at Keck Medicine of USC, is an internationally recognized Alzheimer’s disease expert who helped us understand typical forgetfulness and when it may signal a more serious problem such as dementia and more specifically, Alzheimer’s disease.

According to Dr. Chui, growing older brings on changes throughout the body, including the brain. Mild forgetfulness is part of these changes. In contrast,

“Alzheimer’s affects the memory areas of the brain,” explains Dr. Chui.

“Not being able to learn new information or remember what just happened is an early symptom.”

However, unless the signs are dramatic and persistent, you shouldn’t worry about Alzheimer’s or other memory-loss diseases. Following are several ways to tell the difference between normal forgetfulness and something more serious.

What’s Normal

  • Absent-mindedness. This usually occurs when you aren’t paying close attention to the activity at hand.
  • Occasionally forgetting where you placed things.
  • Forgetting facts over time. Like computers, our brains need to purge old data to make room for new.
  • A “tip of the tongue” memory slip that you remember later.
  • Utilizing reminders help you remember.
  • Despite memory lapses, if your personality and mood remain the same it’s a good indicator that it’s probably not something more serious.

Abnormal forgetting is more complex.

With dementia or Alzheimer’s disease a patient’s memory fails, but so do other abilities. The most obvious is a decline in self-care. Early signs of dementia are when memory loss affects work, hobbies and social activities.

“Over time, Alzheimer’s affects long-term memory, so the person keeps losing more and more of their old self,” said Dr. Chui.

“The last to go are the youngest memories, usually from childhood.”

What’s Not Normal

  • Frequent pauses to retrieve words or memories.
  • Forgetting recent events.
  • When loved ones notice memory loss before you do.
  • Mood swings and personality changes are also occurring.
  • Difficulty performing simple, routine tasks like paying bills and dressing.
  • Getting lost in familiar places.
  • Repeating the same conversation over and over.

At times, memory loss is related to lifestyle issues. You’ll know this is the cause when you change your routine or consult a doctor and your forgetfulness diminishes or goes away altogether.

Other Causes for Forgetfulness

  • Fatigue and lack of adequate sleep. Doctors know that REM deep sleep plays a key role in memory.
  • Nutritional Deficiencies. Vitamin B12 from foods like dairy products, fish and meat are essential for normal nerve function.
  • High Stress. If you have too much on your plate, you can become overwhelmed which will make it difficult to, remember all the tasks before you.
  • Depression.
  • A medical issue. Silent strokes that go undetected can change brain function and deplete memory. Interestingly, researchers have found that people with forgetfulness may be at a higher risk for stroke.
  • Medication. Some drugs list memory loss as a side effect. Metformin, a type 2 diabetes drug, is linked to memory loss, as well as some cholesterol drugs.

For more than 30 years, Keck Medicine of USC physicians and researchers have made major contributions to understanding Alzheimer’s disease, vascular brain injury and memory problems.

If you are in the Los Angeles area and interested in early detection or care for Alzheimer’s disease by the top specialists in the world, be sure to schedule an appointment by calling (800) USC-CARE (800-872-2273) or by visiting http://neuro.keckmedicine.org/request-an-appointment/.

Citation

Forgetfulness: What’s Normal, What’s Not

By Heidi Tyline King

© 2017 Keck Medicine of USC

Intimacy and Sexuality: Resources for Dementia Caregivers

(National Institute on Aging) Alzheimer’s disease and other dementias may cause changes in intimacy and sexual behavior that can be challenging for caregivers. Spouses and partners often must adjust their attitudes and actions to maintain physical and emotional intimacy. The resources on this list can help family and professional caregivers better understand and respond to sexual behaviors in people with dementia.

Some resources on this list are free; others must be purchased. To buy an item, please contact the publisher to confirm price and payment information. Many items are also available from traditional and online booksellers.

The items on this resource list are organized alphabetically in two categories:

  • For Family Caregivers
  • For Professional Caregivers

For Family Caregivers

Behavioral Challenges: Coping With… Inappropriate Sexual Behavior

This short article discusses some of the more troubling sexual behaviors that can occur as Alzheimer’s disease progresses—for example, sexually aggressive fondling, disrobing, and masturbation. Tips for caregiver responses are provided.

Published by the Alzheimer’s Foundation of America. Phone: 1-866-232-8484. Email: info@alzfdn.org. Free online access.

Changes in Intimacy and Sexuality: Alzheimer’s Caregiving Tips (2012, 2 p.)

Learn how Alzheimer’s disease can lead to changes in close relationships. This tip sheet offers advice for reassuring the person with Alzheimer’s and for helping caregivers address their own needs.

Published by the National Institute on Aging’s Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Changes in Sexuality and Intimacy (PDF, 57K) (2015, 2 p.)

This fact sheet explains how sexual feelings and behavior may change in a person at different stages of Alzheimer’s disease. It encourages caregivers to communicate with their partners and to take care of themselves while responding appropriately to the person’s behavior. Read a related Spanish tip sheet, Sexualidad (PDF, 65K).

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: info@alz.org. Free online access in English and Spanish.

Dementia: Emotional Changes (2014)

This fact sheet describes ways in which people with dementia may experience emotional changes, including changes in their sexual feelings and behavior. Tips for caregivers explain how to handle changes such as a loss of interest in sex or increased sexual demands. The fact sheet also suggests nonsexual ways of expressing intimacy.

Available from Better Health Channel, Melbourne, Australia. Free online access.

LGBT Caregiving: Frequently Asked Questions (2015)

This online article touches on issues of interest to lesbian, gay, bisexual, and transgender (LGBT) older adults and their caregivers. It discusses how to obtain long-term care and other services that are LGBT-friendly and what to do if you suspect an LGBT nursing home resident is mistreated.

Published by the Family Caregiver Alliance. Phone: 1-800-445-8106. Email: info@caregiver.org. Free online access.

Sex and Dementia(2012, 15 pages)

This brochure explains that physical intimacy can continue to be a source of mutual support and pleasure for couples affected by dementia, and that there is no single “normal” way of handling sexual difficulties. It describes possible changes in sexuality and ways caregivers may respond to stay close while preserving safety and avoiding frustration and embarrassment. Also covered are sex in residential care settings, capacity to consent to sexual relations, and what to do when abuse is suspected.

Published by the Alzheimer’s Society, London. E-mail: enquiries@alzheimers.org.uk. Free online access.

Sexuality and Dementia (2014)

This online article presents quotes from caregivers explaining ways to cope with emotional and physical relationship changes brought on by dementia. It describes the impact of a lost sexual relationship and how caregivers can make adjustments in nonverbal intimacy as their partners’ interests shift. It also discusses talking with a physician or other professional to help caregivers who are struggling with these changes.

Published by the Family Caregiver Alliance. Phone: 1-800-445-8106. Email: info@caregiver.org. Free online access.

Sexuality in Later Life (La sexualidad en la edad avanzada) (2013, 12 pages)

This fact sheet describes the physical changes that occur with normal aging and reviews some causes of sexual problems, including dementia. It also discusses the importance of safe sex, emotional factors and sexuality, and ways to keep an active sex life in later life.

Available from the National Institute on Aging Information Center. Call 1-800-222-2225/1-800-222-4225 (TTY) or e-mail niaic@nia.nih.gov. Free print and online access in English and Spanish.

For Professional Caregivers

Building Respect for LGBT Older Adults (online learning module)

Developed by the U.S. Administration for Community Living, this tool for long-term care and other aging-services professionals is an introduction to LGBT elders. Many issues, from staff training to legal compliance, are discussed. Module 4, in particular, offers training in long-term care issues, including nursing home residents’ rights to receive visitors, to be free of abuse, and to have privacy.

Available from the National Resource Center on LGBT Aging. Phone: 1-212-741-2247. Email: info@lgbtagingcenter.org Free online access.

Freedom of Sexual Expression: Dementia and Resident Rights in Long-Term Care Facilities (2002, 16-min. DVD)

This video, originally produced by the Hebrew Home for the Aged in Riverdale, NY, looks at sexuality and intimacy in long-term care settings. It tastefully shows sexual expressions and describes methods for allowing sexual expression while maintaining a comfortable environment for residents and staff. The video also offers strategies for dealing with inappropriate sexual behaviors.

Available from Terra Nova Films. Phone: 1-800-779-8491. Email: tnf@terranova.org. $169; $50 rental fee; on-demand pricing available.

Hebrew Home at Riverdale Sexual Expression Policy (revised 2013)

In 1995, the Hebrew Home at Riverdale, NY, authored the United States’ first sexual rights policy for older adults in healthcare settings. In 2013, this policy was updated and now covers much ground pertaining to Alzheimer’s and dementia, specifically in matters of sexuality and consent. The policy also spells out resident rights, as well as staff and organizational responsibilities. The guideline helps professionals assess consent to sexual activity.

Published by RiverSpring Health. Phone: 1-800-567-3646. Free online access.

More Than a Thousand Tomorrows (2003, 22-min. DVD)

This video explores the challenges that Alzheimer’s disease can bring to intimacy and sexuality in a spousal relationship. Everett and Betty Jordan look at the changes Alzheimer’s has caused in their intimate relationship. The video also portrays making the adjustment from intimate partner to caregiver and dealing with frustration over lack of sexual desire.

Available from Terra Nova Films. Phone: 1-800-779-8491. Email: tnf@terranova.org. $119; $55 rental fee.

Responding to Intimacy and Sexuality of Residents with Alzheimer’s Disease (PDF, 44K) (2006, 4 p.)

This article by dementia expert Daniel Kuhn provides a brief overview of sexual intimacy among nursing home residents. With an emphasis on resident rights, it touches on determining a resident’s level of competency and surrogate decision maker. It discusses the role of nursing home staff and management and what to do when family members object to a resident’s sexual activity.

Published by the Illinois Council on Long Term Care. Free online access.

Sexuality and Dementia: Compassionate and Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors (2013, 188 p.)

Geriatric neuropsychiatrist Dr. Douglas Wornell provides practical solutions to sexual behavior challenges in people with dementia. Geared toward administrators and staff at long-term care facilities, the guide tackles issues such as the role of medication and overmedication; ways to handle inappropriate behaviors that respect the person with dementia, loved ones, and caregivers; and ways to minimize legal risk and potential for injury. Personal stories show how couples have dealt with relationship and sexual changes.

Published by Demos Health Publishing. Phone: 1-212-683-0072. $17.95.

Sexuality and Long-Term Care: Understanding and Supporting the Needs of Older Adults (2012, 221 p.)

Gerontologist Gayle Appel Doll, director of the Center on Aging at Kansas State University, addresses the question of how long-term care facilities can balance individual resident rights against the needs and concerns of the community as a whole. The author addresses sexual identity in elders, including those with dementia (in Chapter 5), and presents case studies to illustrate potential issues in long-term care settings. Best care practices for supporting resident sexuality are validated by research.

Published by Health Professions Press. Phone: 1-888-337-8808. $39.99.

Sexuality in Long-Term Care: Sexual Advances Towards Staff (20-min. DVD)

A resident’s loss of inhibition may result in inappropriate verbal and physical advances, such as sexually explicit comments and touching or grabbing staff. In this DVD, Dr. Georgia Stevens, a specialist in disruptive behaviors and behavior management, leads an interactive discussion with nursing assistants at a long-term care facility. Staff members talk about their experiences and, with Dr. Steven’s guidance, identify ways to set boundaries and develop policies that protect staff.

Produced by MedSchool Maryland Productions; order through Createspace. Phone: 1-410-706-5497 or 1-866-356-2154. $150.

The Last Taboo: A Guide to Dementia, Sexuality, Intimacy and Sexual Behaviour in Care Homes (PDF, 631K) (2011, 56 p.)

This guide for managers and other employees of residential-care facilities uses detailed case studies to discuss how to handle new and ongoing relationships between residents, issues of consent, policy setting, and the importance of staff training. The legal and regulatory information is specific to the UK, but the rest of the guide is not. Includes a quiz and list of references.

Published by the International Longevity Centre-UK, London. Free online access.

Understanding Dementia Care and Sexuality in Residential Facilities (PDF, 397K) (2010, 31 p.)

Written in the context of person-centered care, this guide focuses on the rights of people with dementia who live in residential care. Although produced by an Australian nonprofit, most of the information is general enough to be helpful to long-term care managers and staff elsewhere. Realistic scenarios and thoughtful questions enliven this guide’s common-sense approach. Topics include consent and privacy, family relationships, and policy development.

Published by Alzheimer’s Australia. Free online access.

Articles

Alagiakrishnan K, Lim D, Brahim A, et al. Sexually inappropriate behaviour in demented elderly people. Postgraduate Medical Journal 2005;81(957):463-466.

Black B, Muralee S, Tampi RR. Inappropriate sexual behaviors in dementia. Journal of Geriatric Psychiatry and Neurology 2005;18(3):155-162.

Davies HD, Newkirk LA, Pitts CB, et al. The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. International Psychogeriatrics 2010:22(4):618-628.

De Medeiros, K, Rosenberg PB, Baker AS, et al. Improper sexual behaviors in elders with dementia living in residential care. Dementia and Geriatric Cognitive Disorders 2008;26(4):370-377.

Frankowski AC, Clark LJ. Sexuality and intimacy in assisted living: Residents’ perspectives and experiences. Sexuality Research and Social Policy 2009;6(4):25-37.

Guay DR. Inappropriate sexual behaviors in cognitively impaired older individuals. American Journal of Geriatric Pharmacotherapy 2008;6(5):269-288.

Ozkan B, Wilkins K, Muralee S, et al. Phamacotherapy for inapproprirate sexual behaviors in dementia: a systematic review of literature. American Journal of Alzheimer’s Disease & Other Dementias 2008;23(4):344-54.

Rosen T, Lachs MS, Pillemer K. Sexual aggression between residents in nursing homes: literature synthesis of an underrecognized problem. Journal of the American Geriatrics Society 2010;58(10):1970-1979.

Series H, Degano P. Hypersexuality in dementia. Advances in Psychiatric Treatment 2005;11(6):424-431.

Simonelli C, Tripoli F, Rossi R, et al. The influence of caregiver burden on sexual intimacy and marital satisfaction in couples with an Alzheimer’s spouse. International Journal of Clinical Practice 2008;62(1):47-52.

Svetlik D, Dooley K, Weiner M, et al. Declines in satisfaction with physical intimacy predict caregiver perceptions of overall relationship loss: a study of elderly caregiving spousal dyads. Sexuality and Disability 2005;23(2): 65-79.

Tenenbaum E. To be or to exist: standards for deciding whether dementia patients in nursing homes should engage in intimacy, sex, and adultery. Indiana Law Review 2009;42(3):675-720.

Tenenbaum E. Sexual expression and intimacy between nursing home residents with dementia: balancing the current interests and prior values of heterosexual and LGBT residents. Temple Political and Civil Rights Law Review 2012;459. Albany Law School Research Paper No. 13 for 2012-2013.

Tucker I. Management of inappropriate sexual behaviors in dementia: a literature review. International Psychogeriatrics 2010;22(5):683-692.

Wallace M, Safer M. Hypersexuality among cognitively impaired older adults. Geriatric Nursing 2009;30(4):230-237.

Ward R, Vass AA, Aggarwal N, et al. A kiss is still a kiss?: The construction of sexuality in dementia care. Dementia 2005;4(1):49-72.

Citation

https://www.nia.nih.gov/alzheimers/intimacy-and-sexuality-resources-dementia-caregivers

National Institute on Aging

 

See the Person, Not the Disease, with Alzheimer’s Caregiving

(Mayo Clinic with Angela Lunde) Last time, we spoke about wandering, a label we often attach to a person living with Alzheimer’s.

It’s natural to attach a label to something we don’t completely understand or like. Think of other labels we use and apply in the context of dementia.  We label a person as a way to explain their so called “behaviors” with words like: resistive, hoarder, screamer, pacer, or sundowner.

To identify the person, some may refer to them as a patient, sufferer or victim. We describe a place of residence as a unit, facility or memory wing.  We talk in terms of deficits and losses and may think about the person as child-like, incompetent, less-than or no longer there.

No wonder so much fear and stigma surround Alzheimer’s. The labels and words not only send a message to those who hear them, but they also reinforce stereotypes and perceptions in our own mind that then influence our attitudes and our behavior.

If we use the word patient in our everyday interactions when referring to people living with dementia, then we see a medical diagnosis before we see a person. We focus on the deficits without seeing a whole person.

Similarly, if we refer to people victims then we think of them as a victim and we react by treating them as if they’re helpless and without the capacity for quality living.

If we say someone has behaviors then we think of the person or their disease as the problem. When we assume a person is no longer capable based on a diagnosis, we start taking over. When we believe in our mind that a person with dementia is child-like it changes how we communicate with them.

A study published in the American Journal of Alzheimer’s and other Disorders demonstrated that “restiveness to cares” in those living in a nursing home was significantly higher when staff communicated using “elderspeak” as opposed to normal adult communication.

Elderspeak refers to infantilizing and patronizing communication, similar to baby talk. It includes simplified grammar and vocabulary, as well as overly intimate terms of endearment.

Because many folks living with dementia can’t effectively communicate their needs (concerns, grievances) verbally, they compensate with non-verbal communication. This often gets labeled as “resistive.”

Bottom line, they’re simply trying to communicate in the best way they can, and in this case, it’s the need to be treated as an adult —  further evidence that persons living with dementia know when they’re being treated with dignity and respect or not.

Every person living with dementia embodies a unique history along with personal values, preferences, strengths and abilities.

And although it can sometimes be difficult to always know what someone with dementia is capable of, and it can change from day to day, they can often do much more than we think.

Some of what contributes to “problem behaviors” in persons living with dementia is their need to contribute, to feel useful and to function independently

Sometimes all it takes is to break a task down into smaller steps, offer some cues to help them get started, and then allow a bit more time. Each of us has a basic need to be engaged in meaningful activities and in life.

There are justified explanations for why a person living with dementia behaves or reacts in a particular way. If we believe that everything has meaning behind it, then our relationship to the person living with dementia dramatically changes. We see a person, not a disease. And that person will tell you everything you need to know once you pay attention with your eyes, your ears, and most of all your whole heart.

Citation

http://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-blog/in-dementia-caregiving-avoid-labeling/bgp-20096344

By Angela Lunde