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


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. (

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)


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



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


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: 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: 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: 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: 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: 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: 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 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: 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: $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: $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.


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.


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.


By Angela Lunde



Alzheimer’s and Sleep Problems

( People with Alzheimer’s disease go through many changes, and sleep problems are often some of the most noticeable.

Most adults have changes in their sleep patterns as they age. But the problems are more severe and happen more often for people with Alzheimer’s.

You might notice that your loved one:

  • Sleeps a lot more than usual, including taking naps during the day. This is common for people in the early stages of the disease.
  • Has trouble falling asleep or wakes up a lot at night. When he does sleep, he might doze on and off.
  • Wants to sleep more during the day and stay awake at night. This becomes more common as Alzheimer’s gets worse.
  • Gets restless or agitated when the sun sets, a condition called sundowning. He might pace or wander during the night, too.

Scientists aren’t sure why people with Alzheimer’s tend to have problems sleeping. It may be because the disease damages the brain and changes the way it controls the sense of when to get shut-eye and when to be awake.

But even when sleep patterns change, you can make it easier for your loved one to rest and get some Zzz’s yourself.


Most doctors say it’s best to start with changes to lifestyle and behavior to fix sleep problems. There are medications that can aid sleep, but they can be harmful for people with Alzheimer’s, causing confusion and making them more likely to fall.

Here are some tips to get started:

  • Help your loved one keep a regular 24-hour schedule. Eat meals, wake up, and go to bed at the same time each day.
  • Discourage naps during the day, or at least limit them to 30 minutes.
  • Move him into sunlight soon after he wakes up and keep the lighting low as bedtime approaches. This helps set his internal clock closer to normal.
  • Make sure he exercises every day, although not within 4 hours of going to bed.
  • Encourage him to avoid nicotine, alcohol, caffeine, and large meals, especially at night.
  • Make sure his bedroom is comfortable, with the temperature not too warm and not too cold.
  • Check with your loved one’s doctor about other health conditions he might have that can cause sleep problems, such as restless leg syndrome, sleep apnea, or urinary tract infections. There may be treatments that can help.
  • Some Alzheimer’s drugs, like donepezil (Aricept), can cause trouble sleeping. If your loved one takes this medication, avoid giving it to him at night.

A mix of changes may help if one tactic doesn’t work.

Sleep Medications and Alzheimer’s

If your loved one’s doctor prescribes medicine to help him rest, he’ll probably start at the lowest dose possible and stop the drugs as soon as sleep patterns improve.

Medications include:

  • Sleeping pills such as zaleplon (Sonata) and zolpidem (Ambien)

Doctors also sometimes prescribe drugs called antipsychotics such as risperidone (Risperdal). They can be helpful, but they also might increase the risk of death in some people with dementia. You’ll want to talk carefully with your loved one’s doctor about this medicine before he takes it.

Just as Alzheimer’s sleep problems can change over the years, so do the ways you can handle it. Always talk to your doctor about which options are best.

How You Can Get Rest, Too

As a caregiver, it’s just as important for you to get enough shut-eye, so you can take better care of yourself and your loved one.

Many of the same things recommended for people with Alzheimer’s can work for you, too:

  • Keep a regular schedule.
  • Don’t smoke, and cut down on caffeine, alcohol, and large meals, especially at night.
  • Have a comfortable bedroom and use it only for sleeping.
  • If your loved one takes a short nap during the day, take the chance to lie down and rest as well.
  • Connect with other caregivers for support. You might feel better talking to others about your situation and hearing their advice.
  • Aim to get 7-9 hours of sleep a night.
  • Try to relax before you go to bed. Muscle relaxation exercises, writing in a journal, or soft music can help.

WebMD Medical Reference Reviewed by Richard Senelick, MD on June 22, 2015

© 2005 – 2017 WebMD, LLC. All rights reserved.


Alzheimer’s or Depression: Could it be Both?

(Mayo Clinic) Alzheimer’s and depression have some similar symptoms. Proper treatment improves quality of life.

Early Alzheimer’s disease and depression share many symptoms, so it can be difficult even for doctors to distinguish between the two disorders. And many people with Alzheimer’s also are depressed.

One important difference between Alzheimer’s and depression is in the effectiveness of treatment. While Alzheimer’s drugs can only slow the progression of cognitive decline, medications to treat depression can improve a person’s quality of life dramatically.

People who have both Alzheimer’s and depression may find it easier to cope with the changes caused by Alzheimer’s when they feel less depressed.

Similar Symptoms

Some of the symptoms common to both Alzheimer’s and depression include:

  • Loss of interest in once-enjoyable activities and hobbies
  • Social withdrawal
  • Memory problems
  • Sleeping too much or too little
  • Impaired concentration

With so much overlap in symptoms, it can be hard to distinguish between the two disorders, especially since they so often occur together. A thorough physical exam and psychological evaluation can be helpful in determining a diagnosis. However, many people with moderate to severe Alzheimer’s disease lack both the insight and the vocabulary to express how they feel.

Signposts for Depression

To detect depression in people who have Alzheimer’s disease, doctors must rely more heavily on nonverbal cues and caregiver reports than on self-reported symptoms. If a person with Alzheimer’s displays one of the first two symptoms in this list, along with at least two of the others within a two-week period, he or she may be depressed.

  • Significantly depressed mood — sad, hopeless, discouraged, tearful
  • Reduced pleasure in or response to social contacts and usual activities
  • Social isolation or withdrawal
  • Eating too much or too little
  • Sleeping too much or too little
  • Agitation or lethargy
  • Irritability
  • Fatigue or loss of energy
  • Feelings of worthlessness, hopelessness or inappropriate guilt
  • Recurrent thoughts of death or suicide

Alzheimer’s Disease with Depression is Different

People with Alzheimer’s may experience depression differently from that of people without Alzheimer’s. For example, individuals diagnosed with Alzheimer’s disease:

  • May have symptoms of depression that are less severe
  • May experience episodes of depression that don’t last as long or recur as often
  • Talk of suicide and attempt suicide less often

Scientists aren’t sure of the exact relationship between Alzheimer’s disease and depression. Some research has found that the biological changes caused by Alzheimer’s may intensify genetic predisposition to depression. Other studies suggest that the presence of depression may increase your chances of developing Alzheimer’s disease.

It’s clear that depression has a strong effect on quality of life for people with Alzheimer’s disease. Depression can lead to:

  • Faster cognitive decline
  • Earlier placement in nursing homes
  • Greater disability involving daily living skills
  • Increased dependence on caregivers

Treatment Options

Several options are available to treat people diagnosed with Alzheimer’s disease and depression:

  • Antidepressants. Selective serotonin reuptake inhibitors (SSRIs) — for example, citalopram (Celexa) and sertraline (Zoloft) — are the first line antidepressants used for people who have depression and Alzheimer’s because of the low risk of side effects and drug interactions. Other antidepressants, such as venlafaxine (Effexor, Effexor XR) or bupropion (Wellbutrin), also may be used.
  • Physical exercise. Regular physical exercise, particularly in the morning, seems to ease the symptoms of depression.
  • Support groups and counseling. Support groups and professional counseling may help people with depression in the early stages of Alzheimer’s disease, before their communication skills deteriorate.
  • Electroconvulsive therapy. Some people with depression and dementia don’t respond to other treatments. In many of these cases, electroconvulsive therapy can help relieve symptoms of severe depression. The procedure delivers electricity to the brain for a few seconds, to trigger a seizure. Electroconvulsive therapy is used more frequently for older people than for younger people — perhaps because older people may have more side effects from antidepressants or have more severe complications from severe depression.

Making the right diagnosis and getting appropriate treatment can help make life easier and more enjoyable for both the person with Alzheimer’s and his or her caregivers.


By Mayo Clinic Staff

© 1998-2017 Mayo Foundation for Medical Education and Research. All rights reserved.


Understanding Behavioral Changes in Dementia

(Lewy Body Dementia Association) Most people with dementia undergo behavioral changes during the course of the disease. They may become anxious or repeat the same question or activity over and over. The unpredictability of these changes can be stressful for caregivers. As the disease progresses, your loved one’s behavior may seem inappropriate, childlike or impulsive. Anticipating behavioral changes and understanding the causes can help you deal with them more effectively.

Click here to download a PDF of this document.

What is the behavior telling you?
Persons with dementia often lose their ability to express themselves before they lose their ability to understand. Behavior becomes a means of communication. Ask yourself why your loved one is behaving this way. Then you can take steps to manage the behavior.

Tips for managing behavioral changes
When your loved one exhibits an undesirable behavior, your reaction may be to try to stop or change the behavior. But remember, you can’t reason with or teach new skills to a person with dementia. Instead, try to decrease the intensity or frequency of the behavior. Consider these approaches:

  • Remember that your loved one isn’t acting this way on purpose. Try not to get angry or upset or take it personally.
  • Speak calmly and softly to the person.
  • If the behavior is aggressive, back away. Give your loved one space. Then calmly approach him or her. Don’t argue.
  • Consider the potential cause of the behavior. Is your loved one tired, hungry, in pain, frustrated, lonely, bored? Could it be a side effect of medication?
  • Respond to the emotion, not the behavior. If your loved one keeps asking about a certain family member, he or she may need reassurance that this person is healthy and safe. Avoid trying to reason with the patient, this may often lead to frustration for both of you, because he or she may be unable to follow lengthy explanations.

If a behavior continues, keep a journal to identify patterns (time of day and possible triggering events), and this may provide clues regarding ways to intervene.

Validate, Join and Distract
One effective method for managing a difficult or annoying behavior is to validate, join and distract. For example, if your loved one constantly heads to the door asking to go home, efforts to try to distract him may not work. By simply interrupting the behavior, you don’t gain an understanding of why the behavior is occurring.

A more effective approach is to try to validate the emotion that you think is underlying the behavior. For example, say something like, “I know you miss your family.” Then sit down and look through family photo albums. This way, you haven’t just distracted the person but you’ve first joined in and validated the person’s emotions. Validating, joining and then using distraction may be most effective with people who are in the early to middle stages of the disease.

You know your loved one best
Let your knowledge of your loved one who has dementia guide your choices for distractions. For example, if she was a homemaker, stirring cookie dough or folding laundry may be meaningful activities. Responding to challenging behaviors takes creative solutions, patience and a willingness to be flexible.


Although persons with dementia typically lose recent memory skills, habits are a part of a different memory structure in the brain that tends to remain intact longer. By sticking to the same routine, your loved one doesn’t have to stop and think about what to do next. The routine becomes automatic. Components of a routine may include eating breakfast before getting dressed, sitting in the same recliner in the living room each morning, attending elder care in the afternoon and taking a bath in the evening.

Although organizing your own day may take little conscious effort, giving structure to the day of a person with dementia may pose special challenges. Thinking for two takes sensitivity, ingenuity and patience.

Using routine as a tool
As a caregiver, you know your loved one’s daily rituals better than anyone else. And, you’re in a unique position to customize and refine your loved one’s routine so that it includes meaningful activities for as long as possible. These daily activities, which may seem insignificant, honor the life of your loved one and provide him or her with a sense of purpose.

Keep in mind that just because your loved one is changing doesn’t mean other things must change. Where objects are located in your home, and when and where routine activities happen can stay the same even as your loved one’s disease progresses.

Other aspects of daily life should remain the same and be strengthened. These may include:

  • Personal hygiene routines
  • Mealtime routines such as preparation, serving, eating and cleanup
  • Household chores such as doing laundry, sweeping and dusting

You can use each one of these activities to reinforce routine and capitalize on your loved one’s strengths and interests.

These daily tasks also take advantage of procedural or habit memory. By capitalizing on the memory your loved one retains the longest, namely habit memory, you can involve him or her in meaningful, purposeful activities for longer.

The progressive nature of LBD, Alzheimer’s, and other forms of dementia requires that you re-examine your routine frequently — especially if you notice your loved one is agitated, unsettled or depressed. There will come a time when you can’t sustain even basic routines. At this point, flexibility is important. Maybe your loved one used to read the paper each morning but no longer can read. He or she may still be able to hold the paper and turn the pages, and if this is an activity that he or she enjoys and is meaningful to them, then it should be allowed to continue.

It is important for caregivers to step down expectations as the disease advances. Routine is a tool. Because no two people respond the same to a routine, it’s up to caregivers to decide what works best for them and the loved ones in their care.

Here are some tips for maintaining a routine:

  • Identify the routine. Routine tasks are those performed on a daily basis. Dressing for the day or walking the dog are routine tasks. Taking an annual trip to a cabin with extended family is not, and your loved one may now find it unsettling.
  • Retain important rituals. Maybe your wife preferred to eat the evening meal at a television tray in the living room. By continuing this habit in the same environment, you may cue your wife to eat and serve as a bridge to positive memories.
  • Remove distractions and limit choices. This may mean narrowing the clothing choices in the closet, offering two possible outfits to wear (or asking if your loved one would care to wear one particular outfit). It also may mean relocating an item in the house that may otherwise cause your loved one to lose interest in the task at hand.
  • Recognize that change may be necessary. Maybe your husband always helped set the table. As the disease advances, you can continue this routine with some changes. Perhaps your husband can continue to just put the spoons on the table, or maybe he can hold the spoons for a while before you put them on the table yourself. Educate your family and friends about the disease. Too many people visiting at one time may overwhelm your loved one and upset your routine. Before your friends visit, give them communication tips, such as not asking your loved one too many questions. (See “The Importance of Maintaining a Support Network.”)
  • Stay flexible. You can’t schedule every activity and event in advance. When an unexpected or unforeseen change occurs in the routine, just restart your routine the next day.


As a person’s condition progresses, his or her ability to communicate diminishes. Understanding the effects of the disease will help you communicate as effectively as possible for as long as possible

Your loved one may:

  • Be unable to remember names, thoughts or memories
  • Use the wrong words or invent words
  • Mispronounce or repeat words
  • Have difficulty organizing thoughts
  • May be easily distracted
  • Use more nonverbal gesture
  • Lose ability to reason and understand
  • Use language that is more direct or accusatory
  • May become withdrawn and speak very little

Medications and other health problems also may affect communication. If you notice significant or abrupt changes in your loved one’s ability to communicate, talk to his or her physician.

Tips for better communication Although you may find these changes frustrating and even alarming, you can counter them. Consider using these tips to improve communication with your loved one:

  • Make the effort. When communicating becomes difficult, your first response may be to stop. Recognize that communicating effectively may take more time and energy. Making the effort will help you sustain this vital aspect of your relationship with your loved one as well as preserve your loved one’s dignity.
  • Try to understand. Rather than correcting mispronunciations or inaccurate statements, recognize that your loved one may no longer be able to consistently come up with the right words, or may have trouble comprehending what you’re saying. Be patient and use phrases such as “I’m sorry, could you repeat that?” or keep the flow of conversation going by providing the elusive word.
  • Speak slowly, calmly and quietly. This will allow the person time to process what you are saying. People with dementia often watch our non-verbal cues (facial expression, body language, tone of voice) to interpret what we are saying and may mirror our mood.
  • Avoid quizzing, testing or trying to teach the person to remember. These techniques won’t work and will only serve to embarrass and humiliate. Imagine the feelings associated with not being able to recall a child’s name during such a test. Instead of saying, “Do you know who this is?”, try “Here is your granddaughter Susan who has come to visit.”
  • Reassure and comfort. Do not reality orient. The person may be worried about the children, parents, going “home” even if living at home or going to work even if long retired. Trying to convince them of the truth is generally fruitless and can be frustrating or even frightening. Jump into their world and help to make it less frightening by providing lots of reassurance. For example, if your loved one is worried because the children are not home from school yet, provide an explanation that might be acceptable and reassuring such as, “the children are staying at a friends house tonight, they are having a nice time”. If your loved one does not recognize you, go along with it or try stepping out of the room and announce your identity upon your return.
  • Be aware of your nonverbal communication. Speak slowly, calmly and in a normal volume. People with dementia can be sensitive to changes in mood, voice, posture or facial expression. You can do wonders to ease tension by smiling at a frustrating moment. If you have difficulty understanding what your loved one is saying, listen for the feelings behind what he or she is trying to communicate and validate those feelings. For example, say, “I know that you’re frustrated right now” or “I’m glad you’re so happy today.”
  • Forgive yourself when you don’t always respond appropriately. You may find it difficult to communicate with as much understanding and patience as you’d like to. Keep in mind that because of the memory loss, your loved one is unlikely to remember everything you say.
  • Simplify your communication. Stand directly in front of your loved one and make eye contact. Communicate one idea at a time and use simple instructions. Try breaking even simple tasks into one-step commands. If you’re helping with a task, let your loved one know what you’re going to do next. If possible, demonstrate what you want your loved one to do — such as brushing teeth or putting on a jacket. If you must repeat things, try to use the same words. If your loved one doesn’t understand a second time, then try rewording. Avoid abstract concepts, which your loved one may find difficult to grasp. For example, phrases such as “jump into bed” can be confusing. Instead, use direct statements such as “it’s time to get into bed.”
  • Validate the feeling behind the words. Even if you are unable to understand what is being communicated, look at the non-verbal signs of emotion. Is she upset? Joyful? Afraid? Respond accordingly providing lots of affection and comfort.
  • Reminiscence can be very useful and validating. Persons with dementia usually retain their memories from long ago. Discussing these memories and prior accomplishments often provide a sense of security.
  • Do not try to argue or reason with the person. Their ability to reason is no longer there, and the person will not be able to remember your reasoning or rationally weigh your points. Do not argue with the person over what they see, hear or feel. If the person is seeing things you don’t see, reassure him and respond to his or her feelings about it. Remember that these ideas or hallucinations are very real to the person who is experiencing them. Rather, offer reassurance and validation (e.g., “I know this is troubling for you, let me see if I can help”).
  • Reduce clutter, extraneous noises or confusing aspects in the environment. Check out any real basis to the person’s fear. For example, the person may “hear people” in the next room because the TV is on.
  • If the person misplaced something and thinks you or someone else “stole it,” offer to help look for the item. Keep track of frequent hiding places, and if possible keep duplicates of the item.
  • Accept changes. Keep in mind that the changes you see and hear in your loved one are a result of the disease, not of your loved one trying to be difficult or hurtful. When your loved one says inappropriate things, remember it’s the disease talking. Try not to take it personally.

Even when your loved one no longer responds in the way he or she once did, your efforts to communicate will help to keep him or her engaged in life for as long as possible.


People with dementia are likely to walk or pace aimlessly at some point during the disease. This wandering behavior can occur both indoors and outdoors, and it may have several causes. It may be the result of memory loss and disorientation. It may be a sign of curiosity, restlessness or boredom. Or it may be an attempt to express an emotion, such as fear or loneliness, or basic need, such as hunger or thirst. Here are some tips to help cope with this challenge, determine which ones work best for you and adapt them to your specific situation.

To help reduce or manage your loved one’s tendency to wander:

  • Understand the disease process. People with dementia often have deteriorating communication skills. When language is gone, behaviors may be the only way your loved one can communicate. By wandering, your loved one may be trying to share feelings of fear, isolation, loneliness or confusion. Provide comfort with a hug and a reminder that he or she is safe and in the right place.
  • Make sure your loved one is getting enough food, drink, rest and opportunities to use the bathroom. If your loved one has trouble expressing wants, wandering may be the only way he or she can tell you that these basic needs aren’t being met.
  • Take a daily walk or engage in excercise with your loved one, if possible. This may reduce anxiety, agitation and restlessness and reduce the tendency to wander.
  • Allow your loved one to wander in safe areas, such as a fenced yard or looping set of hallways, with supervision. This can be a natural way to explore and adapt to surroundings.
  • Maintain a quiet environment. Wandering can occur when there’s too much stimulation, such as multiple conversations or a loud television.
  • Keep your loved one engaged in daily chores and activities. Restlessness and boredom can lead to wandering.
  • Make your living space safer by removing throw rugs, moving electrical cords and possibly rearranging furniture. Use night lights and install gates at stairwells in case your loved one wanders at night.
  • Install childproof doorknobs or latches mounted high on doors or post a stop sign on your home’s exit doors. This may deter outdoor wandering.
  • Keep a family photo album handy. Your loved one’s wandering may indicate a desire to look for family members or something familiar.
  • Post signs that say “Bathroom,” “Bedroom” and “Kitchen” on the corresponding doors in your home. Your loved one may forget where he or she is and may have difficulty finding these rooms without guidance.
  • Keep car keys out of sight. Wandering doesn’t always occur on foot.
  • If your loved one tries to leave the house, do not stop him. Forcefully trying to restrain a person set on leaving can result in injury and a catastrophic reaction (severe distress). Rather, go with him or her for a “walk”, go on an outing (even if it just for a drive around the block), or let them go and then follow them to ensure safety. Even if it is the middle of the night, the few minutes you go for a walk is better then the hours of distress (and possibly injury) associated with trying to stop a person with dementia from leaving
  • Enroll your loved one in the Alzheimer’s Association’s “Safe Return” program. This is a nationwide identification system designed to assist in the safe return of people who become lost when wandering. Caregivers pay about a $40.00 registration fee. In return, they receive an ID bracelet, name labels for clothing, ID cards for a wallet or a purse, registration in a national database with emergency contact information, access to a nationwide alert system and a 24-hour toll-free number for reporting lost persons. To register someone, contact a local chapter of the Alzheimer’s Association or call 800-272-3900.


When people with dementia become frustrated, scared or unable to communicate, they may become irritable or angry. Sometimes a person may experience a catastrophic reaction. This may occur in response to variety of occurrences including: loud noise (radio, TV, person), multiple questions, “why” questions, feeling insecure, feeling left out, small accidents, being reprimanded, arguments, a tense or irritable caregiver, or tasks that are too difficult. Try to see the situation from the patient’s point of view.

  • Make sure your loved one gets enough sleep. Fatigue can cause combativeness.
  • Reduce loud noises and physical clutter in your home. Loud noises and clutter can over stimulate your loved one. Limit guests to one or two at a time, and use television sparingly.
  • Don’t expect too much. Don’t try to teach new information or ask your loved one to perform tasks he or she has been unable to complete in the past. This only results in frustration.
  • Include exercise and light housekeeping chores in your loved one’s daily routine. This may reduce the restlessness that can lead to agitation and aggression.
  • Don’t argue with or quiz your loved one to test his or her memory. This can lead to agitation. If you need to ask your loved one questions, make them easy to understand and ask them one at a time.
  • Keep your loved one’s routine and environment consistent and simple. Changes — even small ones — can cause agitation. If you need to make changes, make them gradually.
  • Try to be pleasant. If you’re feeling angry, stressed, irritated or impatient, try not to let it show. Respond to your loved one in a calm, reassuring way. That doesn’t mean you should deny your feelings, however. Just try to deal with them at a later time, and it may be be a cue that it is time to obtain additional assistance, so you can have some respite from caregiving responsibilities.
  • If your loved one becomes frustrated, provide reassurance and distract him or her with another activity. After some time has elapsed, you can return to the original activity if necessary.
  • Don’t panic. If your loved one becomes agitated or aggressive, don’t resort to physical force. Try instead to soothe your loved one by holding hands, gently patting his or her back. Some people do not like to be touched when they are feeling agitated, and for those individuals it may be best to leave the room or to sit quietly a safe distance from him or her.
  • Consider the 5 “R”s in handling catastrophic reactions: Remain calm, respond to feelings, reassure the person, remove yourself, return later.
  • Check out the reality of a situation; maybe what the person says or thinks is true.
  • Remember that whispering or laughing around the person may be misinterpreted.
  • Consult a physician. Sometimes agitation is caused or aggravated by physical symptoms of pain, discomfort, physical illness or a co-occurring depression.


Exercise may not be high on your list of caregiving priorities. But you should consider it. There are many well-documented benefits of exercise for people who have dementia — benefits that also may make it easier for you to cope.

Benefits of exercise

Helping your loved one stay active may:

  • Improve strength, endurance and cadiovascular health
  • Reduce risk of falls and fractures
  • Improve energy, circulation, stamina and mood
  • Improve sleep
  • Promote regular bowel and bladder function
  • Help maintain flexibility and balance, reducing the risk of serious injury from falls
  • Help sustain the ability to perform self-care activities, such as grooming and dressing
  • Impart a sense of belonging, purpose and contribution
  • Create a calming effect through familiar activity

Getting started:

If you’re interested in making exercise part of your loved one’s daily routine, consider these tips:

  • Consult your loved one’s doctor first. Other medical conditions that your loved one may have, such as high blood pressure or heart disease, may affect the type of program you can establish.
  • Offer support and encouragement but not pressure. Pushing your loved one beyond what he or she is comfortable doing may cause frustration.
  • Go with the familiar. Plan safe, supervised activities your loved one has enjoyed in the past, such as walking, swimming, golf or tennis. These offer the best chances for success.
  • Exercise with your loved one. This may even help you manage the stress of caregiving.
  • Adapt activities to your particular situation. If your loved one was once an avid golfer, for example, hitting chip shots in the backyard still may provide enjoyment.
  • Establish a regular routine. Exercise at the same time each day, if possible, and keep the sequence of activities the same each time. If you and your loved one walk together, for example, use the same walking path each time to minimize confusion. When it rains, walk inside a mall or in your home.
  • Ask your loved one to follow your lead while exercising. Offer simple instructions or directions. Or use an exercise videotape as a guide for some light stretching or calisthenics.
  • Look to outside resources. If your loved one enjoys exercising with others, contact your local senior citizen’s center for information about group exercise programs.
  • Look for creative options. Walk outdoors and watch birds as you go, or dance to music that your loved one enjoys. If outdoor gardening is no longer an option, plant and tend an indoor container garden or take a walk in a local nursery.
  • Wear loose-fitting clothes and comfortable shoes. If you’re exercising outdoors in cool weather, wear layers of clothing appropriate to the temperature. This is especially important if your loved one has lost the judgment required to solve everyday problems, such as knowing what to do if he or she gets too cold.
  • Remember to warm up. Before any activity, walk for a few minutes and then do gentle stretching exercises for the upper and lower body.
  • Watch for changes in your loved one’s capacity for exercise. As dementia progresses, his or her capacity for exercise decreases. If you see this happening, cut back or try less strenuous activities so that your loved one can stay active as long as possible.
  • Never ignore comments about pain, dizziness or shortness of breath. Consult a doctor if your loved complains of these symptoms.

Keep it fun

When factoring exercise into your care giving goals, aim to help your loved one remain as independent as possible while providing exercise options that offer purpose, meaning, pleasure and fun. In the process, exercise may even enhance your relationship.


Nearly 90 percent of adults older than 65 who live at home have complaints about sleep. However, among people with dementia, the problem is even more severe. In fact, sleep problems are one reason people with dementia end up in nursing homes.

Stress, alcohol use, poor sleep habits, certain medications and an additional illness can all contribute to disturbed sleep among people with dementia, as can an underlying sleep disorder.

What is “sundowning”?

Many people with dementia experience periods of increased agitation, confusion and restlessness beginning at dusk and continuing through the night. This late-day phenomenon has sometimes been called sundowning. Nighttime agitation can make it impossible for the person under your care to get the sleep he or she needs to function well. How to cope To help prevent nighttime agitation in your loved one with dementia, try these tips:

  • Don’t serve your loved one alcohol. It contributes to confusion and can increase anxiety. If the person insists on having a drink, try serving a nonalcoholic drink in a familiar cocktail glass, or serve nonalcoholic beer or wine.
  • Limit caffeine-containing foods and beverages (sodas, coffee, chocolate) to mornings only. Consuming caffeine later in the day can cause sleeplessness.
  • Plan to go outside, or have your loved one sit near natural light. Exposure to sunlight helps to set the body’s internal clock and may also improve mood.
  • Plan days to include plenty of interesting activities. Involvement in daytime tasks, such as walks, car rides or exercise help to keep the day filled with meaningful activities. However, avoid overstimulation. This can lead to exhaustion and disorientation. Taper activities off as the day winds down.
  • Establish set times for getting up and going to bed. Try not to deviate from those times. If possible, set the same sleep and wake schedule the person maintained during his or her working years. If you feel your loved one is sleeping too late, wake him or her up earlier.
  • Limit daytime napping. If your loved one needs a nap, make sure it’s short and not too late in the day. Have him or her take the nap on the couch or in a recliner rather than in bed. Reserve the bed for nighttime sleep.
  • Feed your loved one a light snack before bed. If he or she awakens during the middle of the night, try warm milk or herbal tea.
  • Establish a bedtime routine of relaxing activities, such as listening to soft music or giving your loved one a backrub. Do the same things in the same way every night (including using the bathroom before bed). The structure and routine may be comforting to the person with dementia.
  • Avoid upsetting activities near bedtime. If bathing or dressing for bed is difficult, do it earlier in the day. Let your loved one use the couch or recliner if he or she refuses to go to bed.
  • Create a comfortable, familiar place for sleeping. Make sure the bedroom is cool and quiet. Have extra blankets available, if needed, especially a favorite blanket, pillow or soft object. Make sure that the person’s bed linens and pajamas aren’t too restrictive or full of uncomfortable wrinkles and folds. Use a night light in the room.
  • Make sure the bedroom is safety-proofed. Keep the area around the bed uncluttered, and make sure the path to the bathroom is clear and softly lit.
  • If your loved one has a tendency to act out his or her dreams, make sure there are no breakable objects nearby and check with your doctor about treatment.
  • If your loved one awakens during the middle of the night and is upset, stay calm. Ask what he or she needs, and reassure that everything is all right. A reminder of the time of day may be helpful. Don’t argue or demand explanations. If you find your loved one wandering in the house, gently guide him or her back to bed or ask if there is a need to go to the bathroom or a desire for a drink of water, and then a gentle reminder that it is time to go to bed.
  • Your doctor can help. If these tactics don’t work, call your doctor. Physical ailments such as bladder or incontinence problems could be interfering with your loved one’s sleep. Your loved one may have an underlying sleep disorder, such as Sleep Apnea or Periodic Limb Movement Disorder that may benefit from evaluation and treatment. Your doctor may also be able to prescribe medication to help the person relax at night or may be able to change a medication if it’s disturbing sleep.


Moving from one house to another can spur anxiety in almost anybody. For people with dementia, however, changes in routine and an unfamiliar environment can be especially stressful. Here’s some advice for making the transition to a new home or care facility as comfortable as possible for the person with dementia.

Add familiar touches

Even before you bring a loved one to a new home, it’s important that the room or space where the person will be is made to look and feel as familiar as possible.

When your loved one sees his or her own things, it triggers that it’s your loved one’s own space — which is important. Some things you can do before the person moves in include:

  • Add a favorite quilt or piece of furniture, such as a chair, perhaps a shelf with special items, and other meaningful possessions belonging to the person.
  • Bring pictures of family and friends, memory books or photo albums. These are particularly important.

Reminiscing about the past is especially important for people with dementia, and items that enable them do this help create comfort and reduce anxiety. Label the pictures so staff will know the names of the people in them and can talk more knowingly about them.

Make a moving day plan

Plan for the day that you will have to move your loved one. Talk to your loved one — while he or she can still make choices — about what he or she wants. Where does your loved one want to live? Explore all your housing options. Start talking before a move is imminent.

On the actual day, move your loved one during the “best” time of his or her day — whether morning or afternoon. This can also make the transition go more smoothly.

In addition, spend time during moving day reminiscing with your loved one, looking at photo albums or memory boxes. This activity is helpful not only for relieving anxiety in the person with the disorder but also for you.


As primary caregiver for your loved one with dementia, you know what an overwhelming and time-consuming job it can be. Even with help from extended family, you may reach a point where you need to enlist the help of others — whether church volunteers or home health aides — to allow you to take short breaks or to provide ongoing help.

It’s important to know what options are available in your community for caregiving assistance. The key is to identify these options before you need them because it may take some time to implement them. Here’s how to get started.

Consider what kind of help you need

As primary caregiver, you know your loved one’s routines, medical concerns and personality. Does your loved one need:

  • Consistent companionship and socialization?
  • Supervision during certain hours of the day for safety reasons?
  • Help with dressing, bathing or eating?
  • Medical assistance with injections, a catheter or a medical device, such as an oxygen tank?

Also, take into consideration your own needs. Do you need regular help with certain household chores or short breaks from your caregiving responsibilities? Your answers to these questions will help guide you to the appropriate individuals and agencies.

Examine your options for help

Depending on your need, you have several options for help:

  • Volunteer assistance. You may find willing volunteers in your neighborhood, church or workplace. Volunteers can provide companionship for your loved one as well as assist you with tasks such as running errands, driving to and from doctor’s appointments or making meals. The Area Agency on Aging’s Elder Locator may be able to help you find a volunteer. Call 800-677-1116 to find the agency nearest you.
  • Homemakers. They provide home management services, including vacuuming, grocery shopping, laundry and meal preparation.
  • Home health aides and personal care attendants. These people assist with personal care, such as bathing, dressing and grooming. They work under the supervision of a professional nurse or physical or speech therapist.

Your local Alzheimer’s Association chapter can help you identify volunteer programs, trained individuals and the names of agencies that provide other supportive and health care services. To locate your local chapter of the Alzheimer’s Association, call 800-272-3900.

To help you narrow your caregiving-assistance options, consider the following:

  • Specialized skills required. Does your loved one have difficulty communicating or walking, have safety concerns or need help in the bathroom?
  • Time needed. How much help do you need? A few hours a week, a couple of days a week, every day, overnight or weekends? Also, factor in your own need for time to do errands and to rest.
  • Best location. Where can care be provided? At home or at an elder care facility, a residential setting or a medical care facility?
  • Payment options. How will you pay for the care? Check what your loved one’s insurance will cover. Consult with physician for prescriptive in-home help, such as visiting nurses. Contact an elder attorney for assistance with determining what your state allows for financial assistance and medicare/medicaid assistance. Does your loved one qualify for government assistance? If you’re planning to pay out-of-pocket, how much are you able to spend?

Hiring help

Develop a list of questions to guide your inquiries and interviews with job candidates. Here are several questions to get you started:

  • What training have you had?
  • What past in-home care experience have you had?
  • What is your past experience working with someone who has dementia?
  • Why are you interested in this type of work?
  • What special skills do you have, such as singing, playing the piano, doing activities?

Some additional tips:

  • Ask the candidate to respond to a particular hypothetical situation. For example, “If my father insists that he can leave the house and drive the car, what would you do?”
  • Get recommendations and check references. You can get recommendations from local home health care agencies, your local Office on Aging, the American Association of Retired Persons or your local Alzheimer’s Association chapter. Always check the candidate’s references.

Entrusting your loved one to the care of others is a big step. But don’t be afraid to ask for help when you need it. By taking the time to pinpoint your needs and identify the appropriate type of help, you can rest assured that you’re doing the best thing for yourself and your loved one.


As a caregiver, it is very important that you make sure your own needs are met and that you take care of yourself as well.

  • Identify the stressors in your caregiving role. What tasks or behaviors are most frustrating or anxiety-producing? Think through and plan your responses to these stressful situations.
  • Access all the information you can about the disease and educate yourself as much as possible about its progression.
  • Get adequate rest.
  • Try to keep incidents in perspective.
  • Write feelings or thoughts in a journal. Writing things down will often help put them into better perspective and will be a way of releasing emotions.
  • Set realistic goals regarding what and how much you can do for your loved one.
  • Be good to yourself. Give yourself frequent praise and rewards for your patience and endurance. Continue to find ways to have fun.
  • Use your sense of humor – it relieves stress and is a positive emotional release for both of you.
  • Identify and be willing to use your support system. Avoid isolation. Have someone available to vent.
  • If family or friends offer help, accept it.
  • Set aside certain days or parts of certain days for yourself, and find a companion or day program for your loved one for that period of time.
  • Forgive yourself for not being perfect and stop trying to be perfect. Don’t be hard on yourself when you experience impatience, frustration, sadness or anger.
  • Take care of yourself physically and emotionally. Eat well balanced meals, get regular checkups and exercise.
  • Find sources for personal satisfaction.


Caring for a person with dementia can be an overwhelming experience. The physical demands can be exhausting. In addition, there is the emotional stress of trying to balance caregiving with your job, family and other relationships. It’s not uncommon to feel angry, guilty, frustrated, discouraged, worried, grief-stricken, isolated and taken for granted.

A dementia support group provides you with an opportunity to share these feelings, learn new caregiving techniques and identify resources.

Benefits of support groups

  • Provide you with up-to-date information and ongoing education about dementia and caregiving
  • Provide practical suggestions regarding challenging behaviors
  • Allow you to verbalize your thoughts and feelings about caregiving
  • Teach you various methods of coping with the stress of caregiving
  • Identify additional caregiving options and resources
  • Help prepare you for future planning and decision making
  • Give you the opportunity to meet other people who can empathize with your situation

Do you have to join a group?

Support groups aren’t for everyone. Some people find that friends and family are sufficient. However, support groups can be beneficial if you find you’re emotionally drained in spite of support from your family and friends. You may feel less alone when talking with others who face similar dementia challenges.

Types of groups

In general, support groups fall into two main categories: those led by professional facilitators (doctor, nurse, social worker) and those led by group members, which are often called peer or self-help groups.

Some groups are more educational and structured. Members may invite a doctor to talk about a specific challenge of dementia or a new experimental treatment. Other groups emphasize emotional support and shared experience.

In addition to traditional support groups, the Internet offers virtual dementia support groups and communities. There are LBD support groups listed on the Lewy Body Dementia Association website

The Alzheimer’s Association’s caregivers’ community allows youto connect with other caregivers and share artwork, poetry and short stories related to your experience.

Finding a group

To find a dementia support group near you:

  • Visit the Lewy Body Dementia Association website for local and online LBD support groups.
  • Visit the Alzheimer’s Association website. Type in your ZIP code or search by state.
  • Contact the Area Agency on Aging in your area.
  • Ask a health care provider for assistance. A doctor, nurse, social worker, clergy member or psychologist may be able to refer you to a local dementia support group.
  • Check your local telephone book and newspaper for a listing of dementia support resources.
  • Contact community centers, libraries, churches or synagogues in your area. Some offer support groups.
  • Ask others you know for suggestions.

Most support groups are free, collect voluntary donations or charge only modest membership dues to cover expenses.
Choosing a support group

Choosing a group that’s right for you depends on several factors. The key is finding one that matches your needs – and personality.

You may find that you prefer a structured, moderated group. Or you may feel more at ease meeting less formally with a small group of people. The anonymity of going online may be appealing, but the trade-off may be that you don’t know who else is online with you or whether you can believe everything you read.

If you decide to take part in a group (real or virtual), try it out a few times. If you don’t find it useful or comfortable, you don’t have to continue. Trust your gut feeling. If you’re nervous or hesitant about sharing personal issues with a group of people you don’t know, consider attending one meeting. You don’t have to talk, and you may gain from just listening.

You may have to experiment with different kinds of support groups before you find one that meets your needs. But keep at it. You may learn new things and form new friendships. And you just might find that a support group helps you cope more effectively with the demands of dementia caregiving in your everyday life.


© 2016 Lewy Body Dementia Association, Inc.