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?
Causes of Problem Behavior
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.
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.
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.
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.
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.
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.
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.
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.
Resources & References
Helpguide’s Yellow Pages
Resources for public assistance, social services, and other health and human services.
Managing Alzheimer’s behavior problems
Dealing with Behavior Problems – Links to detailed materials on agitation/anxiety, aggressiveness/combativeness, delusions/paranoia, apathy/depression, screaming/vocalization, sexual behavior problems and sleep disorders. (Alzheimer’s Association)
Managing Agitation Behavior in Alzheimer's Patients – Demented patients show a variety of different behavioral problems, including anger, agitation, depression, suspiciousness, paranoia, wandering, sexual inappropriateness, hallucinations, and delusions. (HealingWell.com)
The “Challenging Behaviors” Index – An A-Z directory of how to care for and respond to the difficult behaviors of a person with Alzheimer's Disease or other dementia. (Alzheimer's Outreach)
Caring for Someone with Dementia: Unusual Behaviour – Provides tips for dealing with unusual behaviors such as repetitive questions, phrases, or motions; following; calling out; lack of inhibition; laughing or crying uncontrollably; pacing; fidgeting; and suspiciousness. Links to articles on more common behaviors like wandering and aggressiveness. (Alzheimer's Society of the UK)
Hands-On Skills for Caregivers – Gives practical, insightful tips for how to physically approach a difficult patient; how to talk to them respectfully; and how to get them to co-operate with you, both physically and mentally. (Family Caregiver Alliance/National Center on Caregiving)
The Dartmouth Memory Handbook – Digital copy of the 4th Edition edited by Robert B. Santulli, M.D, associate professor of psychiatry at the Geisel School of Medicine at Dartmouth. Includes chapters on dealing with behavior problems. (Caldwell Law)
Pet therapy for managing Alzheimer’s behavior problems
Animal Therapy Group Listing – Offers an international directory of organizations that offer assisted animal therapy. (Land of Pure Gold Foundation)
Management of home safety; safe return program
Home Safety Behavior-By-Behavior – Ways to make your home safe for the Alzheimer's patient who wanders, who rummages or hides things, who hallucinates; tips for social occasions at home and for adjusting the home environment to compensate for failing senses. (ADEAR: Alzheimer's Disease Education & Referral Center)
Safe Return Program – A nationwide U.S. program where you enroll the patient for help with wandering: includes identification products, a network of local chapters, a 24-hour emergency crisis line, and a photo database. (Alzheimer’s Association)