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Dementia is a collective name for progressive degenerative brain syndromes which affect memory, thinking, behaviour and emotion.

Common symptoms of dementia include:

Loss of recent memory
Misplacing items
Confusion with time and location
Difficulty in finding the right words or understanding what people are saying
Trouble with images and spaces
Difficulty in solving problems
Poor judgement
Difficulty in performing previously routine tasks
Changes in personality, emotions, behaviour and mood

As dementia advances, difficult/problem behaviours invariably emerge and cause the greatest caregiver stress. Nonpharmacologic approaches are preferred as first-line treatment for adverse behaviours because they do not incur side effects, which are inherent in pharmacologic approaches, and the literature suggests that they can be effective. We have put together this guide describing the non-pharmacological approaches to managing common difficult behaviours seen during the course of dementia.

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Common Triggers of Problem Behaviours

Before attributing any new onset problem behaviour to the underlying dementia, it is always advisable to try to look for any triggers or contributing factors. These triggers can stem from the person with dementia (PWD), the caregiver, and/or the environment.

Are basic needs causing discomfort for the patient (hunger, thirst, bathroom break (constipation), fatigue, stress, fear)?
What is the patient’s body language saying (pain, discomfort, effort to communicate)?
How are others reacting to behaviours and could this be causing the patient distress (anger, disapproval, fear)?
What are the current surroundings the patient is in (unfamiliar, disoriented, over-stimulating, language barriers, new people)?

With this basic understanding of the three important reasons for problem behaviours in dementia – we shall learn about strategies to modify each of these component arms one by one.

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Recommended communication strategies for caregivers

Knowing how best to communicate with a person with dementia is probably the most important skill to acquire for caregivers. Below are some recommended strategies:

Use short, simple sentences.
Speak slowly.
Ask one question at a time or present sequential instructions one step at a time.
Avoid interrupting the patient.
Allow plenty of time for patient response.
Establish eye contact and approach slowly from the front rather than the back.
Eliminate distractions (shut off the TV or radio while communicating).
Use yes/no rather than open-ended questions.
Paraphrase repeated messages that the patient may not understand.
Use the same wording when repeating messages that are understood.
Ask the patient to talk around the word for which he or she is searching (describe it or describe the context; circumlocution).
Use visual cues (patients often point to what they want or mean).
Be aware of paraphasias (word substitutions by the patient).
Make topic context bound (e.g., speak about food preferences when eating, not in between meals).
Use distraction or change the subject if a topic is upsetting to the patient (i.e., if he or she is getting agitated); come back to the topic later, when the patient is calmer.

These are the strategies to avoid while communicating with a person with dementia:

Avoid negative words, tone, and facial expressions.
Don’t ask the person with dementia to “try harder.”
Don’t tell the person that he or she is wrong.
Don’t lose your cool or get agitated as it may end up worsening the problem behaviour. Try to stay calm.
Do not try to restrict your loved one’s activities excessively due to safety concerns. Allow the person to keep as much control of his or her life as possible as long as the person is safe.
Do not have unrealistic expectations from your loved one and from yourself. As the disease progresses, both of you will need more help.

General principles while handling difficult behaviours in dementia

The following are some general principles worth remembering while handling difficult behaviours in someone diagnosed with dementia:

Be flexible and improvise.
The behaviours and emotions of the person with dementia can change unexpectedly, so try to “roll with the punches.” What worked yesterday may not work today.
Don’t take it personally. Your loved one’s behavior and statements are not intentional, manipulative, or meant to be hurtful.
Don’t try to reason or convince. The person’s ability to use logic may not be working properly.
Try to find the truth or emotion in what the person is saying and talk about that. For example, if the person fears that food is poisoned, discuss feeling afraid. This is called validation.
Consider the use of distraction techniques while maintaining clear communication
Avoid punishment, blame or ridicule

Behavioural Modification Approaches

When faced with a difficult behaviour in a person with dementia strategies need to be aimed both at the person with dementia as well as the immediate environment of the person with dementia.

Strategies directed towards individuals

Use a gentle, calm approach
Give reassurance
Empathize with and acknowledge concerns
Use distraction or redirection to alter focus
Increase calming sensory stimulation (e.g., music therapy and personalized activities)
Maintain routines to avoid disorientation - knowing what to expect and when it will happen can be comforting for your loved one.
Schedule pleasurable activities (e.g., music, singing, dancing, sharing a meal with favourite foods)
Increase daytime activities - activities to consider - walking, talking on the phone, visiting with friends, having a snack, housework, going out to eat, shopping, going to church, praying, or other religious activities.
Schedule meaningful activities. Find ways that the person can contribute (e.g., setting the table, folding laundry, washing/peeling vegetables). Allow the person to take advantage of his or her remaining social skills.

Strategies directed towards the environment

Avoid sensory deprivation [understimulation]
Avoid overstimulating environments [very bright, noisy, cluttered or crowded environments]
Provide an open, safe, contained environment
Remove objects if hyperoral behaviors are present
Increase lighting to reduce evening and night-time confusion

Caring for the Caregiver

Caring for a loved one with dementia is demanding and stressful. Please be kind on yourself so that you can be maximally kind towards your loved one.

Take care of yourself (as advised on airplanes: “Put on your oxygen mask before helping others with their masks”).
Eat healthy foods. Exercise regularly. Don’t drink too much coffee/tea.
Don’t drink too much alcohol or take mind-altering drugs.
Make sure to get enough sleep. If your loved one is up at night, you may need to get night-time help.
Get routine medical care. When sick, seek medical care.
Take regular breaks. Walk away when frustrated or exhausted. Plan respite care regularly.
Arrange for home care services and adult day care.
Attend support groups for caregivers. Use online caregiver supports.
Schedule activities with your friends and family.
Watch for signs of burning out: anxiety, depression, becoming easily angered, trouble sleeping, losing interest or hope, suicidal thinking, poor eating habits, drinking too much alcohol, using mind-altering drugs, trouble concentrating. Get help.

Managing Specific Problem Behaviours

Listed below are many of the common behaviours encountered in a person with dementia and advice on how best to manage them at home. Different behaviours can appear at different stages of the illness – so please refer to the document as and when you encounter new behaviours in your loved one with dementia. Always consult with your healthcare provider on the suitability and effectiveness of these approaches at regular intervals.

Repetitive Questioning/Activity

To avoid repetitive questions, don’t announce anything more than 24 hours in

advance.

Look for the reason as well as emotion behind the behaviour (e.g., if the person asks about his grandchild, talk about the grandchild and look at pictures together).
If the repetition is a form of action – make an activity for it.
Avoid telling the person that they have previously asked the same question, as they might not remember.
Answer the question and then redirect to another activity.
For repetitive questions about an upcoming appointment activity or event -

write it down on a cue card and ask the person to read the information on the card (if they are able). Sometimes he/she will start to look at the cue card automatically – this involves using procedural memory.

You can write a new card every day with simple reminders of what time an event will happen, the answer to a specific question, etc.

It is important to remember that the behaviours that people with dementia exhibit are not their fault. They are caused by the disease itself. When we understand this, it can help us to be more patient and compassionate to these elders.

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Sleep Difficulties

Schedule enough activities during the day to keep the person busy.
Encourage your loved one to exercise daily and get enough exposure to light.
Create a daily routine with the same waking time and bedtime each day.
Napping is okay, as long as it is not too late (e.g., 3 P.M. or later) and not too long (more than 1 hour). It may be helpful to schedule one or two rest periods each day.
If your loved one drinks coffee or tea, switch to decaffeinated versions. The person should avoid drinking alcohol, smoking tobacco, and using mind-altering drugs.
Before bedtime, create a calm and soothing environment. Turn off the television. Soothing music may help. Read to your loved one.
Keep a nightlight on in the bedroom, hallways, and bathroom.
If your loved one is up at night, approach him or her calmly; see if the person needs something; and gently remind him or her that it is bedtime, without arguing.
You may need help at night (e.g., a paid caregiver or another family member)

Sundowning [Restlessness & agitation later in the day]

Arrange the person’s daily schedules so that few major activities take place in the evening.
Try to create a calm, quiet and very predictable evening schedule.
Eliminate caffeine and alcohol later in the day.
Allow the person to pace.
If possible, take an evening stroll which may help to tire the person.

If necessary, consider medication. It’s essential for family caregivers to get their sleep at night, so the person with dementia must sleep, too.

Agitation/aggression

Watch for early signs of agitation or aggression and respond before things escalate.
Keep track of behaviors and try to identify causes or triggers of the behaviors.
Don’t confront or argue. Don’t make sudden movements.
Try distraction. Shift to another activity. Music may be soothing. The person with dementia might forget what he or she was angry about.
Give a person who paces a lot of safe space to walk. Make sure he or she is hydrated and eating snacks. Get him or her good shoes.
Limit access to dangerous items, such as sharp objects and power tools. Remove guns from the home.
If you or your loved one is unsafe, call emergency services.

Toileting Difficulties/Incontinence

Set a regular schedule for using the bathroom.
Encourage a high fibre diet.
Restrict fluid intake two hours before bedtime.
Watch for restless behaviour, which may be a signal that the person needs to use the bathroom.
Respect the person’s privacy as much as possible.
Talk through each step.
Use incontinence aids such as disposable briefs and pads for beds and chairs, or condom catheters for men at night.
Dress the person in manageable clothing and consider eliminating underwear.
Label the toilet door, using bright colours and large letters
Leave the toilet door open so it is easy to find
Providing a chamber pot or commode by the bedside may be helpful
Be sure to clean the person properly, using a washcloth or baby wipes to avoid skin irritations.

Depression and Anxiety

Reassure your loved one that he or she is loved and will not be abandoned.
Schedule regular activities each day. Have the person spend time with others besides you.
Reminisce together about pleasant experiences in the past by flipping through family photo albums.
Listen for suicidal statements and get help right away.

Hallucinations [False Perceptions] and Delusions [Paranoia/Suspiciousness]

Don’t argue or try to reason. Discuss the underlying emotion, which is usually fear (or maybe anger).
If the person is stating that an object is missing or has been stolen, try to search for the object. Then talk about another object you found (e.g., a photo album)—that is, use distraction.
Turn off the television or computer when there are violent or upsetting programs or images.
If the person is “hearing things” (auditory hallucinations), check for noises that he or she could be misinterpreting.
If the person is “seeing things” (visual hallucinations), make sure there is adequate lighting. Look for shadows or reflections that the person could be misinterpreting. Cover or remove mirrors (the person could think his or her own reflection is a stranger).

Pacing/Fidgeting

This can be a sign of the person with dementia trying to communicate a need or distress or can be a prominent symptom of the dementia itself as in Frontotemporal dementia.

Stick to a routine and add new activities to the routine.
Prepare a ‘fidget kit’ which includes items of different textures and materials.
Have them help with more day-to-day activities - safe aspects of meal preparation, cleaning, folding laundry
Provide stimulating games and activities to distract and occupy their time; while choosing activities, keep in mind their strengths and personal preferences
Take them out for regular walks

Wandering

Have the person wear a medical identification bracelet. Register him or her with a service such as the local chapter of the Alzheimer’s Association/Society for a MedicAlert +Safe Return program.
Alert your neighbors and police that your loved one is at risk of wandering. Keep a recent photo on hand.
Keep house keys and car keys out of sight.
Consider putting an alarm or bell on the door. Move the lock to be high or low on the door. Add a slide bolt at the top or bottom of the door.
Schedule activities at the times when your loved one is most likely to wander.
Make sure your loved one has adequate supervision (e.g., not left alone at home).
If your loved one leaves home, search for no more than 15 minutes and then call emergency services.

Additional Problem Areas

Resistance to daily care

People with dementia may become uncooperative and resistive to daily activities such as bathing, dressing, grooming and eating. Often this is a response to feeling out of control, rushed, afraid, or confused by what you are asking of them.

Try to follow the person’s previous routines
Break each task into steps
Explain each step before you do it in a reassuring voice.
Allow plenty of time.
Find ways to have them assist you to their best ability in the process or follow with an activity that they can perform.
To avoid agitation if the person adamantly refuses to brush/bathe/dress, wait and try again later
Two to three good baths or showers per week are usually fine and intermittent sponge baths can be a substitute
Oral swabs (toothettes) used with a diluted hydrogen peroxide solution can be effective for oral hygiene of teeth and gums if the person with dementia refuses to brush with toothpaste and brush.

Apathy [Disinterest or Low Drive]

Try to find tasks and activities the person will enjoy and find meaningful.
— They may find it helpful to have a daily routine.
Break tasks down into simple steps.
— They may find it easier to do several small steps rather than one big step.
— This can also help them feel they are achieving things.
Gently prompt or help the person to start an activity, such as dressing.
— Give lots of encouragement to keep them engaged but try not to fuss over them.
— Be positive and focus on what they have achieved.
Don’t blame the person for being ‘lazy’, unhelpful or uncaring.
— The person is not choosing to have apathy.
— If you feel frustrated, try to remain as calm as you can to avoid the person reacting negatively.

Dressing

Choose loose-fitting, comfortable clothes with easy zippers or snaps and minimal buttons.
Reduce the person’s choices by removing seldom-worn clothes from the closet.
Lay out one article of clothing at a time, in the order it is to be worn.
Remove soiled clothes from the room.
Don’t argue if the person insists on wearing the same thing again.

Verbal outbursts [cursing, arguing, threatening]

These are often expressions of anger or stress.
React by staying calm and reassuring.
Validate your loved one’s feelings and then try to distract or redirect his attention to something else.

Shadowing/Clinging

This is when a person with dementia imitates and follows the caregiver, or constantly talks, asks questions, and interrupts.
Comfort the person with verbal and physical reassurance.
Distraction or redirection might also help.
Giving your loved one a simple job such as folding laundry might help to make her feel needed and useful.

Inappropriate Sexual Behaviour

This may take the form of increased sexual demands from the partner or appearance of disinhibited behaviours such as undressing or fondling themselves in public or making sexual advances to others. Such behaviours are sometimes made because the person with dementia mistakes another person for their partner or they may be an indication of something else, such as the need to go to the toilet.

Gently discourage inappropriate behaviour.
Try to remain focused on the person, not the behaviour.
Try not to shame the person or create an issue
If possible, aim to redirect the person to another activity
Find ways to include different forms of touch in the everyday routine to maintain physical contact, such as holding hands, hugging and massage.
Exercise and use physical energy in ways that make the person feel valued.

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Managing Difficult Behaviours in Dementia

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