Understanding and managing behaviour problems caused by dementia

One of the most challenging aspects of caring for a loved one with dementia is dealing with personality and behaviour changes caused by the disease. Changes in the brain affect memory, judgement, orientation, mood and behaviour, which can result in agitation, aggression, wandering, resistance to care, delusions, hallucinations and repetitive speech.

Often called “challenging behaviours,” people with dementia prefer the term “responsive behaviours” because it more accurately reflects that these behaviours (actions, words, gestures) are an intentional or unintentional response to something happening to them or going on around them. A responsive behaviour is a means of communication for those with difficulty expressing thoughts, feelings and needs.

All behaviour occurs for a reason. When a person with dementia is uncooperative and resistant to activities such as bathing, dressing and eating, it is often a response to feeling out of control, rushed, afraid or confused. Verbal outbursts such as swearing, arguing and making threats are often expressions of anger or stress.

It’s important to remember that people with dementia are not deliberately being difficult. Their perceptions and their sense of reality have been changed by the disease.

Strategies to address common responsive behaviours

An important lesson to guide you as you develop strategies to address responsive behaviours from your loved one is: you cannot control or change their behaviour, but you can control or change your own behaviour. You need to be creative, flexible, patient and compassionate because something that worked today may not work tomorrow. The environment you create at home and the way you communicate with your loved one can make a significant difference.

It is also important to check with your loved one’s doctor to determine if there could be a medical reason for behavioural problems. Perhaps your loved one is in pain or experiencing an adverse side effect from medications. In some cases, such as incontinence or hallucinations, there may be a medication or treatment to help manage the problem.

While medications may be suggested for some responsive behaviours, recent evidence recommends non-drug approaches that calm and reassure people should be considered first. Person-centred care and communication, sensory stimulation such as hand massage, and listening to music are three evidence-based therapies that can help reduce agitation and other responsive behaviours for people with dementia. Relaxing music has been shown to promote cooperation during meal times and while receiving one-on-one personal care, such as bathing.

Here are some strategies for five of the most common responsive behaviours:

1. Repetition

Repetitive behaviours such as asking the same question over and over or constant hand rubbing are often due to memory loss. They could also reflect feelings of insecurity, loneliness or loss. In some cases, they could indicate a physical need is not being met. For instance, if your loved one repeatedly pulls at their clothing, they may need to go to the bathroom.

What you can do

• Use distraction. Involve the person in an activity that they enjoy, go for a walk or offer a snack.
• Carefully consider the question they are asking and respond to the emotion being expressed. Avoid telling the person that they have already asked the question as this may be upsetting.
• Speak calmly when answering the question, even if you have already answered it numerous times.
• Help cue their memory by posting calendars, notices of meal times (if they can still read), or signs to help orient themselves to the environment (for example, the word “toilet” or a picture of a toilet on the bathroom door).
• For repetitive actions, such as tapping or hand wringing, try giving them something to occupy their hands. Offer a doll, some string, a face cloth or a soft ball.
• Fit the repetitive action into the normal household chores. The person may enjoy dusting the same area over and over again.
  Some events or objects at home may trigger repetitive behaviour. For example, when your loved one sees coats, hats and gloves, they may react by repeating statements about going home. Be alert for these triggers. Observe the behaviour and keep notes.

2. Wandering

Sometimes wandering is a result of boredom or searching for something familiar. Helping your loved one connect with items and objects that are familiar to them (e.g., photos, personal items) can be helpful.

What you can do

• Secure doors and gates.
• Ensure your loved one has ID with their phone number and address.
• Maintain regular routines.
• Provide physical activity to help reduce their need to wander.
• Provide opportunities for mental stimulation.
• Provide reassurance about where they are.

3. Anger/Agitation/Aggression

Your loved one may become angry for reasons that are not immediately obvious. This could be due in part to the sense of grief and loss they are experiencing as their world slowly becomes less familiar. It could also be due to fear of a situation or a person they find threatening. As the disease progresses, your loved one will find it increasingly difficult to express emotions in appropriate ways.

Aggression may be physical (e.g. hitting, slapping, biting, twisting an arm, punching) or verbal (e.g. shouting, name calling). Aggressive behaviour may happen quite suddenly, without any apparent reason, or it may follow a stressful event.

What you can do

• Watch for signs of increasing anxiety, particularly an increase in movement.
  • Are they afraid of something that just happened?
  • Are they fearful of what they’re about to do?
  • Do they need reassurance?
  • Are they being overloaded with stimulation or demands?
• Reassure them with a gentle voice. Try to determine their need and provide care to meet that need.
• Reduce noise and activity levels. Try to keep a balance between restful and active periods.
• Maintain a consistent daily routine. Avoid changes to both routine and environment.
• When communicating, avoid arguing. Avoid expressing anger or irritation, either verbally or non-verbally (body language). Speak slowly and use repetition.
• Make sure activities are broken down into manageable steps and that instruction is given clearly.
• Switch their focus and occupy them. They will probably forget why they were feeling angry or upset.
• Approach from the front and retain eye contact. Approaching from behind or the side can startle and confuse them.
• Use touch carefully as it may provoke further agitated behaviour.
• Use distraction. Try a snack, another activity or topic of discussion.
• Reduce caffeine intake, sugar, and other foods that cause spikes in energy.
• Try gentle touch, soothing music, reading or walks to reduce agitation. Do not try to restrain them during a period of agitation.
• Keep dangerous objects out of reach.
• Support their independence. Allow them to do as much as they can for themselves.

At any time, if you sense you are in danger, leave the room and call for help.

4. Socially Inappropriate Behaviour

People with dementia can lose the ability to remember how to respond and behave in a socially acceptable manner. They’re usually not aware they’re breaking social rules. The behaviour may occur because they can’t find the right word to express themselves, can’t maintain a train of thought, or simply lose self-control or inhibition.

What you can do

• Stay calm. Don’t overreact or argue, regardless of how extreme the behaviour may be. If you show distress, you may create distress in them.
• Be positive and reassuring. Avoid drawing attention to their error.
• If possible, distract them with conversation. Gently lead them away from the room and correct the error. For example, if they arrive in the living room without their pants on, take them back to the bedroom and have them finish dressing. Don’t make an issue of it.
• Don’t scold or punish. They are not aware their behaviour is inappropriate. Lecturing or trying to get them to relearn the correct behaviour won’t work. It will only cause them (and you) distress.

5. Sexual Behaviour

Sexually inappropriate behaviour, such as genital touching or undressing in public, lewd remarks, unreasonable sexual demands, even sexually aggressive behaviour, may occur as dementia progresses. Remember that this behaviour is caused by the disease.

What you can do

• When your loved one shows some form of sexual desire, they may be trying to express another unrelated need:
  • If a man opens his zipper or removes his clothing, does he need to use the toilet?
  • If a woman raises her skirt, is she looking for a bathroom?
  • Could the behaviour be a request for attention?
  • Are they lonely or bored?
  • Did they misinterpret the touch or approach of a caregiver?
• If the sexual expression is indeed a need to express sexual desire, it is probably best to give them some privacy to satisfy their needs. Don’t judge or scold.
• If sexual satisfaction is not possible, try to distract them to another activity they will enjoy.
• If you are the object of the sexual desire, don’t get upset. Stay calm. Keep your sense of humour. Try to distract them into another, non-sexual activity.
• If they make sexual advances to a visitor or stranger, try to distract them. Take them away from the situation. Explain the circumstances to the other person. You may need to leave your loved one alone in their room so that they can satisfy their sexual need.
• Avoid approaching the person in ways that might be misunderstood, such as sitting hip to hip on the bed, putting your arm around their waist, stroking their knee.

Bayshore Home Health can help

The stresses of caring for a loved one with dementia can take a toll on caregivers, but help is available. Your local Alzheimer Society can provide information, resources, support and counselling. If you need help at home, Bayshore Home Health offers quality home care services provided by experienced caregivers trained and certified to care for individuals with dementia and help manage responsive behaviours. Our services are available on a regular basis or as needed to provide respite to family caregivers for a few hours, a few days, or even a week.

Contact us today for a free consultation.