Managing Behaviours and Communications
The information in this section can help you if you’re asking yourself questions like:
- How am I supposed to react when my loved one gets upset or won’t accept help?
- What do I do if my loved one is wandering?
- Is my loved one doing this on purpose?
- What do I do if my loved one’s behaviour is affecting their care? E.g. refusing a bath, refusing caregivers in their home, inappropriate sexual comments towards others
- I’m having trouble understanding why my loved one is acting this way – how do I talk to them?
Behaviour is the way in which one acts or conducts oneself, especially toward others. “Responsive behaviours” is a term, preferred by persons with dementia, representing how their actions, words and gestures are a response, often intentional, that express something important about their personal, social or physical environment. They are the result of changes in the brain affecting memory, judgement, orientation, mood and behaviour.
Responsive behaviours associated with dementia can include frustration, agitation, aggression, repetition, suspiciousness, confusion, restlessness and wandering. These apparent changes in the personality of the person with the disease are a major source of distress both to the person who is presenting the behaviours and to those who experience them. It is important to remember that all behaviour has meaning and it is a form of communication. Understanding the symptoms of dementia is a good place to start. www.rethinkdementia.ca - 10 warning signs in 2 languages.
Given the damage of the brain caused by dementia, a person interprets the world in a very different way. The rethinkdementia.ca website has videos available to help you understand some behaviours and tips to support challenges.
Above all else – get support, and understand that these behaviours shouldn’t be taken personally.
Communication is more than talking and listening. It involves understanding and interpreting. Remember that dementia affects many types of brain functions that include using language and understanding it’s meaning. Learning strategies to maintain and enhance communication will help persons living with dementia and you to cope as the disease progresses.
This 4-minute video provides some effective tips for communicating effectively with people living with dementia.
All of us have “triggers” – things that cause us to become agitated or stressed. For people living with dementia or memory loss, it may be more difficult to control reactions and responses to triggers. This is why it’s so important to recognize and understand triggers’ for people’s behaviours.
Shifting focus is a tool to help the families and friends of people with dementia understand behaviour caused by the disease. Shifting focus: a guide to understanding dementia behaviour is available in a short booklet or full guide which can be downloaded and printed at your home. There is also a 3-minute video that is part of the Shifting Focus materials.
Here are some questions you can ask yourself, from Shifting Focus, when you’re trying to understand what might be potential triggers for behaviour:
- Physical – Are her basic needs met? Is she in discomfort or pain? What changes in her physical condition do you see (e.g. grimacing, eating patterns, energy level)?
- Intellectual – Has he experienced recent changes in his memory? Has he been showing impulsive behaviour (swearing, sexual behaviour)? Is he struggling with speech or sequenced tasks (getting dressed)?
- Emotional – Have you noticed increased tearfulness or anxiety? Does he seem lonely? Has he exhibited any new unusual behaviour (e.g. suspicious of others)?
- Capabilities – Can your Mom do more than you realize? Does your husband understand that he may need help?
- Environment – Is there too much noise or too large of a crowd around your friend? Is the lighting poor, making it hard for him to navigate? Is there enough stimulation?
- Social – Do her childhood, early adulthood or employment experiences offer insight? What do you know about his religion or culture?
- Actions of others – What are you doing or not that may contribute to her behaviour?
As each of us is unique, so are the behaviors of each person with dementia. In order to choose the most appropriate strategy, it is important to investigate possible causes of the behavior. Whether brainstorming on your own, with family and friends, caregivers, the Alzheimer Society or health professionals, it can be helpful to track:
ABC’s (Antecedents, Behaviour, Consequences)
A simple chart for caregivers may look like this:
When did it start and how long did it last?
What was happening before the behaviour began?
Describe the behaviour in neutral, clear terms (ex. “raised voice for 2 minutes, swore” rather than “verbally aggressive”)
What happened next, what did the caregiver do, how did the person with dementia respond, who was affected by the behaviour
The online resources include more information about understanding behaviours, possible causes, and strategies that can be helpful.
Contact your physician to ensure that the behaviour is not caused by an underlying medical issue causing increased temporary confusion (delirium), such as an infection, as well as for a possible referral to speciality services:
- If the person with dementia is experiencing a number of different physical health issues, you may want to speak to your family doctor about being referred to a local service to have a geriatric assessment – this assessment is for people aged 65 and over who have a variety of concerns such as:
- Recent changes in physical, mental or functional abilities, changes in memory and/or mood.
- Major changes in support needs, caregiver stress and future planning.
- Safety concerns - physical, psychological, social, environmental.
- Sudden increase in the use of health care services over the last 6 months.
- If the person with dementia is experiencing a change in mood or if the behavior is becoming challenging, you may want to speak to your family doctor about being referred to specialized behavioral support services. These services generally include:
- Global assessment of mood, cognition, function, safety and behavior
- Non-pharmacological recommendations (such as education, referral to services, care strategies) and, as needed, pharmacological recommendations to optimize function and decrease caregiver burden.
Wandering is a major issue for families to cope with – please see below from Mount Sinai that summarizes some of the potential causes of wandering and strategies that can be helpful (the full report can be found in our downloadable Online Resources document, at the top of the page).
- Potential causes/meaning of wandering:
- This behaviour may be goal orientated yet unrealistic (eg: thinking they are going to work or home).
- May be associated with unrealistic worrying about someone and wanting to go and check on them.
- Not understanding that they cannot function on their own (impaired insight i.e. anosognosia- not knowing they don’t know)
- This behaviour may also be caused by boredom due to lack of appropriate stimulation.
- Non-goal orientated (stimulus bound) behaviour may be an impulsive reaction to seeing the door.
- Potential strategies that could be helpful:
- Adhere to a routine.
- Register the individual with MedicAlert + Alzheimer’s Society Safely Home program. The patient will be required to wear a bracelet or necklace with contact information.
- Inform neighbors and local police.
- Keep doors locked, add a keyed deadbolt, or keypad to the doors. Also consider putting up a stop sign to discourage person from exiting. Use sophisticated door knobs (can be placed on top of the old ones at low cost). Hide exits with curtains, or paint a black circle on the floor, often the individual will think it is a hole and will not exit. Camouflage the door knob with the same colour as the door. Cover any windows on the door to remove the ‘trigger’ point (door knob), and prevent an impulse to open the door. Attention: Do not conceal/lock/block exit when a person is alone as they may not be able to escape in case of an emergency.
- Install a chime that will trigger when the door opens.
- For more technological solutions follow this link or search online for smart alarm/GPS/Amber Alert devices.
- Understanding Behaviours and Communications
- Coping with Behaviours
Understanding Behaviour. Developed by the Alzheimer Society of Canada, information on examples of behaviour changes and strategies to cope with it. Like, wandering, suspiciousness, aggression, repetition.
Shifting Focus a guide to understanding dementia behaviour is an online booklet developed by the Alzheimer Society of Ontario to help the families and friends of people with dementia understand behaviour caused by the disease.
Shifting Focus a guide to understanding behaviour, video series. The Alzheimer Society of Ontario has developed a series of short videos, hosted by Shifting Focus author, Jillian McConnell, she explains tips and strategies to cope with sundowning, agitation, wandering, repetition and more.
Managing Triggers. Online resource as part of the By Us For Us Guides© developed by University of Waterloo’s Murray Alzheimer Research Education Program. Information for persons living with dementia and their care partners to recognize and manage the symptoms of the disease, therefore enhancing a sense of wellbeing.
Communication strategies for caregivers. A resource by the Alzheimer Society of Canada. This resource highlights how communication is more than talking and listening, it involves understanding and interpreting. Learning strategies to maintain and enhance communication will help persons living with dementia and their caregivers to cope better as the disease progresses.
All About Me Booklet from the Alzheimer Society of Canada is a resource for people with dementia to tell healthcare providers about themselves –their needs, likes, dislikes and interests.
Staying Active. Tips to live well by the Alzheimer Society of Canada. Staying active can help to minimize behaviour changes in persons living with a dementia.
Quality Standards Behavioural Symptoms of Dementia: Care for Patients in Hospitals and Residents in Long-Term Care Homes, 2016)
How to Handle Challenging Behaviours Developed by Mount Sinai, this is a helpful quick reference that identifies some of the causes of specific behaviours, and strategies that might be helpful.
Specific Behaviours and Tips
Tip sheets with strategies from The Dementia Society of Ottawa and Renfrew County, and the Alzheimer Society of Cornwall and Area.
- Anger and Agitation
- Late Day Restlessness
- Memory Loss
- Sleep Disturbances
- Repetitive Behaviours
ANXIETY fact sheet From the Alzheimer Society of Canada this fact sheet discusses the middle stage of Alzheimer’s disease and discusses anxiety as well as changes in mood and emotions.
See also Coping with Behaviours
Wandering fact sheet from the Alzheimer Society of Canada
Locating Devices: Produced by The Alzheimer Society of Canada, it summarizes the various locating device options for people who are at risk of wandering.