Behaviour and Stigma

An important focus of this year’s Alzheimer’s Awareness Month is the topic of stigma, which is a negative belief or stereotype surrounding a person or group of people. In the case of Alzheimer’s and dementia, stigma often surrounds the idea that the people afflicted are unable to fully take part in society based on their perceived inability to communicate with the real world.

This view is disparaging and has its basis in the reality that people with dementia often act in ways that do not line up with societal norms.

Challenging or difficult behaviour is characterised as any kind of non-verbal, verbal or physical behaviour which makes it difficult to safely deliver good care. Common examples in patients with dementia include aggression, unexplained frustration or anger, wandering, as well as an increased rate of decline in physical abilities.

Challenges to Caregivers

Each of the above behavioural issues can represent serious challenges to the caregivers or family members of those who are living with Alzheimer’s. However, the expert caregiver and educator on the topic of dementia, Teepa Snow notes, it is important to try to frame difficult behaviour in a positive light. This means taking the time to understand what the root causes of the behaviour might be.

Taking the time to understand that the person living with dementia is not deliberately misbehaving, but earnestly thinks that their actions are reasonable and justified, is a great starting point in this process. Shifting the focus as a caregiver to the idea that these people are experiencing a different reality than our own allows for a greater sense of empathy for the patient’s situation and the reasons behind the action.

Categorize the Behaviour

While the behaviour might well be annoying to you, and possibly those around you, before taking action it is important to recognize, objectively, whether or not the action is truly a problem behaviour or not.

By asking if the behaviour presents a risk to themselves or another person around them will direct how to go about handling the situation and the behaviour at the root of it. Even if the behaviour is peculiar and perhaps disruptive to your schedule, so long as it is not placing anyone in immediate danger, it is best to allow the patient a sense of freedom of choice and action rather than correcting or admonishing their actions.

Challenging Stigma Through Empathy

When frustration or anger takes hold of the patient, caregivers should take care to listen to and validate the feelings. Again, as you to listen to them, try to understand what the underlying problem might be, pay attention to body language, and ask positive questions. Telling a person living with dementia that they are wrong or overreacting will only agitate the situation.

During Alzheimer’s Awareness Month, the Alzheimer’s Society of Canada asks that we challenge the impact of stigma on people with Alzheimer’s and dementia by understanding that the change really does start at the personal level. Being able to recognize and have empathy for those around us living with dementia, whether as their caregivers, friends or family, will enable a positive relationship of understanding and compassion to come forth in our communities.