Someone who is experiencing dementia may exhibit behaviours that we do not understand. These behaviours have been labeled ‘difficult’ or ‘disruptive’ or ‘challenging’, but is that really a fair assessment of these behaviours?
In caring for people with dementia, the focus often ends up being on the disease itself, rather than on the person who is experiencing the disease. Thus, their behaviours are often automatically assumed to be associated with the disease.
Sharon Stap, a Psychogeriatric Resource Consultant, contrasts older understandings of dementia with more updated approaches. In the past, it was understood that dementia was altering someone’s brain, resulting in different behaviour. All behaviour was assumed to be a result of the disease.
The newer understanding of dementia is that the changes in someone’s brain results in a different perception of the world around them, creating anxiety, fear and other emotions which then lead to different behaviours. Understanding that someone with dementia is experiencing a change in perception which causes behaviour should fundamentally alter how we interact with those who have dementia.
Dr. Sherry Dupuis, former director of MAREP (the Murray Alzheimer Research Education Project), feels that we need to reframe our view of these behaviours. Instead of merely seeing the ‘challenge’ or ‘difficulty’ that these behaviours cause for us, or assuming that all behaviour is attributed to disease, we need to reframe these behaviours as a form of communication. Dr. Dupuis views behaviours as a form of personal expression, a unique way of communicating needs. We should then seek to understand the meaning behind the personal expression.
We must remember that people who have dementia were all unique individuals prior to the onset of their illness. They continue to be unique individuals with different personalities, communication styles, interests, life histories, etc. Dr. Dupuis charges us to never lose sight of the fact that a person with dementia is first and foremost a person who requires love, care, and understanding, not just a disease or a ‘case’ that needs to be managed.
One of the greatest gifts that we can offer to someone with dementia is the gift of truly relating to that person—validating their personal experiences and feelings. Someone with dementia is experiencing the world around them differently than they previously experienced the world, and differently than you might be experiencing the world around you.
This experience may be frightening, overwhelming, or worrisome, and the feelings that are generated and their emotional response is fully valid. We cannot be dismissive of someone’s feelings or emotional responses just because we do not deem a situation to be frightening to ourselves. The kindest thing we can do is try to understand the emotional response and validate the feelings that someone else is experiencing. Only then can we attempt to change someone’s experience into something more positive.
If someone is distressed or having a negative experience, distraction can be helpful, but it is not the first step in the process. Stap emphasizes that you cannot jump immediately to distraction, otherwise you risk being dismissive of someone’s feelings. Stap proposes a four-step process where distraction is the final step, not the first option.
The Four Steps:
1. Show you care
2. Show you want to help
For example, Agnes has dementia, and she is upset and focused on wanting to return home. The first step is to acknowledge how Agnes is feeling. You might say: “You need to get home, Agnes? I can understand why you’re so upset.” Attempting to inform Agnes that she is already at home—known as reality orientation—is not helpful and only causes more distress; Dupuis and Stap agree that there is rarely, if ever, a good time for reality orientation.
After acknowledging and validating Agnes’ feelings, you want to show that you want to help. You might suggest: “let’s go see if we can find someone who can help us, Agnes”. While on the hunt for someone who can help, you have the opportunity to redirect, the third step. You could say, “I’m tired. Before we look for someone else who can help, do you mind if we rest here by the piano?”. After this, you have the opportunity for distraction, the fourth step. You could then say: “You play the piano, don’t you, Agnes? Would you play me a tune?”
If you had jumped immediately to distraction via the piano when Agnes first approached you, she likely would have felt even more frustrated that her needs were not being addressed. Acknowledging Agnes’ feelings and needs, then assisting her to focus on something that is more comforting, allows for a positive experience overall.
Interpreting all behaviour as a form of personal expression shifts the focus off of the disease of dementia, and refocuses attention on the individual person. Suddenly, behaviours are imbued with meaning and purpose, a form of communication. It is then our responsibility to enable the best possible form of communication and understanding, setting people up for success, regardless of dementia or other illnesses.