Despite growing awareness about dementia, a lack of understanding in recognizing or perhaps a“mis-understanding” dementia-related behaviours continues to persist among family and/or frontline caregivers. This can lead to unnecessary frustration, anger, resentment, fear and even caregiving practices that may cause more harm to the situation.
Equally concerning is that this lack of understanding can also lead to unnecessary caregiver burnout and compassion fatigue. This can all be avoided and is certainly preventable given the right education on understanding and managing dementia-related behaviours, also sometimes referred to as “responsive behaviours.”
An Important Thing to Remember When Caring for Someone with Dementia
Remind yourself that there is always a reason behind the behaviour. The caregiving experience would be less of a struggle by simply reminding yourself that there is meaning behind the behaviour.
When supporting someone with dementia exhibiting a change in their behaviour, it’s important to step back and reflect on what may be causing this change; and, developing the habit of asking “why?”
Why is Mom saying such inappropriate things to her caregivers?
Why doesn’t Dad want to play golf anymore?
Why does my wife seem afraid to take baths now?
Why is Mom hiding money all over the house?
Remember too that things are not being done on purpose and that “the person with dementia is not giving you a hard time. They are having a hard time.” (Author Unknown)
Finding Empathy, or “Common Grounds” with Someone Who has Dementia
Have you ever given your partner the “silent treatment” or lashed out at them or said something out of anger or frustration that you regretted afterwards?
Was there a reason for YOUR [responsive] behaviour or a reason why you reacted the way you did?
Was it because you felt like your partner was not listening?
Was it because you felt misunderstood?
Was it easy to communicate to someone what you wanted or needed?
How would you feel if being misunderstood or not being heard becomes a regular occurrence?
How do you think this impacts your physical, emotional, psychological and social well-being as well as your relationship with your partner?
Even for those with optimum cognitive abilities, communicating wants and needs can be challenging (sender to receiver). At the same time, even with fully functional cognitive capabilities, it is not always easy to accurately understand what someone is trying to communicate to us (receiver to sender). Communication is not perfect. It’s flawed. Hence, the reason why miscommunication and conflicts is a very common human experience.
Imagine what it might be like for someone with a cognitive impairment that continues to decline slowly like in the case of Alzheimer’s disease?
For most of us, especially those living with symptoms of dementia, the most common reason for us exhibiting “responsive behaviours” is unmet needs.
Behaviour as a Form of Communication
“When communication becomes difficult, the person will start using behaviours to communicate their needs to those around them. For example, the person may be pacing back-and-forth as a way of communicating that they need to use the toilet.” (“Conversations about Dementia and Responsive Behaviours,” Alzheimer Society of Canada).
Whether the behaviour comes in the form of aggression, agitation, making loud noises, repetitive behaviours, wandering, hiding, hoarding, or withdrawing socially from peers, for example, the person with dementia is trying to tell you something. With their diminished cognitive abilities, they are trying to communicate to you, their caregiver.
When responsive or reactive behaviours appear, the most common causes could be: physical discomfort, pain, a concern/worry, a trigger of some kind, something bothering them from their environment or even loneliness or boredom.
Sometimes, lacking the right words, we can communicate through our behaviour. By failing to recognize these behaviors as forms of communication, we inadvertently disregard the individual’s attempts to express themselves.
Let’s make a habit of asking “why?” Afterall, isn’t that, at a minimum, what we all want and expect from those who know and love us to ask when we are not feeling at our best?
Karen Tyrell CPCA, CDCP is a Dementia Consultant, Educator, Author & Advocate, and Founder of Personalized Dementia Solutions Inc. (www.DementiaSolutions.ca). Karen offers her expertise on dementia care through speaking engagements; workshops; support groups (both online and in-person) and by working one-on-one with families/caregivers to provide emotional support and practical solutions. She was also on the design team for The Village Langley (Verve Senior Living) and provides ongoing education to the Village team, families and the community. If you would like to learn more, please feel free to reach out.
The contents of this blog are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional.